The Wilson Heart

Daylia's 6th Birthday - Jan 4 2012

2012-01-26T12:26:00.000-04:00

Dear Crossbridge

2012-01-24T12:13:00.003-04:00

Dear Melissa Altman and our Crossbridge Family,

Today marks the two year anniversary of our son Josiah's passing from this earth and on into eternity. The difference that Crossbridge made in our families life during the 8 months of our son's hospitalization in Charleston is unmeasurable. My husband and I have been clinging to a verse for the past two years out of Lamentations that says, "Because of the LORD's great love we are not consumed, for his compassions are never fail. They are new every morning; great is your faithfulness. " Lamentations 3:22-23

I know that what Crossbridge does is a physical outpouring of God's Love and so I feel like I could say and not be wrong for changing some words in scripture, "Because of Crossbridge's great love we are not consumed." That is what Crossbridge offered us in the 8 months we were cared for by them. Melissa Altman and Crossbridge was a physical representation of God's great love for us and therefor we were able to live through the struggles of that time without being consumed.

I remember before Josiah was born trying to plan for our "trip/stay" in Charleston at MUSC. At that time we thought it would be for a couple of weeks maybe a month at the most. Early on I felt convinced that we should not worry about the cost of housing in Charleston, that our needs would be met. But as time drew near and we hadn't found a place to stay we began making arrangements to rent a home 45 mins from the hospital for $1,500 a month. I should have never doubted God and what he could do. Just a week before Josiah was scheduled to arrive our rental fell through. That very day I received a phone call from a member of our church saying, "I was at family reunion in Kentucky (i think) and I met this woman (i wish I could remember the exact details, I should have written it down back then). I don't remember if it was Melissa Altman or a friend of Melissa's but basically via a family reunion hundreds of miles away she put me in contact with a brand new ministry in Charleston, SC called Crossbridge, that was seeking to meet the needs of families while their loved ones were hospitalized. Within a couple of days Melissa had found us a place to stay for free for two weeks! We were thrilled! We would just wait and see what God would do after that. I don't think any of us could have imagined how great our God would have been to us and how he would use Crossbridge to bless our family. What was initially two weeks of housing turned into 8 months of accommodations, that turned into a home and a life for our family.

Crossbrige provided us a way more than a physical place to live, meals to eat, and financial resources. They provided us a home where we could bring our other two children and we could continue to be a family while our son was at MUSC. We celebrated 5 birthday's, Father's day, the 4th of July, a first day of pre-school, Halloween, Thanksgiving and Christmas as a family that year because of Crossbridge.

I worried a lot in those days how our two pre-school age daughters would handle all this change. How they would handle mommy and daddy being at the hospital so much with their brother. How they would handle daddy traveling 4 hours back home each week to work for a couple of days. I truly believe that the negative impact that could have happened during these 8 months was greatly reduced because of Crossbridges love for our family. Because of their help we were able to maintain the greatest sense of normalcy available for our kids. We were able to still have family dinners together, around a table. We were able to tuck our precious girls into bed most every night. We were able to take them to the beach, the park, have picnics, teach them to ride a bike, teach them to swim. These things and those moments are priceless. Those are the things for which we cannot begin to express our deepest gratitude to Crossbridge and it's founder Melissa Altman.

On this day as we look back at and celebrate our son's life and cry tears over the fact that he is no longer with us physically we wanted to take a moment to say thank you Crossbridge, for being the physical out pouring of God's great love in our lives. The Wilson family loves you Melissa and our Crossbridge family.

My Name is Milo, and I Don't Know How to Grieve

2012-01-24T11:32:00.013-04:00

Today is January 24th. Two years ago, January 24th 2010 was on a Sunday. I led worship at Ridgeview Church, and Erin and my girls were all with me for only the 3rd time in almost a year. You see, my son Josiah was on a hospital bed in the Pediatric Cardiology ICU in Charleston, SC which was 220 miles away. That morning, while I was leading a worship song by David Crowder entitled "You Make Everything Glorious," our medical family of professionals performed CPR on our son for nearly an hour before finally conceding that Jesus had taken him home.

Erin and I received the news via telephone minutes after the church service at Ridgeview concluded. After collapsing on the ground together in a tidal wave of emotions, we began the 200 mile drive, most of which we spent in silence. I found myself quiet and emotionless inside. Now what were we supposed to do?

Two years have passed, and I'm still not sure what I'm supposed to do. There are times I am brought to tears, but I still feel a strong emotional tug far less than I would prefer. Grief is a very strange emotion. It takes on forms of anger, depression, intense sorrow, and at times intense joy. I remember feeling a similar way when my grandfather passed away. However, I experienced my father to have a new soft part on his heart. Tears flowed often. First about grandpa, then about graduation ceremonies monumental childhood achievements, and now tears fly at the drop of a hat. This has not been my experience however. I still feel at a loss for what to do. Erin and I experience grief totally differently. How could we manage this together? In the first few months after Josiah's passing, Erin and I committed to each other to read the entire Bible through in 90 days. We felt that if nothing else, this should be a place to start looking for answers to all the questions spinning around us. She and I loved that season of life. Pouring over such large amount of scriptures gave us a new big picture prospective on God's Word.

The months that followed were very sweet for us. God had unmistakeably directed us to move back to our home region of Buffalo, NY after almost 10 years in SC. He made it so very obvious that we have to have been blind and deaf spiritually to miss all the cues He was giving us. Through this process we became part of the core team and pastoral staff of www.theWELLbuffalo.com which has been a ride of a lifetime, experiencing a Creator God, and how he interacts with his human creation.

Yet, while all of this continues to happen, and joyful experiences surround us on every side, grief continues. And I don't know how to grieve. I've learned that Erin and I don't grieve in the same manner, and that she and I grieve very differently from other people who have experienced loss in this way. Fact is, nobody knows what to do. People don't know what questions to ask. I don't know how to express myself. New friends don't know what we've been through. I can't decide whether to tell them every detail, or just the "highlights."

Part of what we have been experiencing at theWELL has been wrapped up in a massive commitment by our church and our staff to be intentional about building relationships, and sharing our building space with people in recovery. Alcoholics, Drug Addicts, Over-eaters, and so on recovering from their addictions and the damage it has done to their lives. We have learned that this community has a far better understanding of what it means to be real, genuine, and honest about who they are then our typical American churches have been. They know what rock bottom looks like, and know they need help. Through the process of understanding this, we have also come to grips with the fact that every human has hurts, habits, and hangups that are at the end of the day: unmanageable. For some it is alcohol, others adultery, and others pornography. But to some its anger, bitterness, or complacency.

My name is Milo, and I don't know how to grieve. I know at the end of the day, this is a hangup that is not in my own power to remedy. I believe wholeheartedly that Jesus has the power to heal our wounds, and that he is doing so a little each day.

Lamentations 3
22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.

Daylia's First Day Of School

2012-01-19T12:22:00.000-04:00

original video source

Daylia and Hazyl Go Deer Hunting

2012-01-18T12:19:00.000-04:00

original video source

Daylia Talks About Her "America Dress"

2012-01-14T15:43:00.000-04:00

We stumbled on some older video footage from a couple years back. Its crazy how old you feel like your kids were at the time. Now she looks incredible small and cute! How time flies!

original video source

Christmas 2012 in Elizabeth City

2012-01-05T11:53:00.000-04:00

We had an absolutely fantastic week with the Wilson family in North Carolina. Here are a few pictures to document the week. Enjoy!

Christmas vacation 2011

2011-12-29T16:30:00.000-04:00

The girls got the opportunity to see a little piece of Uncle John Marks job in the coast guard. Aren't these the two cutest little Coasties you have ever seen?

Hello World!

2011-09-25T21:44:00.002-03:00

It's time to the world or at least the 56 followers of theWilsonHeart that we will be welcoming our 4 child to the world around March 15th!!!!!!

Today I am exactly 16 weeks pregnant! We are thrilled that God has blessed us with another quick conception and a safe and healthy first trimester. Our excitement for this baby's arrival grows each day as it becomes more and more real. I've experienced some minor morning sickness, haven't really gained any weight (mainly due to a battle with dysentery after my trip to Haiti) but do have a cute little baby bump that people are beginning to notice.

I have been feeling much better emotionally than I expected. Before getting pregnant I was really fearful of how I would emotionally feel this time around, but God has given me peace. This may sound weird, but not necessarily peace that everything will be fine but peace that we are exactly in His will and in His perfect plan. I wouldn't want to be anywhere else. That is not to say that I think something will be wrong with this baby or pregnancy either. It's just to say that I am at peace knowing we are in God's will and that He is the author of our Story and our children's story.

Psalm 139:13-16

¹³ For you created my inmost being;
you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
¹⁵ My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

We are thrilled that so many people love and pray for our family regularly and are so excited to be able to share our wonderful news and the progress of our latest journey!

Sending my first to Kindergarten

2011-09-05T22:19:00.003-03:00

Look what Daylia can do. Kindergarten starts tomorrow!

Tomorrow is the first day of school for Daylia. I can't believe my beautiful baby girl is going to start school. I've been feeling a lot of emotions over this as I'm sure every mommy does. But I got thrown for a loop today when I found out that in fact, the first day of school is tomorrow September 6th, not Wednesday, September 7th. I don't know how I missed that, but let me tell you I was shocked today when I learned this bit of information. I guess I had been looking at the school calendar and September 6th was colored in grey and all of the rest of the regular school days were white. So I assumed that the grey meant teacher work day or last day of summer vacation, but as I looked closer today, at the key, the grey day does in fact indicate FIRST DAY OF SCHOOL. I'm very thankful I found out this afternoon and not at 7:45am when I saw the school bus stop out in front of our house! But I was really counting on tomorrow to really prepare, mostly emotionally. It's now 9:30pm, the girls have been in bed for almost an hour and a half, Daylia's bag is packed, I've got her lunch and snack ready, she's got her clothes sitting on the stairs. We are physically ready!

Emotionally on the other hand, I'm not so sure. Daylia has been nothing but excited about school, she's beyond ready, but as I put her into bed tonight she hugged me and said, "I'm not sure I'm ready for school tomorrow (mind you she too "knew" school was starting Wednesday, so I kind of threw her off too!)" I asked why not and she replied, "I thought tomorrow was going to be my last day to snuggle with you in the morning, now today was the last day." Oh my did I have to choke the tears back. This coming from my not so snuggly child. I held it together enough to tell her that's what Saturdays and Sundays are for! She seemed to be okay with that answer as she was now more interested in looking at her book. So I kissed her goodnight and left it at that.

I think I've finally decided how Daylia is getting to school tomorrow. It's been a tough decision that I've gone back and forth on. Now, for my southern friends, I can hear you saying, "why is there any question how Daylia would get to school, of course you would drive her." To you I say, "It's not that easy." See here in the North we do things a little different. There is no such thing as a car rider line. There is no such thing as a rear view mirror tag with your child's car rider number. The vast majority of kids ride the school bus! Shocking, I know! But it's the way I grew up and while I got very used to the car rider idea in my 9 years in the south, I remember my first year teaching in Bluffton, SC, how shocked I was at having to do car rider duty! I didn't even understand the concept. The car rider thing wore off on me like many other fine southern cultural differences and so thinking this summer about putting my 5year old on the school bus has been difficult. We have decided, however, that Daylia will ride the bus. It just makes sense. We are a one car family and Hazyl doesn't get up that early in the morning and it's nap time during dissmal. So unless Daylia wants to ride in the bike trailer and catch a ride with her Daddy on his way to work (which I'm sure we will do plenty of times before the snow comes) she's going to ride the bus. But what about the first day of school? Three days ago, I was taking her, yesterday she was riding the bus, tonight I'm taking her! We'll see what the morning brings. I think I've convinced Milo to let me take her on the first day for memories sake. Pretty sure I could regret not taking her, but it's doubtful I'll regret taking her. However, she will take the bus home and Hazyl and I will be at the bus stop with huge hugs ready to greet her.

I'm excited for my sweet Daylia to start this new adventure in her life. She will grow and excel in so many ways. She is so ready for this, just not so sure I am!

Feelings of Fear

2011-07-08T09:52:00.002-03:00

On of the things that has changed about my personality since Josiah died is that fear creeps into my life way more than it ever used to. I don't like it because it isn't part of who I was before. It is something that I fight against and am so grateful for my firm foundation and trust in God because that allows me not to be overtaken. It's weird too, because I don't find myself being fearful of events or the potential of bad things happening, I actually fear my emotions.

Here's a big, to be honest with you… Milo and I recently started to try and get pregnant. We started to try over 8 months ago but that only lasted 2 weeks (if that) when I realized I was avoiding Milo and discovered I was really not ready. It was fear that kept me from being ready. So we stopped trying. In the last 8 months I have worked through some things and now feel like I am ready to start trying again. But there is still some fear. Like I said, I'm not really fearful of bad things happening. I am more fearful of my feelings.

The past couple of days I have felt fearful of the emotions that would come with not getting pregnant. I am fearful of not being excited if I do get pregnant. I am fearful of how I may or may not feel about a new baby. I'm fearful of all the emotions that go along with pregnancy.

Fear does not control my life. I am choosing to face it and keep living the life God would have for me. We believe God has given us the green light to go ahead and try to get pregnant again and we are really excited about that. However, that decision doesn't come without fear.

New Look to TheWilsonHeart!

2011-07-06T01:32:00.007-03:00

Milo and I have been working on this for a couple of weeks (I'm slow, not Milo!), so tonight I present the new look of theWilsonHeart! I needed a newer, fresher, lighter look and I am really happy with this! The banner is my favorite part and obviously what we designed the rest of the blog around. The image holds a lot of meaning to me and that's what I really wanted. It's a photograph that my Mom and Dad found for me an art festival called Artisphere, in Greenville, SC. They gave it to me for Josiah's second birthday. I sent the image to my sister-in-law Rahel and asked her to work her magic. She added some great effects and added the title of our blog. The fonts are awesome but even better are their names. "TheWilsonHeart" is in the font "birth of a hero" and "a heart that holds on" is in the font "go." I was so excited when she sent me back her finished product, it's pretty awesome, don't you think?

The new layout is still a work in progress. There are some things under the drop down menus at the top that I need to edit, tweak, and update, but it sort of goes with something I believe deeply… your story doesn't need to be perfect or complete to be shared. I'm really excited about the new look of TheWilsonHeart and I am also excited to be writing more again. I really hope to keep it up and I'm hoping this new look spurs me on! Thanks for sharing in our journey with us.

Old Wilson Family Home Videos Part 6

2011-06-25T17:42:00.001-03:00

Sometimes you go back through old pictures on your computer or camera and realize that you never shared them with your friends. I found some extra fun material about our daughters over the last few months that I hope you enjoy! We are enjoying these two sweethearts more and more every day.

The Wilson Girls Learn How To Rockwall Climb at Circle C 2011

watch on youtube

Old Wilson Family Home Videos Part 5

2011-06-24T17:18:00.001-03:00

Old Wilson Family Home Videos Part 4

2011-06-23T16:48:00.001-03:00

Old Wilson Family Home Videos Part 3

2011-06-22T16:36:00.005-03:00

Old Wilson Family Home Videos Part 2

2011-06-21T16:10:00.002-03:00

Sometimes you go back through old pictures on your computer or camera and realize that you never shared them with your friends. I found some extra fun material about our daughters over the last few months that I hope you enjoy! We are enjoying these two sweethearts more and more every day.

Lord of Heaven - another original song by Daylia Wilson (on the Road to Split Croatia)

watch on youtube

Father's Day Surprise

2011-06-20T17:54:00.003-03:00

For those who have been "dying to know" here's what I did for Milo for his father's day gift. I put some things together to decorate his office. I broke into his office on Friday night and hung these things on his wall. The best part of this was that he read my previous post and so he never even questioned where I was going or what I was doing friday night. I just told him I needed to go out for a little bit and he just simply said, "ok!" I was so glad I didn't have to come up with a lie ( I'm so bad at that!).

I put together a couple of things. The first is obviously pictures of the girls and the family, then their handprints. That one turned out cute. I have some really great pics of the girls without being a professional photographer! The other is Josiah's t-shirt that one of our nurses at the hospital made for Josiah and had him "wear" on father's day 2 years ago. I put some pictures of Milo and Josiah in there and then matted the frame with one of Josiah's blankets. Boy was it good to open and dig through the bins of Josiah's things for this project. It's the first time I've opened them since we have moved here. I just kept taking in deep breaths of his blankets. The last frame is a picture of a magazine we received in the mail the day we made the announcement at Ridgeview that we would be leaving to move to Buffalo. I think I'll share the significance of that magazine in another post.

On the wall opposite Milo's desk I put this scripture (so he has to look at it all day!) as a subtle reminder from his wife to slow down and make sure his focus is right. God is doing some great things at theWELL and Milo and I are so humbled to be a part of what God is doing. As one of the pastors of theWELL we feel such a responsibility for our family to stay connected to the "Source." Serving at theWELL is an awesome privilege.

-A heart that holds on

Old Wilson Family Home Movies Part 1

2011-06-20T16:09:00.002-03:00

Marriage

2011-06-16T09:55:00.004-03:00

I've been working on a little father's day present for Milo this week and I have been reminded of something I used to feel a lot when we first got married. I guess the busyness of life and kids have gotten in the way in recent years. I was reminded yesterday how serving your husband and doing something special for him evokes and stirs up feelings of love. It caught me off guard yesterday as the girls and I were working on his gift to notice the giddy butterflies I was feeling in my stomach. I don't know how to describe it but I think you know that excited "lovey" feeling you felt when you were young and there was a boy you liked! The way I used to feel all the time when Milo and I first met!

Milo and I have been married for 9.5 years this month and I'm so glad I still get those feelings for him. I've learned something really important this year though about those feelings. It's not always his responsibility to evoke those feelings in me. Many times it's up to me to allow myself to feel and see how much I love my husband. Let me explain a little.

This past year and a half as we have been grieving the loss of our son has been difficult on our marriage. Thankfully because of our solid foundation it has not been as difficult as it could have been, but it's still been hard at times. There have not been excessive arguments or disagreements. It happened in the silence. It was in the distance I let happen. Milo and I have always been very close, best friends, we do everything together. I've never been a huge fan of girls night out because I love being with Milo. We enjoy doing many of the same things, with the exception of tweeting!

So for the first time in our married life when Josiah was alive we HAD to do things separately. Milo had to continue his job and live part time in Greenville while I was living in Charleston. Three to four days a week we were apart and we began to have separate lives. He had his work and friends back in Greenville and I had this new group of friends and my "work" at the hospital in Charleston. What snuck up on me (and didn't realize for months after Josiah passed) was how much I let myself become disinterested in his world. I quit asking him about work and the church, about what he did while he was apart from us.

After Josiah died we began on a new journey that we did separately, grief. Grief is so personal and no two persons, no matter how close they are, grieve alike. So what again snuck up on me was how I allowed the distance to grow between us. I will say that Milo tried very hard to stay close to me and it was me that created the distance. I had found an independence in Charleston that I liked (to some extent) and so when our lives got physically put back together in Greenville, after Josiah's death, I kept my emotional independence. The toll that took on our marriage was hard. I quit caring about the things Milo was interested in, which led to me finding the things he talked about annoying, which led to me just seeing the negative in my husband and not enjoying him. When people complimented him I would think in my head, "yeah, but…" It took me more than 6 months to realize what I was doing and that it was my fault that our relationship felt so strained. I realized that while I would always love Milo at that point I was not feeling "in love" with him. And I could see I had two options. Let things keep going the way they were going and let the distance continue thinking it was up to him to make me feel in love with him or turn myself around and walk back towards him. It took me several weeks to process that in my head and make a decision. Finally, I approached Milo with all of this. I hurt him, as he had no idea I was feeling this way, but I kept reassuring him that me having this conversation with him was me deciding to walk back towards him. It was a difficult conversation. But from that day on things began to change. My first step was to quit looking at the negatives and search for the positives. It was a choice and it was work, not because my husband has a lot of negatives (he is a wonderful husband) but because I had closed my eyes to all the positives for so long. The awesome thing is that while in the beginning it was hard, very soon it became easy and natural. The second thing was to become re-interested in the things he was interested in. I needed to ask him about work and LISTEN to his answer. I needed to go for a bike ride with him, even if he took me up the biggest, steepest mountain in all of Greenville county. And the third was to go out of my way to serve him or to do nice things for him. That goes back to where this whole post started from (WOW, I was not intending on sharing all this!). It felt so good to do something special for Milo this week and it reminded me of where we were a few months ago. I'm so glad not to be there anymore. But I was reminded again that a marriage requires intentional work and at times it requires more intentionality than others. I love my husband and I am so "in love" with him! He is an absolutely wonderful man, husband, and father. I thank God for putting the two of us together.

A Great Family Weekend

2011-06-13T09:30:00.006-03:00

The weather here in Buffalo has been amazing for the last 3 weeks or so. Warm sunny, summer days and cool evenings to enjoy a bonfire. We have been making the most of weather as of late. In just the last 2 weeks alone we have been to the

Buffalo Zoo

Marineland (Canada)

and Camping at Stony Brook State Park

We had such an amazing time as a family camping. It was so nice to get away, relax and enjoy God's creation. Stony Brook is a beautiful place that I grew up enjoying with my parents and brothers. It was a treat to take my girls there. We left on Thursday after Milo got home from work. By the time we set up our tent and I got around to making dinner it was after 9pm! So we ate at the picnic table enjoying chicken fajitas by lantern light (thanks to my uncle Mike who dropped by our house earlier in the day with a lantern for us!). It was great! The girls stayed up for a campfire and then fell asleep in the tent. Milo and I stayed around the fire for awhile enjoying each others company and good conversation. I love my husband so much!

The next morning was filled with cooking breakfast on the camp stove and a big hike in the gorge. We took our time to throw rocks in the creek, splash in the water and head a little off the trail at times.

The hike certainly wore the girls out and they both crashed in the tent for an late afternoon nap! Milo even fell asleep in the hammock. Doesn't get much better than that!

Spent the evening cooking dinner over the campfire and making s'mores!

We packed up saturday morning, played in the creek some more and then headed home. It was a perfect weekend with our little family. And as always God continues to remind us of how much He loves us and how we take Josiah with us wherever we go. Check out the picture of the rock Daylia picked out of the river and said, "look mom, it's a heart to remind us of Josiah."

Happy 2nd Birthday Josiah

2011-05-20T09:43:00.002-03:00

It's always been a birthday tradition in my family to tell your birth story on the eve of your birthday, my mom still tells me my birth story every year and I've been telling my girls theirs. So I figured I would repost Josiah's birth story that I wrote last year on his birthday.

Dear Josiah,

Two years ago today your mommy and daddy were preparing for the biggest day of our life. We had known for about 4 months that you were going to be very sick when you were born and we knew you were going to need immediate medical attention. So there was a very specific plan put in place for your birth. We were to arrive at the hospital at 5am and so we tried to go to sleep early. Mommy packed a bag of clothes for her and daddy and some things that I hoped you could use like blankets and a hat. We got up at 4am, got ourselves ready, kissed your big sisters good-bye and headed to the hospital. It was very quiet and lonely in the car and on the road. Both your mommy and daddy were very nervous. We got to the hospital, parked in the best parking spot ever (because there was no one else there), you know your daddy was proud of that! We walked into the hospital, which seemed so foreign and had to ask for directions. Little did we know that one day we would know that place better than our hometown. We headed up to the 4th floor, to the main OR waiting room and waited. People thought we were in the wrong place and I had to keep telling them that yes, I was delivering you in the main OR. You see a normal c-section would have taken place on the labor and delivery floor but you were not going to be a normal c-section. They finally called your mommy's name and took us back to the pre-op area. We were put in the tiniest pre-op room there was, which was a big mistake, because I swear the entire hospital stopped in to see us and introduce themselves. The hardest part about that time in pre-op was my begging the doctors to allow your daddy to be in the OR with us. They had said no and then they said yes and took your daddy to another area to get him dressed properly to be in the OR. I was so happy they had changed their minds. About 15 minutes later your daddy came back dressed the same way he was when he left me and had to tell me that the doctors had yet again changed their minds and said no. I was devastated and that's when I lost control of my emotions. I was so scared, I was scared of surgery, I was scared for your safety and I just wanted your daddy with me. They finally wheeled me back to the OR around 7am and things really began to move fast. They wheeled me into this operating room full of people, probably 25-30 people, and everyone was trying to introduce themselves to me. Anesthesia sat me up and told me to be still while they gave me a spinal, all they while people were still introducing themselves to me. I was trying so hard not to cry but that's all I could do. I was so scared. It was loud and chaotic in the OR when someone finally stood up and told everyone to quit talking. She told the people in the room if they were a student or a resident they had to leave there were just too many people.

At that point things began to calm down. It was quieter. I was laying on the table with anesthesia by my head. I remember the anesthesiologist touching something to my face and asking me if it felt cold. I really didn't know how to answer her. I didn't know what the right answer was and I was afraid if I gave the wrong answer they were going to start the c-section and I was going to feel it. She kept touching me different places with this thing and asking me if it felt cold. I felt like I was at the eye doctor when they ask you which one is better 1 or 2. I didn't know if I felt cold or not I didn't know how to answer. I guess I answered right because the next thing I knew she told me they had made the incision in my belly. I didn't feel it! I was able to finally relax a little. There was this amazing nurse anesthetist sitting at my head telling me everything that was going on. She was a gift from God. She was so calming. She even found an eyelash on my cheek, took it off and told me to make a wish and blow on it. She then taped the eyelash to my arm for good luck. I still have that eyelash. I was praying at that point and I told her that what I had wished for was to hear you cry. If you cried that was going to be a good sign. The doctors told me not to expect you to come out crying. In moments there you were, crying. At 7:55 am, May 20th, 2009, I heard you cry. They showed you too me for a tenth of a second. I can't even remember what you looked like then, but I heard you cry and I smiled. I was so thankful for that cry and I relaxed some.

The doctors were working on you on the other side of the room. I couldn't see you but I could see and hear the doctors taking care of you. I realized then that you weren't crying anymore and got very scared again. I asked a nurse or a doctor (I don't really know) if she could go check on you and let me know. She did and she reassured me that you were stable. She also did something that I will cherish for the rest of my life. She took a picture of you on her cell phone and brought it to me. It was the first time I saw you. She also ran out into the hall where your daddy had been sitting just outside the OR and showed him the picture.

They let your daddy sit in the hall where he could see through a tiny window into the OR we were in. Daddy tells me that Dr. Atz kept coming and giving him updates. I know he felt awkward sitting there with everyone staring at him, people don't just sit in the operating suite, in shorts and flip flops, but it was better than having to sit way out in the waiting room. Dr. Atz had told your daddy, "when they bring Josiah out if they go this direction that's a good sign they are headed to the PCICU, if they go that direction that's not as good, as they will be headed right to the cath lab.

In the OR the doctors were now putting IV lines in your belly button and intubating you because you weren't able to keep breathing on your own. Probably 20 minutes after you were born the doctors had stabilized you enough to move you. You came out of the OR a few moments later and daddy got to see you for the first time. He was even able to kiss you. The doctors took you this way, the way to the PCICU, so that was a good sign. What we didn't realize until at least an hour later was that you were only in the PCICU for about 3 minutes and then they had to rush you to the cath lab.

They finished sewing me back up and then brought me out of the OR where your daddy got to hold my hand. He told me that he got to see and kiss you. I was so grateful for that and then I don't really remember much after that for a couple of hours. The timeline of events is pretty foggy. I know that eventually I got settled into my own room. I remember the nurses arguing about where to put me. Apparently, they have wings of the labor and delivery floor with rooms for moms that have had their babies, rooms for moms that are on bed rest or having labor stopped, and rooms for moms whose babies have died or had miscarriages. I honestly don't know where they ended up putting me. But I got settled into my room and we began receiving hourly phone calls getting updates on how you were doing. Your Grandpa and Grandma and Nana and Papa were all at the hospital with us. Anxious to see their beautiful grandson and just praying that you would be okay. We got one phone call to tell us that they had tried one way to get through your atrial septal wall and failed. Dr. Baker was going to try another way. About an hour later we got another call and found out that attempt failed too. We were told at that point that they were going to try one more thing but if that didn't work there wasn't going to be anything else they could do for you. That was not news we were expecting. I never expected to hear those words, not on the day you were born. Your daddy and I mainly sat in silence. There were no words to say. I know we were both begging God for a chance to see you alive. The phone rang about 20 minutes later (thank God we didn't have to wait longer than that) and the news was wonderful. This time Dr. Baker was successful. You were going to make it through that surgery and we would get to see you alive. Praise God. Your daddy and I worshiped God in that moment like we had never before. We just felt God's presence so strongly as we gazed at the cell phone picture the nurse had given us.

It was still another hour or so before Dr. Baker came into our room to speak with us. When he walked into our room he had the biggest smile on his face as he told us that you were in the PCICU and stable. His smile struck me in such a way that my unfiltered mouth blurted out, "you did a good job today and you are pretty proud of yourself aren't you?" I have know idea what he said in response, I just know I made him feel awkward. But I was proud of him. What Dr. Baker did that day was save your life and grant us 8 months to get to know you, love you, hold you, smell you, read to you, sing to you, love you.

We were finally able to go see you for the first time at about 6pm. Daddy wheeled me to the PCICU and I got to see you for the first time for real, I got to touch your hand and your toes. I think I was too scared to touch much else. I was so overwhelmed and exhausted from surgery that I couldn't stay very long. Your daddy spent the night by your side and began to learn all there was to learn about you. We learned then, but I don't think realized for quite some time, how sick you were at that point. You were very sick and barely hanging on. It took two nurses to stay by your side constantly to take care of you. But you kept hanging on. We learned later that you probably suffered two strokes while in the cath lab, you lost function of one of your kidneys, and for a couple of weeks you had very limited blood flow to one of your legs. But you kept hanging on. Thank you so much for hanging on as long as you did.

Your birthday was a very scary day, one of the toughest your daddy and I will probably ever face, but May 20th gave us you and you are amazing! We love you and miss you so much Josiah. We love you all the way to heaven and back. Happy Birthday sweet boy.

-A heart that holds on

Hazyl Grace goes to the ER (again)

2011-02-12T19:33:00.000-04:00

watch on youtube

The Wilson Girls Learn To Ice Skate

2011-02-11T13:48:00.000-04:00

watch on youtube

Grief Begins

2011-02-06T01:01:00.001-04:00

more coming soon

The Wilson Girls in the Buffalo Snow

2011-02-04T16:58:00.000-04:00

watch on youtube!

Josiah's Celebration of Life Service

2011-01-29T10:11:00.002-04:00

I promised to write about the way we spent January 24th, the 1yr anniversary of Josiah's passing. It's taken me a little longer than I expected.

We spent the day together just the four of us. We told the girls what day it was and what that meant. Hazyl still refers to it as the day the nurses flew Josiah to heaven in the helicopter. The last time the girls saw Josiah was January 7th when they watched him be loaded into the helicopter and taken back to Charleston from Greenville. So Hazyl's description of how Josiah got to heaven makes sense.

We love to spend time outdoors. I always feel God's presence more out in His creation, hence the reason we went camping on what would have been Josiah's first birthday. So we were hoping to do something outside, like take the girls skiing, but it was a bitter cold day. It was about 4 degrees so that was out of the question. We did manage to go out for a little bit and make snow angles and write Josiah's name in the snow, as I wrote about previously. We took the girls to our favorite restaurant for lunch and then to see "Tangled." We simply had a nice time together cuddling with our girls. We had some friends offer to bring dinner over to us, so we had a very nice dinner with them.

Our big plan for the day was listening to Josiah's memorial service after the girls went to bed. We hadn't done this at all and didn't really remember too much of what was said because that day was such a blur to us. I hadn't listened to his memorial service yet partly because I wasn't ready and partly because I was angry over his service not getting video taped. It was an accident but Josiah's service never got taped and I didn't find that out until 3 months after Josiah had died. I felt like I had so little left of Josiah and couldn't understand why that piece of him had been taken from me too. We do have the audio just no video. Anyway, a year later I have dealt with my anger over this (which was never at any person but over the situation) and was ready to listen to his memorial service. So we invited two couples over to listen to it with us and just share in this sweet but emotional time. The night before I decided it might be awkward for the six of us just to sit and stare at nothing for over an hour. So I thought I would try making a slideshow and put his service as the audio behind the slideshow. I knew this was going to take a lot of pictures so I decided to pretty much put every picture I have of Josiah and our family during those 8 months in the slideshow. I got done moving them all over and it was 924 pictures. So I started doing the math… 924 x lets say 5 sec per pic =4620 secs. 4620 secs divided by 60 sec/min = 77 mins. So I went over to my itunes to see how long Josiah's service was and guess what IT WAS EXACTLY 77 MINS LONG! How perfect is that and my project was done! So Milo and I and our four friends listened and watched a very rough slideshow of our 8 month journey with Josiah. It was an awesome way to remember the life of our son. And we actually made something very good out of what was a huge disappointment. I think it was much more meaningful to watch all the pictures of our family during that time rather than just watching the people who spoke at Josiah's service. God usually does have a better plan, it just might take us a while to realize it!

So we thought we'd share the video with you (not that I expect anyone to listen to it in it's entirety, but maybe a little each day for the next few days or weeks!). We have since, done a little editing to it to make it a little better (so it's not 77 minutes anymore, now it's only 73 minutes).

We also did one last thing for the day that we plan to make a tradition out of. All four of us slept in the same bed together! We never ever do that, but that's what I wanted, to cuddle with my husband and my girls and cherish each moment with them.

A heart that holds on

1yr anniversary

2011-01-25T13:32:00.003-04:00

I hope to write a little more about our day later on this evening, but I wanted to share a couple of pictures of one of the small ways we remember our sweet boy yesterday. It was freezing yesterday, well actually well below freezing, like -1 degrees freezing. But God blessed us with a beautiful sunny day, so we took the girls outside wrote Josiah's name in the snow and made some snow angels! The four of us had a wonderful day just spending time together talking about and remember our beautiful boy and brother. More to come...

-A heart that holds on

Fridays

2011-01-18T16:52:00.002-04:00

I love Friday mornings.

Friday mornings Milo has made it a "tradition" to take the girls out on a date. They usually go out for breakfast (which used to be McDonald's or Burger King, but then Milo watched "SuperSize Me" and gave up eating fast food so now they go to a great local fresh made to order restaurant) then they go on to some great activity like sledding, playing at the park or shopping for Mommy. I love Friday's because my husband gets to spend time alone with his girls and the girls get Daddy's undivided attention which they love.

I also love Fridays because I've started my own routine which usually includes an extra cup of coffee, an extended quiet time with God and reading through my blog, which is in print thanks to some amazing friends. For many months now I have curled up on the couch and read and re-read our days with Josiah. I usually start with what happened with Josiah and our family over the past week and then read forward to the next week. I love this time to reflect and remember. Milo and the girls usually come home to find me stilled curled up on the couch with my blog and tears rolling down my face. It feels good to get that cry out almost every week. I love Friday mornings.

But this past Friday morning hurt and re-opend a wound. I had some other things going on this past Friday morning and I only had a brief moment curled up on the couch with my blog. I quickly turned to the date and realized it was the date of Josiah's finally heart catheterization. I read the post I had written with updates on how the procedure was going and then I read the post detailing the results. That was the day we were told that Josiah was not getting better but that he was getting worse, that his heart and his lung function had decreased, and that he would not be a candidate for his next surgery. This was devastating news to us but we were ever hopeful and optimistic as were the doctors. We were told that while there was not much more they could do for Josiah they felt like we had many more months, if not a year or two with him.

The hard thing about this past Friday though was that after I read that post and reflected on that day I looked forward in my blog to realize there were only 3 more posts about Josiah before the one where we let everyone know that Josiah was in the arms of Jesus. It was only 10 days after I wrote the post about the results of his heart catheterization that Josiah died. It didn't hit me until Sunday night and when it did it hit me hard. I only have one Friday left with Josiah and my memories. The day Josiah died is now only 6 days away. I love thinking back, even on the bad days, and being able to say, "this is what we were doing with Josiah on this day." After January 24th, I have 116 days where I can't say that. May 20th feels so very far away. The days between January 24th and May 20th, the day Josiah was born, seem so empty, there are no memories to celebrate or milestones to remember. Just the 116 days that Josiah was not with us. That has thrown me into a funk this week. The kind of funk where I feel like I'm in a fog and can't make decisions, not even simple ones like what to make for dinner. The kind of funk where when I'm at the store and some sweet lady comes up to me and comments on my beautiful girls I tear up because I want her to know my beautiful son too. The kind of funk where I constantly feel the missing part of me.

The thing is though, I've been here before and I know I'll come out of it. I know that God is near in these moments and his love and beauty will bring me out and usher me through the door of Hope. But for right now I'm okay with being here because the pain allows me to know and feel how deeply I love my son. So in an odd way I "enjoy" the painful days. When the pain is real and tangible the love is also real and tangible.

I also have an amazing husband who has been incredible the past couple of days. It's like he's been here before too! He's been so gentle with me the past couple of mornings when I haven't wanted to get out of bed. He's given me space and time. He's made the girls breakfast and got them playing something to give me some extra time. He's been so understanding when I tell him to go ahead and make plans for us to get out of the house and then change my mind and decide I don't want to go. I thank God for him. I thank God for a husband who understands and doesn't expect my pain to go away because it's been a year. Thank you Milo, you are making this easier.

A heart that holds on

Telling Josiah's Story at theWELL

2010-12-21T11:48:00.006-04:00

11-28-10 Story Part 5: Milo & Erin Wilson from theWELLbuffalo on Vimeo.

Milo and Erin tell their powerful journey through the loss of their son Josiah. Learn what it means to be "A heart that holds on" through even the most difficult times. Listen in as they discuss the pain of great loss, as well as describe what it feels like to be wrapped into the loving arms of a loving God. Learn more about their story at www.thewilsonheart.com

Another Picture Recap of Life in Buff!

2010-11-30T16:41:00.005-04:00

I'm typing this right now looking out the window at the beautiful snow falling outside. It sure does get you in the Christmas spirit. Because I'm such a bad blogger here's a pictorial recap of the past month!

Halloween with Little Bo Peep and Cinderella. Daylia told me she didn't care what shepard she was, she just wanted to be a shepard but a girl shepard for sure!

Uncle Tim (my brother) and Aunt Julie joined us for trick or treating. They had some pretty awesome costumes and made me feel pretty bad for not dressing up.

Nov. 13th We had a surprise 60th birthday party for my Mom. It was a real treat to be home for an event like that for the first time in a long time. My brothers especially did a great job of planning the event. It was wonderful and my mom was really surprised!

Thanksgiving was great! The girls made some wonderful table decorations which included these lovely napkin rings!

19 people all at the same table. My mom was pretty proud to have us all together. That's the first Thanksgiving I'd had with my whole family since our kids were born.

Mom had a special candle in Josiah's place at the table. Thanks Mom.

We miss our little man. It's hard to believe he'd be 18 months old and actually would have been able to eat Thanksgiving dinner.

We spent the day after Thanksgiving out at my parents house in the country and saw our first snowfall of the season! We spent the morning writing letters to Santa then got all dressed up to go out to the mailbox! We weren't quite prepared for it so Hazyl had to wear socks on her hands.

Letters to Santa!

Mailing our letters!

I love this picture!

Sunday afternoon, my Mom took all the grand girls to the theater to see the Nutcracker! I got to give the girls their first Christmas present, their Christmas dresses!

Not sure what I was thinking not putting a coat on them, but they were too cute to cover up!

All of the cousins after the ballet. It was really difficult to get them to stop twirling and dancing after the show.

We are doing well here in Buffalo. There's been lots to enjoy! Thanks for keeping track of us!

Happy Thanksgiving 2010 Old Tom Turkey Song

2010-11-24T17:20:00.001-04:00

watch video on youtube

One year ago

2010-10-31T22:51:00.003-03:00

I meant to write this post yesterday but never got a chance to sit at the computer. So one year ago (yesterday, October 30th) this face literally made my knees buckle. If I had not been holding onto his crib rails or if the room wasn't filled with doctors and nurses I believe I would have fell to my knees that's what I felt like. It was one of the most intense and memorable moments in our sweet babies life. This was the day, at just over 5 months old, Josiah got his trach and his g-tube and so it was the very first time we ever saw his entire face. No tape, no tubes, just his precious face. The feeling I had in that moment was so intense. I am so grateful for that moment. From that day on we were able to hold Josiah whenever we wanted to and it was the day that gave us the hope for being able to bring him home. I will always treasure October 30th and the sight of that beautiful face. I love this boy so much. He is still such a huge part of our daily lives and our family. Today actually, Hazyl's class at church wrote letters asking Pastor Darrick questions they wanted answered. Her question to him was, "Does God take care of babies in Heaven?" When she told me her question she added, "because I want to know if He is taking care of Josiah." What a precious question she has about God. Not a day goes by when our precious son is talked about between the four of us at least. We love him and we love God because of what He is doing in our family through Josiah.

Much needed update!

2010-10-27T09:39:00.001-03:00

So I finally got a moment to sit down and think about my blog. I have so much to tell and share but it seems impossible to go back and share all that's been going on in detail. I also uploaded the pictures that were on my camera today and it amazed me all we've been up to. So I thought that quickest way was to give a pictorial montage of some of the highlights.

Sept. 24-25 We spent a weekend in our favorite place. Charleston, SC. Friday we spent some time downtown playing in the fountains!

Saturday we participated in the Little Hearts Walk and raised money for the American Heart Association. We saw a bunch of our heart friends from families to nurses, doctors, our social worker. It was wonderful to see everyone before we moved. Walking next to Milo in this picture is Dr. Graham the attending on the day Josiah died. It was wonderful to see him and have another opportunity to express our gratitude to him. I have to admit there were more than a few tears shed that day.

Saturday afternoon we spent some time at the beach enjoying the waves. Milo taught the girls how to boogie board. They loved it as you can tell from these pictures!

Early October our good friends hosted a going away party for us. It was a great SC meets NY themed party with lots of good food and great friends!

Unplanned, but Milo and Shannon really were dressed for the party!

The following weekend started our craziest week yet! We traveled to Aiken, Friday and Saturday, to host Milo's sister, Rahel and John Mark's bridal shower at his grandparents home. The girls spent hours flying kites with Papa. What a moment to treasure.

We had a great time with great food thanks to Grandma and Grandpa Swain.

Hazyl so enjoyed playing with her best bud Java!

Sunday, Milo lead worshiped and preached for the last time at Ridgeview. They then had a lunch reception for us. Then we picked up the moving truck and started packing. I wish I had more pictures but was a little overwhelmed with everything going on. We probably had 35 people at the house loading the truck! I literally sat in a corner of our guest bedroom hiding for about 20 minutes trying to hold back tears. Here we are having dinner on the kitchen floor.

The kids loved running around yelling in the empty house.

We had to have an impromptu yard sale at 10pm because not everything fit on the moving truck. So we sold our lawn mower and left behind a couple of pieces of furniture. We were able to leave Monday morning and head for Buffalo. It took us about 16 hours and we arrived at 2:30 am. Tuesday morning we looked at a couple of housing options and by 4pm we were moving into our new home! There was another huge crowd of people from theWELL to help us unload! I wish I had pictures but the camera was packed away!

We spent Wednesday unpacking and then had all my brothers over for dinner and birthday cake to celebrate my 30th birthday!

We've got to get ourselves some Buffalo gear!

Thursday at 4am we headed for the airport and made our way for Tampa to celebrate Colleen and Michael! We had the rehearsal on Thursday evening and also enjoyed some time on the beach and in the sun.

Friday was the wedding. It was such an honor to have Milo perform the ceremony. Colleen was one of Josiah's nurses and it was truly wonderful to be a part of her special day. They had a memorial table in which they honored Josiah. What a touching honor.

Here we are with Mr. and Mrs. Cheveliar! It was a beautiful wedding!

And a beautiful sunset on the beach!

We got back to our hotel at 11:45 pm and then headed for the airport at 3am so that we could get back for a banquet at a local church that is supporting us at theWELL. Sunday, the girls and I went to theWELL and enjoyed a great service, while Milo represented theWELL at another church. Monday, we finally got to some unpacking and today we took some breaths!

The girls and I took a walk to our neighborhood park and enjoyed a beautiful day!

I should have done Daylia's hair! Maybe tomorrow I'll have time to get to that!

-A Heart that Holds On

We couldn't have created this

2010-10-02T22:47:00.003-03:00

I've been wanting to share a post about how all this moving to Buffalo stuff came about but it's hard to know where to begin. I guess I will begin with… This is a God thing. I've told many people lately that we couldn't have created this ourselves. So I'll share some of the things God has given us to know this is not of us. As these things came about through the decision making processes they've served as confirmation. There are a couple of stories I'd like to share but I'm pretty sure I'll only make it through one tonight.

Story #1

The family that we will be serving with in Buffalo are the Castronova's, Darrick, Jodi and their 3 children Sam, Savannah, and Isaac. We didn't know them at all. Milo sent out a couple of e-mails to different people about church planting. Just getting some ideas about what was going on in church planting in various areas around the country. Darrick replied to Milo and they quickly began to build a relationship. After a couple of months Milo finally asked Darrick if he was looking to hire anyone to which Darrick's response was, "No." No for a couple of reasons but mostly because their was no money involved. For some reason that didn't scare us away and they kept talking. Milo and I were very interested in the church they were going to be planting and for some reason just felt like we needed to keep pursuing this. We would find out shortly why.

We knew very little about their family before we met them but we did know that they had adopted their youngest son Isaac from Haiti, which connected with Milo and I. Why you ask. Well I'll have to back this story up… Milo and I have always talked about adoption and the possibility for that in our family. While Josiah was in the hospital we talked about it a lot more. We also became acquainted (not personally, just through blog world) with a couple of families that had adopted children from Haiti. Milo and I discussed this a few times and it was just one of those things that we tucked in the back of our minds for later. Fast forward to the day Josiah died. Milo and I were making that awful drive back to Charleston to say good-bye to our son when Milo listened a voicemail on his phone. It was from an adoption agency asking us if we would financially support children in Haiti while adoption was closed due to the devastating earthquake. We could not believe this phone call and it's timing after the conversations we had about adopting from Haiti. Why this call? Why this moment? Again, all we could do at that point was tuck it away in the back of our minds for later. So you can see why we felt a connection to Darrick and Jodi when we found out they had adopted a child from Haiti. We then listened to an interview they had done on a Christian radio station about their adoption story. Part of their story is this...

Prior to adopting Isaac they were all set to adopt another little boy. They had gone to Haiti and met him. They were all set to bring him home when out of now where Jodi got a phone call telling her that their baby had died. They were devastated by this news. In this interview Jodi shares this little boys birthday… May 20th, the same day as Josiah's birthday. Milo and I couldn't believe this connection.

On the fourth of July, we were in Buffalo visiting my family and so we decided that we wanted to go to Darrick's gathering and meet them. After their gathering with their core group we met them for lunch. After some pleasantries Milo and I began telling them who we were and naturally started with whats been going on in the last year with our son Josiah. As I'm telling our story Jodi begins crying (more than I'm used to people crying) and I'm not sure why. She finally interrupts me and says, "Erin, the name God gave me for our baby that we were in the process of adopting was Josiah." I couldn't believe this. His birthday was the same as Josiah's and they were going to name him Josiah when the adoption finalized. We continued to talk and eventually the conversation turned away from "our Josiah's" to the church. We then found one more connection. The first time Jodi and Darrick met with a small group of people with the intention of building a core team that would eventually launch theWELL was January 24, 2010 the very day that Josiah died.

We left that day just in awe of these connections. We couldn't simply say these things were just coincidences. We just knew they were from God, but what did all this mean? How would this all play out in the future? I had been praying earlier that day that God would make it clear to me if we needed to keep pursuing the possibility of serving with theWELL even though at this point it was not even a job. God answered that prayer. It was clear that we needed to keep pursuing, not knowing how it would turn out.

There is much more to share about how we came to this decision but I don't have the time right now to get it all down. So I will just say this. We did not know what to make of all these connections with Darrick and Jodi's story and Josiah, but as things began to fall into place and the doors began to open for Milo to work at theWELL it became clear what God had given us, especially me. He had given us this connection with Darrick and Jodi to provide me comfort. God knew my fears of leaving behind Josiah's story if we ever moved from here. I believe God speaks to us in ways we need to hear and I needed to know that Josiah's life would not be forgotten and that it would still be used to impact others. I truly believe God orchestrated all of this to provide me comfort and conformation in this huge decision. To think that the day our world came crashing down was the same day God was birthing something new for our family. That is the kind of love He shows his children. We could not have created this. Only an all knowing, all powerful, loving God could have put this all together and I can't deny it.

A New Milestone

2010-09-29T15:29:00.004-03:00

Today officially marks the day that we have lost Josiah longer than we had him. He was with us for 8 months and 4 days and we have now been without him for 8 months and 5 days. I probably wouldn't have blogged about it but our crossbridge family wrote this post about our family and it touched me greatly that they remembered this milestone.

Please pray with us tonight that God will pour out peaceful blessings on the Wilson family tonight. After losing a child surely many days are a tender milestone.
Milo said it best 'the 24th was a tough day, but today the 28th is also hard, because Josiah was alive for 8 months and 4 days. From now on, we will always have lost him for longer than we had him.'
Those words have burned in my ears and trickled into my heart all day. We love the Wilsons and constantly think of them and remember them in prayer. Still, God moves. We call on the Lord for the pending offer on their home to close with blessing, abundance, and peace. We petition Him to bless their new life and ministry in Buffalo. In Buffalo, God has a purpose for the Wilson's hearts and souls that will continue to leave an indelible mark on countless other lives. Father, please bless them according to the measure that they have blessed us and that you have enabled us to bless them. Thank you Lord for calling us to serve them in your name. Bless them indeed, Lord, lavishly. Amen.

Thank you for praying for us.

American Heart Walk

2010-09-21T13:44:00.002-03:00

We are participating in the American Heart Walk in Charleston this Saturday. We walked last year while we were there. Lots of other heart families come each year for this event. It was fun last year to meet lots of families that at that point we only knew through our blog and facebook. There is a pediatric cardiology reunion at the children's museum on Saturday night that the girls will love. I've had mixed feelings about going this year. Last year it was a little difficult because I didn't have a baby to show off, he was still in the hospital. This year I am looking forward to seeing people but it's even harder not to have a baby to show off. Last year I remember walking by a table that said "Heart Disease Survivors." It had free t-shirts and hats for those who had won the battle against heart disease. I remember last year thinking, "Well, I guess we don't count this year because we haven't left the hospital, maybe next year." That has bothered me lately. I am a competitive person and when you count heart disease as a win or loss. We lost. So we will walk this year in memory of our son and raise money for the those whose lives are still affected by congenital heart disease. We choose to raise money in hopes for a win for other precious babies like our Josiah.

If you would like to donate funds to the american heart association in memory of Josiah you can follow this link to our team donation page. Thank you in advance for your support.

-A heart that holds on

Why Croatia?

2010-08-25T23:14:00.002-03:00

Many people have asked us why we are taking our family to Croatia to vacation for two weeks. We are going to visit our very dear friends the Bohalls. Jeremy and Milo were great friends in the Marine Corps and Jeremy was Milo's best man. He married an amazing woman that he met while in college. Petra is originally from Croatia. Shortly after Jeremy and Petra got married they moved back to Croatia to serve as missionaries. We are so thrilled to have the opportunity to visit them. They are great friends who mean so much to us. Jeremy even flew from Boston to Charleston to visit us and meet Josiah when he only had a spare 24hours during his visit to the states this past summer. We are forever grateful that he met our son.

We have been wanting to make this trip for several years now but we have always had an excuse to put it off. I was pregnant, I had a newborn, I had a toddler. Then Josiah came along and we realized that we missed our chance. Milo and I felt regret that we didn't make a trip to Croatia when we could have. There are things when your son is so medically fragile that you think but don't verbalize. One of those things for both us was the thought that if Josiah died we wanted to take the trip to Croatia as a family. We realized a few weeks after Josiah died that we had both been thinking this. So in the light of trying to live moments to the fullest we started making plans to visit our friends. I know our girls probably won't appreciate this vacation or for that matter even remember it but we are taking the opportunity while we have it and if the opportunity arises when the girls are older to take a big trip like this then we'll take it too.

We are going to be spending a week on the coast of Croatia enjoying the Adriatic Sea. Then we will spend a week at Jeremy and Petra's house. We are very excited to see our friends,their two boys and all the spectacular sites Croatia has to offer. But we are also getting nervous about traveling so far with two pre-schoolers. I read an article that suggested you bring one snack and one new toy for every hour that you travel… thats 16 snacks and 16 new toys! That's not going to happen! I did buy a few cool new travel games, have the ipod loaded with preschool apps, headphones and dvd players, along with some benedryl for back-up!

Looking forward to an awesome vacation as a family.

-A heart that holds on

Let the blogging resume!

2010-08-25T16:19:00.005-03:00

It's been really hard to blog as of recent because what God has been doing in our lives lately has had to stay between Milo and I. But the cat is out of the bag now so I feel like I can speak freely again. This past Sunday, Milo shared with our church that God is calling us to be a part of a church plant in Buffalo, NY. So Milo will be stepping down as the worship and youth pastor at Ridgeview church on October 24th and we will be moving to Buffalo. This has been a very difficult decision because we love Ridgeview and it's people but we can't deny what God has been doing in our lives. I'm excited to get to share that now!

We are incredibly busy with plans for our big trip to Croatia next week, getting our house ready to be put on the market and beginning the process of packing up a house that was pretty empty when we moved into it just as Milo and I. Now 6 years and 3 kids later it is packed full! So I make no promises about blogging but I have lots to tell and hopefully can make the time to sit down and write. We'll see!

PS. Look, I was able to add a new label to my blog with this post. I haven't written a post since Josiah died that was not labeled grieving. That's a huge step… ironic that the label is moving. I feel that label is literal as well as figurative, we are moving, not moving on but moving forward in this new life God has blessed us with.

-A Heart that Holds On

New Old Pictures!

2010-08-03T21:34:00.004-03:00

I am always beyond thrilled when someone sends me pictures they have of Josiah. We have "lots" of pictures but it will never be enough. My sister-in-law, Lydia, sent me these pictures today and I am so excited to have them. The far to few days we were home with Josiah we so incredibly busy that we barley had time to take pictures. The pictures here doubled what I had of home. We never took any pictures of Josiah's room and I've always been bummed by that. One of our friends who recently lost their daughter to HLHS told me how she was taking pictures of her daughter's room before she took it down. I could kick myself for not thinking of that. So to receive these pictures which include some pictures of Josiah's room, mainly his equipment (that's really all that made up his room anyway) made me so grateful.

So here are the pictures starting with pictures of some of Josiah's equipment

A 130lb oxygen tank sitting at our front door- Welcome!

His O2 concentrator that converted room air (23% oxygen) into the 40% oxygen he needed

Josiah's changing table loaded down with monitors, suctioning machines and compressor, oh and some normal baby things diapers!

His ventilator, tubing and IV pole with his feeding pump

These by no means show all Josiah's equipment and supplies but at least it's something. And now pictures of our beautiful boy in his room!

So peacefully asleep in his own bed. Beautiful.

As always fingers in his mouth

I love this one. I just love seeing the blue bumper instead of the hospital bed rails.

Josiah and beautiful Aunt Lydia. Thanks so much for sending me these pictures.

It means so much to me to have received these pictures, so if anyone else has pictures of our beautiful boy please send them my way!

You know it's been too long when

2010-07-20T15:58:00.000-03:00

A long time ago I wrote this post about knowing when you've been in the PCICU too long. Today I have a reason to know I've been away from the PCICU to long. When one of the nurses who had a baby shortly after Josiah was born came back from maternity leave I knew we had been in the PCICU too long, but today I just found out she had her second baby! WOW! Way to go Alicia

A little healing

2010-07-12T16:17:00.005-03:00

I haven’t blogged in a while and when people ask me why I’m not blogging my response usually is, “there is nothing new, nothing worth sharing.” I’ve had a rough past month struggling with the mom and wife I want to be in the middle of grief. Anyway this past week we traveled as a family back to Buffalo where Milo and I both grew up. We came home to see family and it’s been wonderful.

On Sunday Milo and I went to this new church plant in one of the suburbs of Buffalo. It’s a lot like Ridgeview and we wanted to check out what new churches were doing in the Buffalo area. It was great. We met lots of great people who we had lots of connections to. The best part for me though was what I experienced through the worship service. God really spoke to my heart and worked in a healing way. The pastor spoke from this passage in 2 corinthians chapter 3 where Paul talks about how before we turn to Christ there is a veil over our hearts which keeps us from seeing the full glory of God but that when we turn to Christ that veil is removed and our hearts a made aware of the glory of God. Through the pastors sermon I had this overwhelming feeling of gratefulness that the veil has been removed from my heart and that I do know and see God’s glory. What a privilege I have been given. I just felt God telling me to rest in His glory, to let His glory surround me and comfort me. I tend to loose sight of His glory and the awesomeness that it is. As the final song played I felt God speak to me again. The song was a song by Hillsong called “Soon” and the words of the chorus are this:

I will be with the One I love

With unveiled face I’ll see Him

There my soul will be satisfied

Soon and very soon

Obviously, this song was talking about heaven being the place where we will completely see God’s glory and where we will be satisfied. I have never been one to really identify with songs that talk about how wonderful it will be to one day be in heaven with God. I think I have a skewed view on longing for heaven. See I really like my life, I love being a mom, a wife, a daughter, a friend. I love serving God here on earth. I think it’s a great place and I believe God’s got great things in store for us here on earth. So I’ve never really been one to long for heaven and songs about heaven have never really resonated with me. They obviously do more so now, after Josiah’s death, but this song on Sunday along with the pastors message really spoke to me. I’m going to try and explain this but it might not come out right. You see I’ve been holding on to this thought that despite how wonderful heaven is wouldn’t Josiah be happier here with his mom and dad and beautiful sisters. I can say given his circumstance with all his medical problems he’s better off in heaven where he is not suffering but I’ve never been able to say given him here on earth whole and healthy or him in heaven whole and healthy, that heaven is better. I think of him as a baby who needs his mother and what God told me through this service was, yes Josiah is a baby, but more importantly he is one of God’s created children and as a child of God he is completely satisfied in God’s presence. God allowed me in the service to be reminded of God’s glory and the glimpse of it we get when we follow him here on earth. Then I was able to realize how privileged Josiah is to be able to see the complete glory of God as he sits with Him in heaven. I’ve always felt a little sorry for Josiah, because in my mind wouldn’t he rather be with his mommy and daddy and sisters. I guess that’s part of wishing to still be needed by him. But this past Sunday God showed me just how lucky or privileged Josiah is to be with His creator and that was very healing and freeing for me as his mother.

-A Heart that Holds On

riding the swamp rabbit trail

2010-06-18T10:33:00.002-03:00

it is amazing how hard it is to ride an adult bike as slow as these girls are going!

Today's Bible Reading

2010-06-02T16:09:00.005-03:00

So after I wrote the post last this is what I read today. It's from first Corinthians chapter 13. This is a well know chapter. The chapter commonly referred to as the "love chapter." The part many of us know well and can probably quote goes,

"⁴Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶Love does not delight in evil but rejoices with the truth. ⁷It always protects, always trusts, always hopes, always perseveres.

This is where we normally stop, but here's what comes next

⁸Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. ⁹For we know in part and we prophesy in part, ¹⁰but when perfection comes, the imperfect disappears. ¹¹When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me. ¹²Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

¹³And now these three remain: faith, hope and love. But the greatest of these is love.

We usually hear the first part of vs. 8 "Love never fails" and the last verse in the chapter vs. 13. But the verses in between struck me today in light of what I posted yesterday. Paul gives this amazing description of what true love is, love that we should strive to demonstrate to all people, but ultimately God is the only one who can love this perfectly. This passage on love is a description of God's character. After this description of love Paul says, love never fails and then he goes on to give us a glimpse of heaven. He tells us that right now we know only in part but when perfection comes (being in the presence of Jesus in heaven) the imperfect disappears. Right now "we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known."

I just love how this passage is within this great description of what love is. What an encouragement to me today to read, "Love never fails" followed by this glimpse of eternity where all things will be made clear.

One thing I am certain that walking through this journey of suffering has taught me is to love and appreciate the mystery that God is. It is a characteristic of His that I find beautiful.

Here is the chorus to an Aaron Ivey song called "Beautiful Mystery" that has meant so much to me in the past year.

The Sovereign Lord, will be my strength
Beautiful mystery
Through the suffering and loss, your mercy remains
I will trust in thee

The Gospels and Healing?

2010-06-01T15:34:00.004-03:00

Milo and I have just finished reading through the Gospels. We read through them in large chunks so it only took us about 10 days. We've been working through this Bible reading plan and I've been looking forward to the point when we read the Gospels, so I was very surprised to find myself crying every day as I read the Gospels. I just kept reading over and over about all the miraculous healing Jesus did. The theme is "your faith has healed you." Jesus tells his followers that over and over when he heals them from their physical aliments. He also tells his disciples many times about how their faith can do anything. All that, faith as small as a mustard seed can move mountains stuff, sure made me question things. Not to worry, I'm not losing my faith our doubting my beliefs. It's just who I am. It was how I was raised. I tend to question things because I feel like it makes me believe more in the truth I find. So here I am reading through the Gospels the books of the Bible that are suppose to bring me such hope and I'm crying because Jesus heals everyone he comes in contact with. There are no stories in the Gospels ( I don't think, I suppose I could have missed one) when Jesus chooses not to heal and even when he didn't heal right away he raised dead people back to life. As I read these miracles over and over I couldn't help but ask why He didn't choose to heal my son. I believe He could have. I remember sitting at the funeral home in Charleston the day after Josiah died and them telling me that they had already brought Josiah's body there from the morgue. I sat there thinking Jesus could still bring him back to life. Couldn't he? Then I go back to what Jesus said over and over, "go, your faith has healed you." So of course I question. I think I have enough faith but maybe I don't.

I don't really know what else to say here, right now. This is one of those post that I'm not sure I should publish. Believe me when I say I don't mind being in this place where I question my faith. I enjoy questioning why I believe what I believe. It makes it more real to me. I don't have answers for why God didn't heal Josiah and I probably never will but I will continue to seek how that aligns with my belief in a God who loves me deeply.

- A Heart That Hold's On

Happy Birthday, Hazyl Grace!

2010-05-30T09:08:00.003-03:00

We had such a wonderful day celebrating Hazyl's 3rd birthday yesterday. When did she get so big? We spent the day at my parents house out at the lake. It was a great day to be out on the water with family and friends. We really did have an amazing day. My mom was wonderful as always, and made a fantastic dinner for all of us. She's wonderful to do all that she did. It just was really nice to spend the day with all the grandparents, the Dunsters and the Gibbons!

Hazyl was very excited about having "tools for workin"
Mommy spent 3 hours on making this fish cake! I'm getting better at this cake decorating thing! I was actually pretty proud of this one. That's a huge improvement for me!

I love these pictures of Hazyl out at the lake because they capture her. You can't see her face and their sort of far away because Hazyl never sits still for a picture! She's too busy, doing her own thing! She spent a couple of hours building this rock "wall." She'd walk down the beach and find rocks, the bigger the better and carry them back to continue building. None of the other kids did it. Just Hazyl by herself, doing her own thing. I love that about her. She's absolutely beautiful!

Sweet Angel Maia

2010-05-27T16:20:00.014-03:00

I have always been drawn to this precious baby, Maia. I think partly because she has always reminded me of Daylia (the picture on top is Maia and the one on the right is a photo of Daylia when she was 6 months old), with her big brown eyes, long eyelashes and such sweet cheeks. Maia is beautiful and we are so saddened by her passing.

I remember the day Maia was born. I saw her parents, Shannon and Elias came into visit her for the first time and I thought there is no way that woman just gave birth. Shannon is as beautiful as her daughter. I remember the first time I spoke with Elias in the waiting room. The usual greetings, "Hi, My son has HLHS. How is your little girl?" After a conversation about Maia and how she was handling HLHS so far Elias asked the question I began to dread, "How old is your baby?" "8 weeks," I had to tell him. We were just beginning the period of time where I had to explain that Josiah's HLHS was a little more complicated than the average HLHS and not to worry their stay hopefully wouldn't be as long.

I remember the day Maia had her first surgery and we were all sitting in the waiting room when Dr. Bradley came in to tell them how Maia had done. They didn't get the news that they wanted to hear. We were sitting on the opposite side of the waiting room and I just couldn't shake the Holy Spirit from telling me to go pray with their family who was waiting. I don't do that, but I really felt God telling me to move. So I prayed for their precious Maia in tears because I knew how badly they were hurting.

I remember watching Elias with his notebook and pen sitting beside Maia's bed writing down EVERYTHING the nurses and doctors were telling him. I asked him one day what he was reading at her bedside. It was a TEXTBOOK about HLHS! Shannon and Elias are amazing parents. They wanted to know everything there was to know about Maia's condition.

I remember the day they moved to 7C. I was so excited for them and grateful that Maia had bounced back so well from her surgery. I loved seeing Maia act like such a "normal" baby. It gave me such hope. They went home shortly after that but we got to see them every once and a while when they came for check-ups.

I remember the day they got readmitted because Maia was ready for her Glenn. I have to say I might have been a little happy they were back (not for Maia's sake but because I missed them). It's lonely in the PCICU sometimes. Maia did great through this surgery and then the drainage started. Oh the drainage that so many heart babies struggle with. That's when Shannon and I really started spending a lot of time together. Sitting in their penthouse sweet on 7C eating lunch while I was kicked out of the PCICU researching MILK. All kinds of milk! Skimmed breast milk, skimmed cows milk, skimmed goats milk. We just wanted desperately to find something that would help our babies heal. The countless hours that Shannon pumped and skimmed breast milk in 15cc tubes amazed me. She was a champion for her daughter. I remember the night at 1am that Milo and Elias planned their covert operation to sneak the centrifuge we were using out of the PCICU and onto 7C so they could use it. No one in either unit batted an eye as these two walked around with a huge piece of equipment. Sometimes when doctors say no because of policy parents have to take matters into their own hands for their babies sake. It's better to ask for forgiveness than permission sometimes!

I remember the signs Shannon had ready to post on Maia's door. "Please don't wake for vitals" ,"Pumping", "Don't come in I'll do it myself (I think I made that one up)." Maia was just precious every time I would come visit. Her spirit amazed me in spite of the nagging chest tubes.

I remember the first time Elias showed me his graph of Maia's daily chest tube output. It was because he and Shannon were such amazing advocates for their daughter that they got to take her home with chest tubes in place. I don't think Dr. Bradley has ever done that before and it is a testimony of what wonderful parents Shannon and Elias are.

I remember seeing them walk back into the hospital on the evening of Christmas Day. They were just so grateful to have had the opportunity to have Maia home for Christmas. Even though they were in and out of the hospital during the next few months I know they had some precious time with Maia at home that they will never forget.

I remember when Maia had to have her 3rd open heart surgery in March. This one was unexpected and began the very long and difficult journey Maia and her parents have been on for the past 3 months. We have been so worried about Maia and prayed for her and her family everyday. The Deebs have never been far from our hearts and mind. There are many reasons we are grateful for the journey we have been on with Josiah and one of them is the Deebs. We are so grateful for our paths crossing. We share a bond that will keep our hearts close forever. We are grieving with them this week as their precious Maia has gone to heaven. We are all to familiar with their pain and can't express the sorrow we feel for their great loss. We love this family dearly. May God's peace surround them.

First Glimpse of our family pictures!

2010-05-26T20:10:00.005-03:00

Here are the first images we got back from the photographer today! Beautiful. Thank you so much Valerie!

Praying for Maia

2010-05-25T16:19:00.002-03:00

We've been praying for our dear heart friends the Deebs and their precious baby girl Maia for many months now. Her parents posted this earlier today entitled, "hoping for a miracle, praying for God's will." Please join us in praying for God's will whatever that may be and hoping that it means a miracle in Maia's life today.

Happy Birthday Josiah!

2010-05-20T20:54:00.002-03:00

we love you and miss you!

A Birthday Tradition

2010-05-20T01:15:00.000-03:00

It's always been a birthday tradition in my family to tell your birth story on the eve of your birthday, my mom still tells me my birth story every year and I've been telling my girls theirs. So I figured I would tell Josiah his tonight and seeing as how I never got around to blogging about the day he was born I thought I would share it here.

Dear Josiah,

One year ago today your mommy and daddy were preparing for the biggest day of our life. We had known for about 4 months that you were going to be very sick when you were born and we knew you were going to need immediate medical attention. So there was a very specific plan put in place for your birth. We were to arrive at the hospital at 5am and so we tried to go to sleep early. Mommy packed a bag of clothes for her and daddy and some things that I hoped you could use like blankets and a hat. We got up at 4am, got ourselves ready, kissed your big sisters good-bye and headed to the hospital. It was very quiet and lonely in the car and on the road. Both your mommy and daddy were very nervous. We got to the hospital, parked in the best parking spot ever (because there was no one else there), you know your daddy was proud of that! We walked into the hospital, which seemed so foreign and had to ask for directions. Little did we know that one day we would know that place better than our hometown. We headed up to the 4th floor, to the main OR waiting room and waited. People thought we were in the wrong place and I had to keep telling them that yes, I was delivering you in the main OR. You see a normal c-section would have taken place on the labor and delivery floor but you were not going to be a normal c-section. They finally called your mommy's name and took us back to the pre-op area. We were put in the tiniest pre-op room there was, which was a big mistake, because I swear the entire hospital stopped in to see us and introduce themselves. The hardest part about that time in pre-op was my begging the doctors to allow your daddy to be in the OR with us. They had said no and then they said yes and took your daddy to another area to get him dressed properly to be in the OR. I was so happy they had changed their minds. About 15 minutes later your daddy came back dressed the same way he was when he left me and had to tell me that the doctors had yet again changed their minds and said no. I was devastated and that's when I lost control of my emotions. I was so scared, I was scared of surgery, I was scared for your safety and I just wanted your daddy with me. They finally wheeled me back to the OR around 7am and things really began to move fast. They wheeled me into this operating room full of people, probably 25-30 people, and everyone was trying to introduce themselves to me. Anesthesia sat me up and told me to be still while they gave me a spinal, all they while people were still introducing themselves to me. I was trying so hard not to cry but that's all I could do. I was so scared. It was loud and chaotic in the OR when someone finally stood up and told everyone to quit talking. She told the people in the room if they were a student or a resident they had to leave there were just too many people.

-A heart that holds on

Josiah's 1st Birthday is coming

2010-05-16T18:20:00.004-03:00

So here begins the season of, "this day last year we were…" On this day last year we had relocated to Charleston, were introduced to Melissa and the wonderful people of Crossbridge that would so faithfully care for us over the next 8 months. We were settling into our first condo knowing we had it for six weeks and that would be plenty of time for our stay in Charleston!

Which brings us to the next event coming, Josiah's birth. A couple of weeks ago I was really dreading his birthday coming up, mainly because I felt like I wasn't going to find the perfect (for our family) way of celebrating his birthday. I didn't know what to do. Did we celebrate here in Greer with our family and friends or did we want to go to Charleston as a family. A week and a half ago I followed some links from another heart mom's blog and ended up on a website called "To Write Their Names in the Sand." It is this woman's web-site who has lost a baby of her own and she takes names of babies that have died. She writes their names in the sand on this beach in Australia where she lives and then takes beautiful sunset pictures of the babies name. The images are very moving. So here I was on this website in Australia and it came to me, I knew what I wanted to do to honor Josiah's birthday. I was looking at these pictures and the image of the four of us siting at the beach with Josiah's name in the sand got stuck in my head. One of the things I regret is not having any quality pictures of the 5 of us. I actually only have one picture of all of us from when Josiah was about 2 months old. So that's what I wanted to do was have family pictures taken with Josiah represented. In my head this image was beautiful and I knew that my Kodak easy share camera could not capture the beauty. So I knew we would have to have this professionally done. From this website in Australia I followed a rabbit trail of links to this organization called "Now I lay me down to sleep." This is an international organization of photographers that donates their time to photographing families whose newborns are dying. I was frustrated when I started looking at this site because I wished I had known about it while we were in the hospital with Josiah. So I dug deeper on the website to find out if there were photographers in Charleston that were apart of the organization. I was doing this because I wanted to pass on this great resource to our friends in the PCICU. Sure enough there was a list of about 6 photographers in the Charleston area. As I looked at the list I felt like I should e-mail one of them and explain our story, share my idea of what I wanted to do while acknowledging that I realized this is not what the organization is normally for. So I picked a name and sent an e-mail at 11:00pm. At 11:05pm I got a response back saying, OH ERIN, YES! The response then went on to say how this woman that I e-mailed knew our story and in fact follows our blog. She apologized that we had not met while Josiah was alive but that she would love to do this for our family now. I started crying immediately. I just couldn't believe it and just truly felt like God's hand put that together for us. I was overjoyed because I felt such relief that I found a way to celebrate Josiah's birthday in a way that was perfect for our family. It has truly changed my perspective on Josiah's birthday coming up. I am so incredibly grateful for this photographer to take time out of her incredibly busy schedule to do this for our family.

So that's what we are doing for Josiah's birthday, going to Charleston, having family pictures taken on the beach, a place where we found peace and comfort for us as well as a place of joy as we played with our girls. We hope to see some of our Charleston friends and just enjoy our family as we remember Josiah's life. This week is going to be difficult as I just can't believe Josiah would be turning one but I'm looking forward to honoring Josiah while we visit his city.

you wish you had one of these?

2010-05-12T19:18:00.001-03:00

Happy Mother's Day

2010-05-08T22:00:00.003-03:00

Daylia has decided that this is going to be the, "Best Mother's Day Ever." I'm grateful for her enthusiasm this year. We have had a great weekend (our weekends start Thursday night because Milo doesn't work on Fridays!). We went out to my parents lake house on Thursday evening. Milo's sister and her fiance came too. We had a great night and then spent all day Friday out on the lake. It was a beautiful day. I even went knee boarding and got up on the first try. This was the first time I've knee boarded since I was pregnant with Daylia 5 years ago. After our fun on the lake we sent Aunt Rae Rae and JohnMark with the girls to Nana and Papa's house, so Milo and I had some time to ourselves. We had a really great evening, talked a lot about Josiah which was nice and then we got in some great workouts this morning. It was a great day!

Then Milo surprised me with my mother's day present when we got home. He had a tree planted in our front yard in honor of Josiah. It's a type of red bud tree. It will flower in late March early April and it's leaves are red and grow in a heart shape. It's beautiful and such a perfect tree. I love it! I can't wait to plant flowers in the bed around it.

I'm praying for all our heart mom friends tonight. Praying for those who are enjoying and appreciating their heart babies this mother's day. Praying for strength and endurance for those who's little ones are in the hospital this mother's day. And especially on my heart this year are all of us who are spending our first mother's day with a piece of us in heaven. It makes me really sad to think of how many of the moms I met this year have babies who have died because of Congenital Heart Disease. Praying for peace for all these special moms. Maybe this year technology and methods of practice will reach higher heights so that next mother's day there will be fewer moms spending their first mother's day with a child in heaven.

Thank you Milo for making this mother's day special. I love you.

-A Heart that Holds On

Slip and Slide Fun!

2010-05-07T00:09:00.002-03:00

I keep thinking I need to blog more about the fun I have with our precious girls but I'm just not that good at that! Today I took some video of the girls in the backyard. We pulled out the slip and slide for the first time this year. Once we got it set up and the girls started playing I remembered when and why I bought it. I bought it last year on Mother's day weekend. I remember purchasing it thinking it would be a great activity for the girls during the summer while I would be spending lots of time with Josiah once he came home. One year ago, I never would have thought we wouldn't return home that summer.

It was nice to have the slip and slide out today. We had a lot of fun playing together. I actually got in! The girls were very impressed by how fast I went! It was especially nice to remember last year not being able to play with them because I was sooo pregnant but this year getting to partake in all the slip and slide fun. This video doesn't do it justice. The girls haven't quite figured out how to slide on their own, so I was pushing them pretty fast down the slide, but because I was the only one home I couldn't get that fun on video. Maybe we'll get some better footage when Milo is home.

I really enjoyed my girls today!

Mother's Day is Coming

2010-05-06T01:01:00.004-03:00

Mother's Day is Sunday and I'm feeling that it's the start of what seems like is going to be a difficult month. I sometimes write posts that I don't publish because it's too personal or too painful or I'm just not ready to share. With mother's day coming I felt like sharing an excerpt of one I wrote about a month ago.

Being a mom whose child has died catches me off guard so often and in so many different ways. It hits me that that is who I am and I wonder how did this happen, when did this happen? Sunday, January 24th, 2010 is when I became who I am. That is a day that will define me forever. I suppose that as time goes by it may not define as much of me as it does today but it will always define me.

I am a very different mom this mother's day. One that I never wanted to be. I remember speaking with a friend before Josiah was born, who himself was going through a very difficult medical situation, telling him how I was ready to be a mom of a special needs child but that I did not want to be a mom who had lost a child. No one wants to be that mom. Now, I am one. I am a mom whose son has died and I feel like a completely different person. I have told several people how I literally don't see the same person in the mirror anymore. My mom joked that maybe it was my new haircut! I have honestly walked by a mirror glanced at the reflection and thought, "that's not me." It really has caught me off guard. Sometimes I just stand and stare into the mirror. I feel like the person in the reflection has aged; physically, emotionally, experientially. I guess it happened so fast that I don't recognize the reflection. I'm beginning to; I'm beginning to realize it's me and embrace it. I'm beginning to see some of the beauty of this journey.

Here is the continuation of the excerpt above.

There is another day that defines me though. July 7th, 1997. This is the day I became who I am- a follower of Christ. This is the day that I accepted Jesus' love for me and understood who I was in light of Him and that was a person in need of God. Because of that day in July, 13 years ago, I walk through this differently. I walk though this with hope. While this is not easy and I certainly wish I wasn't doing this there is hope in Jesus. While there are times that I don't understand how or why I became a mother whose child has died there is hope in Jesus name. Because Jesus conquered death there is hope. There is hope for eternity and hope for something bigger and greater than my understanding, there is hope for a love that never fails. I don't always understand it but because of that day in July of 1997 I have hope and hope gets me through these days.

-A Heart that Hold's On

Trach Change Day

2010-04-25T09:07:00.003-03:00

Milo got this reminder on Thursday in his inbox from Google Calendar, "Trach Change day." I didn't realize he was getting these weekly reminders still. In December, when we were getting ready to bring Josiah home, we spent 2 nights "rooming in" with him, proving that we were going to be able to keep up with his care. Through this, we realized that we needed a schedule to keep us on track with his many tasks. There were some things we did 4 times a day, some things daily, some things 3 times a week, some things weekly. It was all so much to keep track of, so we set up a Google Calendar, with each of his tasks from Chest Physical Therapy, to medications, to equipment changes and on and on and on. By the time we were finished setting it up it would say, "viewing task 1 of 47" or "viewing task 17 of 43" for the day. There was a lot to do to manage Josiah's care. Thursday's were trach change day where we would take the trach tube out of his neck and put a fresh, clean one in.

"They" say that one part of grief is anger. I'm not a real angry person. It's not like me to be angry, so as much as I may feel anger these reminders from Google calendar make me angry (but I won't erase them). They make me angry because it reminds me that we were good at this. We were good at taking care of Josiah. For crying out loud we experienced the ultimate test less than 12 hours after we brought him home for the first time when we had to preform CPR and actually save his life. We did it. We knew what to do and we responded like seasoned PCICU staff! Some people have said to us, "God gave you Josiah because he knew you could handle it." I wanted to handle a whole lot more than we were given. We had Josiah home for 3 days and it was crazy and scary and overwhelming. At times I wondered how we would ever keep this pace up. But in just 3 short days we were beginning to settle in. I even had 3 children all napping under one roof at one time and Milo was at work ( I did have a nurse and Milo's parents there to help, but still we were making it work). The first night we were home and we had to do CPR on Josiah, call 911 and be rushed to the ER, the attending doctor that day told us that we didn't have to go home if we didn't want to. He said, "if your not comfortable having him at home, Josiah has many reason to grant him an extended stay in the ICU in Greenville." We left the hospital an hour and a half after that conversation. We wanted Josiah home with us and we were confident we could do it. Bringing Josiah home from Greenville memorial that day we were asked if we wanted an ambulance to take us and we declined. We couldn't take an ambulance everywhere we would need to go with Josiah so we thought we better figure out how we were going to do it ourselves. Milo went home rearranged things in our minivan and developed a plan for how we would transport Josiah in our van. He came back to the hospital to pick us up and we never had to unhook Josiah from the ventilator or any of his monitors. Milo had come up with a way for us to be able to lift the entire stroller right into the minivan, lock it into place, and only move Josiah in his car seat from the stroller to the base. Milo figured out where I was going to be able to sit to see Josiah and watch his monitors as we drove. This probably doesn't make any sense unless you had seen Josiah and all his equipment, but this was a huge feat that I know John our respiratory therapist and many of our nurses in Charleston would have been so proud of. It was such a good feeling to know that we were doing it. We were good, capable, intelligent, organized parents who could handle this. We had an excellent support system of family and friends that could help us. We were parents with the ability and personality it would take to raise Josiah, not all people could do that, but I believe we could have. Talking about how good we were at all this may sound prideful and it probably is but I know that God gave us the personalities, intelligence and support system to be as good at this as we were. All this to make the point that it makes me angry to think about how great we were at taking care of Josiah and we only got to do it for three days. (I seriously just got a pop up reminder that said "Trach collar trials, increasing 5 mins per day, starts in 10 minutes) Of course, I'm grateful for the three days we had at home with Josiah, I will cherish those days forever, it was something I prayed for since before he was born. But as you know with all good things in life, when you get a taste of something good it just makes you want more. I will always be grateful for what we had but I think I would fooling myself if I didn't say I wanted more than I was given. Who wouldn't want more days with their child no matter how difficult (for us) they might be.

Answering Questions

2010-04-18T00:46:00.013-03:00

Our blog post show up here on the wilsonheart.com and also as notes on my facebook page, so we get comments here but also on facebook. We actually receive more comments on facebook because for some reason thewilsonheart has never been the easiest place to post comments. The last post on here, which milo wrote, was an invitation to ask us anything, so I guess that means I have to respond to those questions. I'll try my best some of the questions were asked on here and some on facebook. Here goes….

Stephanie Quintero on April 17, 2010 2:23 PM said...

OK, I have a few questions. What was the shunt that clotted off? Was that what kept the atrial septum open? Do you torture yourself because you weren't there when he passed? I sure hope not! I have often thought that it would be easy to feel guilty about that. But, I hope you don't because I still think it was for the best and I am thankful that you were together, I think that was part of God's plan. Here is a real challenger of a question. What was that ride back to Charleston like? What do you think, talk about, prepare? I remember getting Melissa's call and finding out that ya'll were driving back. I remember thinking that this was probably the longest ride ever.
On a different note, how is Ali doing? She was in a sledding or skiing accident in Buffalo right before Josiah passed, correct? I never saw an update about her.

The shunt that clotted off, which was most likely cause of Josiah's death, was something that was placed in Josiah's heart when he was 13 days old during his first open heart surgery. This is what Josiah's heart looked like after his Norwood surgery.

1 - Blalock-Taussig shunt (temporary)
2 - atrial septum removed
3 - patch where pulmonary trunk is disconnected from left and right pulmonary artery
4 - aorta and pulmonary trunk anastomosed together and the aorta made larger
Blood flows through the anastomosed aorta and pulmonary trunk to the aortic arch. A shunt connects the aorta to the pulmonary arteries, providing the lungs with blood to oxygenate.

Josiah's shunt (a BT shunt) depicted by the #1 was a GorTex tube placed to connect the new aorta they made to the pulmonary arteries. So when Josiah's one functioning ventricle would squeeze, it would send blood up the aorta and to his body, but some of it would fall passively through that BT shunt and go to his pulmonary arteries and out to his lungs, where it would pick up oxygen and then be sent back to his heart. It was the only way for blood to get to his lungs and become oxygenated. This is not the most efficient way for his heart and lungs to work and that's why getting to the second stage surgery the Glenn was so crucial. Unfortunately, Josiah's lungs never got well enough to move on to the Glenn. One of the risks of this shunt is it clotting off, meaning that a blood clot could form and block blood from being able to flow through there. Josiah's shunt (I can't remember exactly) was 3-4 mm. A millimeter is about the size of a grain of sugar, so this tube was no more than 3-4 grains of sugar. Josiah was on an aspirin regimen to keep his blood thinned out, but the doctors are pretty convinced that a clot formed and got stuck there. When that happened there was no way for blood to get to his lungs which meant that the blood being pumped to his body quickly lost oxygen and his body received no oxygen. For Josiah, in his condition, this all became fatal very quickly.

I don't torture myself for not being there when Josiah died. I do believe it was part of God's plan. There was a reason I felt such a strong urge to make the 4 hour drive home on Saturday afternoon to be with my husband. I certainly wish we had both been there. But if the choice was me being there by myself and having to call Milo and wait 4 hours until he could get there knowing he had to make that drive himself or me not being there and us being together. I choose being together. However, I can't say that I'm glad I wasn't there. I'm very grateful that my parents were with him if I couldn't be and that they held him until we got there.

The drive to MUSC that afternoon was hard, very hard. Thankfully, we were still at church and were able to leave the girls with friends. We started driving while they were still doing CPR on Josiah after about 20 minutes of no phone call back from MUSC we knew he was gone. I finally called about 35 minutes down the road and spoke with the attending where I got the confirmation that we feared. I told him that I didn't know how fast "things" happened but that I needed him to do whatever he could to keep Josiah's body warm until we got there. He said he would and then we hung up. We cried, not hysterically, like I have done several times since, just cried. We sat in silence with tears rolling down our faces. Milo told me that he couldn't get the song out of his head that he was leading in church when Josiah crashed, "You make everything Glorious." I told him I was thankful we were together. We drove at a reasonable speed. There was no reason to risk an accident. It was raining. I made some phone calls to family, friends and some of Josiah's favorite nurses to let them know they were welcome to come say good-bye. Then we talked about some of the things that we had never talked about but were always looming in the back of our minds. What do we do now? What do we do with Josiah's body. Do we bury his body or cremate his body? Fortunately, Milo and I agreed on cremation. The main reason being that we wouldn't know where to bury him. I couldn't stand the thought of us ever moving from Greenville and leaving his body behind. All in all, it was a fairly peaceful ride. Peaceful but achingly sad. I think it was just something we had to do. We had to make that drive because we had to hold our son and say good-bye.

You didn't ask about saying good-bye and I couldn't write about that right now anyway. It will have to be another post for another day. I planned to get to the other questions other people asked me but Stephanie drained me with those! Thanks for asking though.

We love Josiah so much. I don't know what else to say. I just love him so much.

- A heart that holds on

Grief Counseling

2010-04-16T11:36:00.003-03:00

Erin and I went to our 1st Grief Share meeting on Monday night. It was an awkward, wierd, and good feeling. Being there helps us realize the reality of our situation. Josiah is gone, and we dearly miss him. However, it also helps us to know that we are doing a good job with continuing our lives. In some of the videos we watched the other night, we heard stories about individuals who completely shut down their lives. I don't believe we have done this. We have two beautiful girls that keep us awake and alive, and who are always talking about their little brother. We are so grateful for him.... and them.

Here's what we want to ask of you our readers: our friends, and family. Continue to ask us about Josiah. Let us tell you some of the stories we forgot to write about. Let us teach you what we have learned about pediatric cardiology. Let us pick on ourselves, our nurses, and our doctors and all the things that happen in this fraternity called the PCICU. We don't want to forget, move on, or lose touch with everything that happened in the last year: good and bad.

So go ahead, ask us anything. What question have you kept quiet to "protect" us? We promise we won't be offended... we won't be angry. We will laugh, and we might cry a bit, but we need to do that too!

Going back to Charleston

2010-03-29T21:17:00.003-03:00

Last Thursday we decided to make a break for it and head to Charleston. It was sort of spur of the moment but we had been wanting to go to make a special delivery to the PCICU. While we were in the PCICU with Josiah the families were always "fighting" for the one good mobile in the unit. We knew that Taggert had it for the first 4 months we were there but after he left it was ours for the taking. There were a couple other mobiles but they all had parts missing or needed batteries. So we wanted to give the unit some new mobiles and crib toys for the babies. We also had some really fun toys we wanted to give to Josiah's physical therapy team to use with their babies.

We had all of these boxes of mobiles and toys sitting in our entry way at home and on Thursday afternoon we just thought, there's no time like the present to head to Charleston. We left around 8pm and were able to stay at one of Josiah's nurses house right downtown. We are very lucky to have the "hook-up" in Charleston now! When we started getting close to Charleston it was weird, both Milo and I said it felt like we were going home. Even Daylia was very excited. We thought she would be sleeping shortly after we started driving instead she talked most of the way about how much she loves Charleston. As we pulled into the city she got very excited about seeing the "triangle bridge" (cooper river bridge).

We went over to the hospital in the morning and dropped off the mobiles and toys. It was great to see everyone and I was really glad that they let the girls come in the unit. Most of the time children are not allowed into the unit. They occasionally made exceptions for our girls so they could come see their brother. Hazyl still sometimes asks when Josiah's going to come home and says that he is still at the hospital. So I was really glad they came into the unit with us because I was worried that Hazyl would think we went to visit Josiah. This way she got to see that Josiah was not there and hopefully realize that we did not just leave him there. We spoke with some of the staff for a while. The girls picked out a mobile to give to one of the crying babies. They were so good in the unit. We then went out to lunch with our friends the Deeb's whose little girl is in the PCICU right now. It was so good to see them. It was an encouragement to us and I hope to them as well to just be together, because sometimes it just feels so lonely.

We then went back to Colleen's so the girls could nap and then later went out to dinner with a group of people from the PCICU. We really had a great time and are very glad we went. We weren't sure how it would feel to go back there but it was great. We love that place! Someone asked me why Charleston felt like home and I realized that Charleston reminds me of Josiah. Here in Greer/Greenville nothing really reminds me of Josiah because he was never really here. And even though Josiah never really left the hospital the city still reminds me of him. When we go to the park under the Cooper River Bridge I am reminded of playing there with the girls while Josiah was alive. The beach reminds me of making the most of our time with the girls while Josiah was alive. The things we experienced in Charleston while Josiah was not physically with us we were doing them because Josiah was with us. Charleston is where we were a family of 5, not your typical family of 5, but we were still a family of 5. So going to Charleston last weekend felt great and we can't wait to go back again!

Pray for Maia

2010-03-29T10:28:00.002-03:00

Please pray Maia today. She is going back to the OR today for a couple of procedures. This sweet family needs some relief and some good news today. The Wilson's are praying for the Deeb family. Please join us.

It's the 24th

2010-03-24T15:45:00.002-03:00

It's been 2 months since Josiah passed away. I don't really now what to do on days like these. What do you call this day? Do you mark it by doing something? Do you morn more? Do you celebrate Josiah's new life? I don't know. You see, my faith tells me that Josiah is way better off in heaven where there is no more surgery, no more pain, no more medication and he is experiencing love that we can't comprehend. While I do believe that and understand that just perhaps the 24th of January was the best day of Josiah's life it was obviously the worst day of ours. So, what do I make of the days that mark this anniversary? Sadness, joy or a mix of both?

I'm not a real big fan of "father time" right now. As time moves on and we reach these milestones I feel like I am only getting further away from Josiah. People (other than Milo and I) think of him less often, his name is mentioned less often and I don't get the opportunity to talk about him as much. I know people may think or even say to me that's not true, Josiah will never be far from our hearts. For most it is true. I don't expect him to be on the forefront of everyone else's mind. He was not their son. I am scared of the day when he will be gone from this earth longer that he was here and every month that ticks by is another month closer to that day. It seems impossible to keep his memory alive for a lifetime to come. We try though, especially with our girls.

We miss you sweet baby boy. We will never forget the fear we experienced in those last moments of your life on earth and then the peace God granted us when we knew it was over and you were safely home. Mommy and Daddy love you so much.

- A heart that holds on

The Best Surprise!

2010-03-21T22:49:00.002-03:00

We got the best surprise this morning! Steve and Amy Smith and their boys Emery and Tagg (Josiah's "roomie" for 5 months) showed up at our church this morning. They live 2.5 hours away so it was completely unexpected. Amy made me laugh when she said, "We knew where we would find the Wilson's on Sunday morning." I don't think they could know just how happy it made me to see them!

We had lunch together at our house after church while Tagg took a nap on living room floor. It was a perfect day. They also surprised us with a beautiful gift. Amy's "brother" took a picture of Josiah and made a pencil drawing out of it. He removed all the tubes, tapes, wires and scars from Josiah's body. It's wonderful and certainly something we will cherish! Thank you so much Steve, Amy and Lan for the beautiful picture! And thank you so much for coming to visit!

Josiah's First Picture

2010-03-18T23:35:00.002-03:00

Josiah would have been 10 months old today. We miss him so much. Mommy, Daddy, Daylia and Hazyl love you so much sweet boy. You are loved by so many.

This is Josiah's first picture. It was taken just moments after he was born and we posted it on our blog to announce his arrival. I just realized that we never found the time those first few days to actually write about this picture and the day Josiah was born. I'm not sure if I'm going to get to the day he was born or just talk about the picture. We'll see where this goes. I may have to break it up.

Josiah had to be delivered via c-section due to the complexity of his heart condition. Most babies with Hypoplastic left heart syndrome are okay to be delivered naturally but because Josiah's HLHS was so much more complicated with his intact atrial septum he created quite an emergency the moment he was born. Fortunately, I had some of the best prenatal care and everyone (except us, I realize now) was aware of how sick he was going to be when he was born. So he was taken via c-section at about 7:35am, May 20th. They held him up over the drape so I could see him for one tenth of a second and then placed him in his own crib on the other side of the room. Although, I could not see him because he was surrounded by doctors, he at least was in the same room as me and I was grateful. That's about as far as I'm going to get about the day he was born at this point.

One of the nurses in the operating room took it upon herself to take a picture with her cell phone and bring it over to me so that I could see him. She then texted the picture to Milo, who she knew was waiting anxiously in the hall. I have never been so grateful for a picture in all my life. Milo was able to send the picture to our blog and then because the hospital's television system has internet capabilities we were able to view that picture on the television in my room as we waited for hours to hear news of Josiah's life saving procedure. I remember and will probably never forget, laying in my hospital bed just hours after having given birth to our son, never holding him in my arms or barley even laying eyes on him and looking at that picture on the TV. I just stared at that picture and felt the most authentic feeling of worship I have ever felt. I don't think I have ever felt as close to God as I did in those moments. It's hard for me to explain. I was just so grateful for what God had given us. That's hard to understand because what God gave us was a baby boy who was deathly sick. But what I felt for Josiah was so different than what I felt with my girls. When my girls were born they were immediately placed in my arms and I fed them. I took care of them. I met there needs. But with Josiah it was completely out of my hands. I could do nothing for him. The only thing I had was a picture of him and my faith which tells me that Josiah has a Creator that loves him and is surprised by nothing. Those two things led me to a place of worship and adoration for our Creator. It is so much easier for me to hold on to control of my daughters futures but with Josiah the moment he was taken from my womb I had to release control of my plans for him to God. That left me in awe of God and His love for His people. That moment of worship lasted maybe 30 minutes when the phone rang in our room and the news came that Josiah's procedure wasn't going as well as they hoped. At that point the worry and fear took back over, but I am forever grateful for those moments of calm and peace before the storm.

I saw this picture again a couple of weeks ago when I was looking back at the blog. I had forgotten about this picture. I printed two days ago and put it in a very special frame in our house. It's not the best quality because it is a cell phone picture but it holds so many memories and so much meaning. When I picked it up from the store I sat in my car by myself and pulled the picture out. I was overwhelmed by emotion when I held it in my hand. I began crying and kissed this photo over and over. I look at this photo with a mix of emotions. On one hand it's a beautiful photo because it is Josiah before a single needle stick, before a breathing tube and ventilator and before any scars. But then, on the other hand, I know that if he had been left like that for 10 more minutes he would have died. He looked beautiful on the outside but he was broken and sick and dying even at the moment of his birth. All the while he is our son and he is beautiful and we love him so much and we would do anything to save him.

I can't help but draw a line from that to our relationship with our Heavenly Father. Because of sin we are spiritually broken and sick and dying and yet our Father sees us as beautiful and He loves us and He would do anything to save us. And He did through His son, Jesus. I don't claim to know why God created Josiah so physically broken and most likely I will never know but I am at peace knowing how much God loves Josiah, me, Milo, Daylia, Hazyl and all of his people. When you know that love the "whys?" fade away.

Having the girls hearts checked

2010-03-18T15:55:00.005-03:00

Wow, it's been a while since I have sat down to write a post. I find myself busy and without much to say these days. When Josiah was alive we were extremely busy but I always found time to blog while sitting beside his bed watching him sleep. Now the downtime I have from the girls seems to get filled with many other things.

I've been feeling very nervous since Josiah's death about my girls and their hearts. There is no way to know for sure if HLHS is hereditary or not, but there is a history of Congenital Heart Disease in our family. We also know that if we were to get pregnant at some point again the doctors would want us to have a fetal echocardiogram done to check on the baby's heart. We also know that there are times when CHD can go undetected. Putting all those things together has caused me to worry and be anxious about the state of my girls hearts. So I contacted one of the pediatric cardiologist in this area (who happens to be a friend of ours) and asked him if there was any logical reason for me to be worried. He is a wonderful man and a wonderful doctor who talked us through why we were worried and told us he would be happy to have the girls come in and get checked out. He told us that the "science of medicine" says there is no reason to have them checked but sometimes there is a reason to practice the "art of medicine" and he felt like this was one of those times.

So on Monday we took the girls to have a complete exam done by the pediatric cardiologist. They started with Hazyl and took blood pressures in all 4 of her extremities and then put a pulse ox on her to check her oxygen saturations. Her O2 sats read 93% and that's what the nurse wrote down. Acceptable O2 sat range is 96-100%. Milo and I looked at each other and I think I said, "are you kidding me." We both just stared at each other thinking "here we go again." While 93% isn't terrible and we certainly would have jumped for joy if Josiah's sats ever got to be 93% , it isn't normal for a healthy 2 year old. I started having visions of being back in the PCICU but this time with Hazyl. I just couldn't believe her sats were 93%. We switched to Daylia whose sats were 100% which made us even more concerned for Hazyl. We moved onto them have an echocardiogram done, which they did wonderful through. Our girls were just awesome! It was incredible to watch a healthy, normal heart function on echo. It was truly a beautiful sight and boy do they have big left ventricles! That's the part of Josiah's heart that didn't form and we have gotten very used to looking at his very abnormal heart on echo. I think the echo tech thought we were a little crazy as we watch the screen and talked about it ourselves, marveling over the 4 ventricles and the amazingly functioning valves. It was great for us to see with our own eyes that there hearts looked great. Now I don't claim to know what everything is on echo but I know enough to be able to see without anyone telling me that there were no holes that shouldn't be there, that blood was flowing in the right direction, that they have big thick aortas and beautifully looking valves. We were still nervous though because even though we didn't see anything major we knew that if there was anything wrong with our girls hearts it wasn't going to be the major things. The things our "professional" eyes couldn't see! After the doctor looked over the echo he came back to speak with us and to tell us that everything looked wonderful. I asked him about Hazyl's O2 sats and he had the nurse come back in and check again. This time they sat right at 100%. She probably was constricting blood flow to her finger the first time by holding her finger tense. We were relieved for sure. Both the girls have slight murmurs that are completely normal and will most likely go away as they grow. We appreciate so much our friend and doctor doing this for us, even if it was to give us a peace of mind.

It was really weird being there though. One year spent walking on of the most intense journeys a heart family walks and we had never stepped foot in that office before. We had to ask for directions and sign in like we were new heart parents, but we weren't new heart parents we are seasoned veterans. It made me really sad to have never made it to that point with Josiah. The point of him being well enough to be seen by a pediatric cardiologist in their office. We got great news at the office, our two girls are not "heart kids", but I felt like I wanted to tell the other families waiting there, "we are one of you, we are a heart family, too." There were flyers around the office promoting the next palmetto hearts function in Greenville, free for your child with a CHD, $5.oo for siblings. Looking at that I thought, we can't go, we don't have a child with a CHD anymore. While I know this organization would love to have us at there function it's weird, you belong, yet you just don't belong anymore. Losing a child makes it really hard to fit in places anymore.

One of our fellow families that spent a long time in the PCICU with us got to home for the first time with their precious baby this week. Atticus was born in October with HLHS and had a very rough time in the beginning but God has seen him through and he is now home with his big sister and brother were he belongs. Praise God. We are so grateful for this families homecoming. We also ask for prayer for Maia, Josiah's PCICU girlfriend. She had to have another unexpected open heart surgery last week and is recovering slowly. Please pray for this sweet baby and her parents. She is beautiful and I know how much her parents want her back home.

Thank you for your prayers.

we always knew hazyl belonged in the circus...

2010-03-13T13:20:00.001-04:00

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where to take mommy on a date...part 2

2010-03-12T11:32:00.001-04:00

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where to take mommy on a date... part 1

2010-03-12T11:30:00.001-04:00

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daylia reviews her 1st dental experience...

2010-03-09T15:05:00.001-04:00

Daylia wants you to know that her favorite part was the goodie bag!

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hazyl reviews her 1st non-emergent dental experience

2010-03-09T15:04:00.001-04:00

hazyl's favorite part of the dentist was brushing her teeth.

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Our Innocent Girls

2010-03-03T15:32:00.004-04:00

We continue to have ups and downs at the Wilson house. It's been tough lately for a lot of reasons. One thing I feel comfortable sharing although I am embarrassed by it is the emotions I have been experiencing with my girls the past couple of days. For some reason they have been really clingy to me lately, hanging on me, whining their favorite phrase, "I neeeed you, Mommy." They were like this a lot in Charleston. I have a hard time with it the past couple of days. I'm frustrated by them needing me so much because what I am missing is being needed by Josiah. I hurts to be needed by them so much and to not be needed by Josiah. It's like I want to tell them, "you're fine, you're a big girl, you can go to the potty by yourself, you can get dressed by yourself, your brother on the other hand, he's the one who needed me." Obviously, I don't say that to them, but it is what I feel, as hard is that is to admit. So I get frustrated and upset with my two precious girls. I know that it's not there fault.

I think I need to make some time away from them occasionally because I think what happens is that being with them constantly keeps me so busy that I don't have the time to grieve the way I need to and so I get angry and upset. I think if I can make the time to get away I can be more present when I am with them. I think both Milo and I need sometime by ourselves and some time together without the girls. So I'm taking a break tomorrow. I'm going to a church leadership conference with Milo. Thank you to my dear friend who is going to watch the girls for us tomorrow. I'm hoping some time away from the girls will give me a chance to reflect and recharge and I'll be better for it and for them when I get back.

Our girls are beautiful and they bring us so much joy. I am so grateful for them, their health and their joyful spirit. I never imagined myself getting so frustrated with them and I feel so guilty for it but I love them to much to continue feeling this way so I'm going to try some new things hoping to get back on track.

Here are some beautiful pictures I took of the girls yesterday in the backyard. We had the most beautiful snow yesterday. In an attempt to keep reminding the girls (Hazyl especially) where Josiah lives now I told them that I thought Josiah knew how much his sister's loved snow. So maybe he asked God if He would make it snow for his sisters and God said, "sure!"

Bibles are good for you! an original song by Daylia

2010-03-02T18:59:00.001-04:00

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The last pictures we have

2010-02-24T15:19:00.004-04:00

I'm missing our sweet boy lot's today. Looking through photos with the girls today I realized these were the last pictures I have of Josiah. They were taken on January 20th. The day he turned 8 months old and just 4 short days before he passed. This was the second time we had gotten him down on the floor to "workout." It was so much fun to have him on the floor with us. I remember after his "workout" Milo sat with Josiah in his lap on the floor for a couple hours until his behind hurt so much he couldn't stand it any longer. So I traded with him and Josiah and I played on the floor until shift change. I remember that evening when the doctors rounded all being so excited to see us on the floor together. Josiah, Mommy and Daddy all had a great day!

We miss you, Josiah!

-A Heart that Holds On

Deciding what to do with Josiah's things

2010-02-22T15:25:00.002-04:00

In thinking about what things to keep of Josiah's I realize that the main thing that I have an attachment to are his blankets. His life of living in a hospital bed didn't offer himself to many opportunities. He was only ever in a car seat 4 times. He went on 2 walks and saw the sunshine 3 times (2 of which were in transport from hospital to home and back). Josiah rarely wore clothes because they always made him spike a temp. What he had were the blankets he laid on and cuddled with. Everyday after bath we picked out and changed the blankets he laid on. Somedays we had to change them several times a day! I remember about 2 months into our stay in the PCICU some of Josiah's blankets got thrown into the hospital laundry instead of mine and therefore were lost for good. This really upset me and I didn't understand why, they were just blankets. I could easily get more. Then it hit me that Josiah's blankets were really all he had and one of the practical ways I was his mommy. I could take them home with me and do his laundry.

I would like to take Josiah's blankets many of which are just receiving blankets and maybe a couple of shirts he wore and make a quilt out them. The problem is I don't know how to sew! I would like to have several quilts made out of his things. One for Milo and I and then one for both of the girls. In my head the girls will be taking these blankets with them to college (I've learned though that things don't always look the same in real life as they do in my head)!

So my question is… is there anyone out there that would be willing to sew some quilts for me! I'm not 100% sure I'm ready to do this yet, but it is what I want to do with his things because I can't keep ALL of his blankets folded up in my closet forever or for that matter on the couch in his bedroom. Baby steps, right?

taking daylia and hazyl to target

2010-02-18T21:02:00.001-04:00

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Why I miss the PCICU

2010-02-17T22:52:00.004-04:00

I spoke with Josiah’s nurse, Mindy, (I guess I just need to start calling her my friend, Mindy) yesterday. We talked for a while and I began telling her how much I missed the PCICU. Part of losing Josiah is losing this whole new life we had. After about 4 months in the PCICU Milo affectionately gave me the nickname, “the mayor.” When Milo would get back from being in Greenville for several days he would get the biggest kick out of how many new families I had met since he had left. So he started telling me that I was the mayor of the PCICU and he would comment on how happy I was being the mayor. He was right. I loved talking with other families, being a help when I could, praying for families, or just being someone that would listen.

See, I loved life in the PCICU, besides all that stuff about your child being sick and missing the girls and only seeing Milo half the week. All things considering though, having to be there for 8 months, I was happy there. I thrived there. I’m just figuring out now why I think that was. For the past year I have had a very focused purpose for my life. For the past year I have had to do all I could to care for my precious “heart” baby which also turned into caring for other “heart” families. I’ve spent a year reading and researching everything I could on HLHS and congenital heart disease. My two semesters of college biology has carried me a long way in being able to read and understand medical journals. I have read and researched everything from the normal HLHS to the very tricky idiosyncrasies of Josiah’s case. I have researched the connection between HLHS and ADHD along with other learning disabilities. I have researched physical therapy methods for vent dependent children. For 10 days after Josiah passed away I couldn’t bring myself to close some of the pages I had open on my google search engine. The night before Josiah died I was at home in Greer and I was doing what I always did, research. I had two different searches open. One was “prognosis of pediatric heart-lung transplant” and the other was “bosentan vs. sedenifiel therapy for pulmonary hypertension.” I had a purpose. I was not only reading to find out everything I could about Josiah but I was constantly looking for the newest treatments for many of Josiah’s issues. I was going to push the doctors to think of a new way of treating Josiah. Josiah’s condition was rare and a lot of his symptoms were unique so there was no "by the book" way of treating him. Most the the time when I would bring something up that I had researched on my own the doctors would say, “yeah, we’ve thought about that and this is why it won’t work.” I knew my place. I am a mom not a physician, but I do believe that my pushing and questioning caused them to think harder on Josiah’s behalf, because occasionally there was, “sure we can try that” or “no, not that but maybe this.” I wanted so badly for our story to be one where the parents, as advocates for their child, push so hard and found a way to heal their son. You know the kind of story that they make movies out of! But that was not the plan.

The other part of my purpose for at least the last 8 months has been in helping other parents going through similar situations. I love the PCICU waiting room. I remember my sophomore year in college when sitting in an ethics class discussing God’s greatest creation, His people, and how all people were created in his image, that I realized everyone I knew looked just like me. I remember talking about how God created all His people in His own image and as I looked around the room at my classmates I realized I was missing out on so much of who God is by only experiencing people just like me. I have only really been in community with middle class white people. But the PCICU waiting room is different. It does not discriminate. I would sit in the waiting room with hispanic families, african american families, wealthy people, poor people, single moms, families going through divorce, well educated or uneducated people. It didn't matter. We were all so different but we all had one thing in common. Congenital heart defects don’t discriminate. To me there was something beautiful about that waiting room. Something we can’t seem to create in our churches or in our neighborhoods and I loved it. I now miss it. I'll never forget one of the families I met in the waiting room. I struck up the usual introductory conversation with them. "Do you have a little boy or little girl in there?" "Is he doing okay?" "Are you guys okay?" That conversation continued for a while. I was surprised by their medical knowledge for being "new" to the PCICU. I finally asked if they were medical professionals and that's when they told me that they were both adult cardiologists! Oh boy did I feel dumb offering my advice! But I quickly realized that they were in the same position as us, just scared parents looking for someone in a similar situation. They were the nicest couple. I was able to help the mom out with questions about pumping and just be an encouragement that things would get easier. Again, it never mattered who or what you were outside the PCICU because on the inside we were all the same, moms and dads fighting for our child's life. Milo and I had the ability to minster there in a way we have never been able to before. Not that we were out looking for people to "get saved" in there time of pain. That's not who Milo and I are. But it was an awesome place to be able to share the hope that we have in Jesus Christ. Most the time not with precise words but through our actions and attitudes as we faced the same struggles. And then on the other hand we were ministered to so incredibly by just being around such a diverse group of people. I miss being with all those people, being helpful when I could or just being an ear. I had purpose there just being a smiling face and hopeful spirit in the midst of pain.

It is very painful for me to think there is no reason to go back to the PCICU. We knew that while Josiah was alive the PCICU would be a second home for us and we were okay with that. Obviously hoping that our time spent there would gradually get less and less as Josiah got older. Now we just walk away with no reason to go back. So again with the questions of what now. What is my "new" purpose? Where do I go from here? Time will tell.

Rudy's Heart

2010-02-09T15:54:00.004-04:00

I wanted to re-post a blog from a friend of ours. This is a family we have gotten to know through the blog world from across the country. Rolf and Trish have an amazing little boy named Rudy with HLHS. I found their blog right before Josiah got his trach. I was looking for any babies with HLHS and trach and found them. Amazingly, Rudy and Josiah have a lot in common. They have struggled with many of the same issues on this journey. Rolf and Trish have been such an encouragement to us. Trish just unveiled on her blog a heart pendant that she created in honor of Rudy's heart condition. This week is Congenital Heart Disease awareness week. Trish is selling these heart pendants and giving all the proceeds to a camp for children with congenital heart disease. I'm not much of a jewelry wearer but I have been looking for something to wear as a reminder of Josiah. I bought one from Trish the moment I saw her post. I thought I would re-post her post here if anyone was interested. The pendant is called "Rudy's Heart- half a heart, overflowing with love."

Rudy’s Heart

February 6, 2010 by Trish

You might not be aware that this coming week is Congenital Heart Defects Awareness Week, so here’s one way you could commemorate it. You might also want to give your Valentine a subtle nudge…

: Vist www.silverbytrish.com to purchase!

One of the benefits of being home with Rudy these past 9 months is the chance I’ve had to s-l-o-w-l-y reacquaint myself with my shop after a year-long hiatus. I’ve always enjoyed the creative process of my jewelry making and silversmithing but, as with everything, it has taken on even greater meaning for me since having Rudy home.

Shortly after Rudy’s diagnosis, I was inspired to make a special pendant that represents Rudy’s half (but still beautiful) heart…a perfect companion to the “Mama’s Heart” design I was already offering on my website. I’m finally ready to unveil “Rudy’s Heart” and I wanted our Rudy’s Beat friends to be the first to see it! I’m making them available for purchase on my website www.silverbytrish.com with our profit on each sale going to Camp del Corazon…a wonderful organization that provides rich camp experiences for children living with heart disease. Rudy will be eligible to go the summer of 2015!! Check out their site when you have a minutewww.campdelcorazon.org. It’s an organization we feel drawn to support not only because of the people for whom it exists but also because of the people who are involved…many of Rudy’s CT doctors and nurses volunteer their time to be counselors at the camp each year so the children are not only assured a FUN time but also a SAFE one as fully-equipped infirmaries are set up at camp to care for the kids’ special health needs.

HLHS may define a big part of who Rudy is and how it affects our son may be completely out of our control but there is something empowering about the process of creating (literally forming with my hands) our own symbol of HLHS and using it to help bring a little joy into the lives of kids like Rudy. As the character Flint Lockwood says in Cloudy with a Chance of Meatballs…”We’ve got diem to carpe!” And seize it we will…

You can can check out Rudy's Blog here.

Running

2010-02-09T11:00:00.002-04:00

I went running last night! Thanks for the invite Shelly. I had fun, well besides the constant cramp in my side and breathing in so much cold air that my lungs hurt! It's gonna take a while to get back in shape, but it was nice to be out.

Where is my faith now?

2010-02-05T23:45:00.002-04:00

Well, I'm writing this in an attempt to be transparent about where I am right now. I don't need anyone to think that I am someone whose got my faith all figured out when I know in my heart that it is all very complicated. I haven't really talked to God much since Josiah's death. I've thanked Him for the way it happened and thanked Him that Josiah is now healed but I'm pretty scared to ask him any questions right now. The Sunday before Josiah died Milo and I started a fast. We were fasting and praying partly because our church was doing it and partly because we felt led to on our own. Before I knew that Tommy (our pastor at Ridgeview) was asking our church to participate in a church wide fast, I spoke with Milo about the idea of us fasting and praying for Josiah and areas in our lives that we were feeling like we needed clarity. So we were in the middle of a fast where we were asking God for guidance. We were wondering if it was time to move to Charleston or if we needed to look for a medical center that would consider a heart-lung transplant. These were some huge decisions we were trying to make and certainly didn't want to make them within our own strength. We wanted to be very sure that we had a clear answer from God. So one week into our fast Milo and I felt like we were getting closer to God, we both felt like we were hearing from God but didn't feel like we had any clear answers to our questions yet. And then Sunday happened, oh Sunday happened. Now what? Obviously our questions about Josiah and his care have been answered and there doesn't appear to be any logical reason to move to Charleston anymore. But now what (seems to be a continued question right now)? I don't even know where to begin talking to God right now. People will say, "God will always answer your prayers, it may not be on your timeline and it may not be the answer you want, but God will answer prayers" I don't feel like we begged God for an answer to our struggles with Josiah and this was the way He chose to answer our prayers, as much as I feel like us committing to fasting and praying was God's way of preparing our hearts and drawing us closer to Him for what He knew was coming. I just don't even know what to say to God right now. For over a year now Josiah has been the constant focus of my conversations with God and now that's not there anymore. I even asked Milo the other day if there was any point in me praying for Josiah anymore. He doesn't need anything anymore, he is perfect, but for so long prayer was one of the very few things I could do for my son. It is very difficult for me to not have that anymore or to hear others say they are praying for us now (not Josiah). I know I can talk to God about Josiah, but what do I say, "take good care of him." Of course God is taking good care of him. "I hope he's happy." Of course he's happy. "I miss Josiah." I guess that's what I tell God.

I'm afraid of asking God, "Now what?" because I'm not sure I'm ready for the answer yet. As much as I want an answer to that question I'm still stuck not feeling like I don't want to move on. Oh it's so confusing!

The thing I do know is that the week before Josiah died as we were fasting and praying, God led me to read the Old Testament book of Job. Job is the story of a man who loved God deeply and yet had everything taken from him, his family, his possessions, his wealth. Through this Job questioned God and felt uncertain , he was grieving and he was angry, he went through a whole range of emotions. He never lost his relationship with God but he questioned it. This book shows me that questions are okay, there doesn't always have to be easy answers. God is big enough to handle all our questions, fears and doubts. The beauty is I don't have to pretend that I don't have them.

This is how one theologian explains another aspect of the book of Job

" The problem ... is simply the question of how a righteous God can allow innocent people to suffer. At one level Job addresses this question by the fact that he innocently suffers. However, the book of Job does not answer the "why?" of innocent suffering. It only affirms that when one really meets God such questions fade into the background."

I am grateful that I have met God and that the statement above is true. "Why?" has faded into the background. I am grateful for my personal relationship with Christ and that I can talk to Him just like I can with my best friend. And if I don't feel like talking right now He's still there just to comfort me right now.

-A Heart that Holds On

Random thoughts

2010-02-04T22:47:00.005-04:00

It been really difficult to blog because it has been really difficult to organize my thoughts lately. My thoughts and emotions are all over the place. This post may end up being scattered so please forgive me. We have received so many cards, emails, and facebook posts over the past week. We are so grateful for the outpouring of support we have received. One of the more common things that people have said to us is that they are thankful that we have shared our story through this blog. The thing is I'm so grateful that people have followed our story because it makes this so much easier. I feel like because of our blog many people know Josiah and love Josiah. I can't imagine going through this pain of losing a child and feeling like no one knew him. While no one knows him like we do it is easier knowing that so many others loved and prayed for him as well. It certainly makes us not feel so alone.

One of the things I've been feeling as we transition back to life here in Greer is that I have missed so much. I honestly feel like I have awoken from an 8 month long coma. Life moved on here while ours stood still for so long. It's been hard to realize the many things I've missed since last May. The inside jokes that friends have that I'm not on the inside of anymore, the issues that others are going through that I had no idea had happened, the knew faces at our church that I've never met yet they send there condolences. It's a strange feeling.

In the last post that Milo wrote he said, "what now, what do we do now?" That is the question looming over us. What now? As a friend mentioned to me earlier today, before Josiah we were this "perfect" little family. My husband had a great job, I had a wonderful part-time, work from home job, two beautiful girls. Everyone was healthy and happy, life was easy and good. Then we got thrust into upheaval with Josiah. We've spent the last year loving a little boy who we never knew how long we would have. We spent the time living 4 hours apart struggling to keep life normal for our girls. We entered this world of the medically fragile child and ICU's. It's such a different world and one we grew to love along with the people that came with it. Now we don't have any of that anymore and we don't know what to do. While it's been a very difficult year we miss it terribly and we don't want to go back to that "perfect" little family of 4 we used to be. We are not a family of 4, we are a family of 5, just not the "normal" family of 5 and we don't know what that looks like. We really don't want to just fall back into the live we used to have. How do we keep that from happening? What changes in our lives? I don't know.

I feel guilty doing things that I wouldn't be doing if Josiah were alive. I'm a pretty with it person and I know in my head that there is nothing wrong with having fun and living life where we are at but I still feel guilty. I have had 4 different offers from 4 different people to join them in a race in March. I know that all these people think, "Erin loved running before Josiah and hasn't been able to get back to running since he was born, so I bet she'd love running again." While that is a very logical thought and probably on of the most healthy things I could do at this point, it makes me feel guilty or maybe sad because if Josiah were home with us there would be no time for running. At this point I'd rather there be no time for running. There is also another emotional hang up with running that I don't think I want to get into right now. I really do want to start running again and I'm hoping to do at least one race in March. I just think it's going to be a slow start.

So those are just some of the thoughts going around in my head and around our house. Sorry for the jumbled thoughts but that seems to be the only way the come. Poor Milo! I will continue to say that I know Josiah is better off now, he is healthy and whole and has no more pain in his future. That's really what gets me through the days. But I am still his mommy and I miss him greatly. I still want another day with him, more time to hold him. I want to be the one taking care of him and making him smile.

- A heart that holds on

Heaven

2010-02-03T00:06:00.005-04:00

This is a post I wrote back on May 1, 2009. I never published it because I was afraid that people who read it would think I was being too negative or didn't have enough faith that God could heal Josiah. It was hard to admit, at that point, to the negative thoughts in my head.

Our three year old is beginning to understand the faith that her mommy and daddy have. She loves to go to church, she loves her little Bible and loves to read it while mommy and daddy ready theirs. I think she's beginning to understand that God made her and that God loves her. She's beginning to know that God wants her to be kind and loving to all people and that God wants to be her friend. She's beginning to know these things because that's where Milo and I feel is a good place to start. So those are the things we've been trying to teach her.

One thing she has no clue about it the concept of heaven. While other kids in her class at church can tell you that Jesus died and went to heaven and that he wants others to be there with him when they die, Daylia thinks that Jesus built a special place for her called Africa. It's just not a concept that I feel a 3 year old is capable of understanding. I don't think I even grasp it sometimes. So we haven't tried to teach her about heaven because if you go there you have to teach about death and dying. Until she experiences death she won't understand it. Who knows when that will happen. It could come in the form of a pet or animal or a great-grandparent, I don't know. But I don't see the point in talking with her about it until she's experienced it. Just like there was no point in me telling her about the ocean before I ever took her there. She just wouldn't get it.

I'm really praying that I don't have to teach my three year old about heaven anytime soon. I really am not ready to do that. I'm praying her first experience with death isn't her brother.

Daylia and Hazyl have done well with the news of Josiah's death. I'm not sure how much they really understand. It's difficult for them to grasp because Josiah was not with them everyday. The last time they saw him was New Year's day, so they are used to not seeing him. I really don't think Hazyl understands yet. She says things like, "this shirt doesn't fit my anymore, mommy. Josiah is a baby he can wear it." She talks about him a lot, which makes me very happy. While returning a double stroller that a friend had let us borrow for Josiah, I had to tell her again today that Josiah died and that he was now in heaven and that was the reason he didn't need the stroller anymore.

Daylia understands a little more. That may be even harder for us. Milo has a song he has made up, spelling all of our kids names. He was singing it to Daylia today, when she told him that he didn't need to spell Josiah's name anymore because he died. Milo reinforced with her that, yes, Josiah died, but that we could still sing about him. That he was still a part of our family, that he would always be her brother and that we were always going to talk about him. He talked with her about how she could always tell people that she has a sister and a brother, but that her brother is in heaven. We want so desperately for her to know that Josiah is still a part of our family and that it's okay to talk or sing about him.

One of my biggest fears through this whole process has been the thoughts of teaching my girls about death and heaven. We are living that fear now and realizing that it's going to be a long process.

Sledding!

2010-02-03T00:06:00.003-04:00

After enjoying a few days at my parents lake house we came back home and were excited to see there was still some snow in our backyard. The girls were so excited. You'd think there were 3 feet of snow! We spent the morning "sledding" in our backyard, unfortunately we don't own sleds. Here are some clips of our fun!

Now What? Monday Jan 25th, 2010

2010-02-02T01:50:00.005-04:00

I woke up Monday morning instantly remembering the awful truth. Josiah was gone. I rolled over to check on Erin, who was thankfully sleeping. We had gone to bed at 8:30 the night before, but I had not intended to sleep the night through. Erin was really not doing well, and I thought I would lay with her until she fell asleep, then get up and get something to eat. However, here it was: morning. We hadn't eaten anything at all the day before, and we had spent much of the day driving, crying, and throwing up. I must have collapsed the minute my head hit the pillow. Erin had not slept as well as I had, she had been awake for many of the hours I had slept, but for the moment she was asleep. Good.

So here we were. Now what?

We finally roused ourselves out of bed, and began the process of moving forward. First there was breakfast: a few pieces of toast and some orange juice. Then, we began packing up the house we had lived in for much of our time in Charleston. Erin's parents were there with us, and what an incredible help they have been to us this year. We had packed up the house many other times together, but this time, it was final. We wouldn't be coming back for Josiah's additional heart surgeries or cath procedures. This was it. We slowly and methodically packed the vehicles with relative ease, for we had been doing it over and over for months now. By 11am we were ready to go.

I made the call to the hospital morgue to make arrangements with the local funeral home that would be assuming the care of Josiah's remains. We made the decision to have Josiah cremated, because we didn't feel right about burying him in any specific city or cemetery. Why? His whole life had been spent in Charleston, our family roots are near Buffalo, and our home is now in Greenville. How could we decide? Besides, we believe that like all humankind his body was made of dust, and once his soul went to heaven his body was of no use to him anymore. It was not a fun phone call, but I have to admit it wasn't as bad as what I expected it to be.

The same could be said about this entire day. It wasn't as bad as we thought it would be. I know that sounds crazy, because we had just lost our precious little boy, but God had already begun to wrap his arms tightly around us, encouraging us to celebrate Josiah's life rather than mourn his death. So we did. We chose to celebrate him.

I will never forget the feeling that come over Erin and I as we walked through the doors of a CVS that morning. We were both overwhelmed with the realization that no one knew what we were going through. I mean no one could have known. We were just a young couple looking through thank you cards. It is doubtful anyone would have guessed we had any children at all, because they weren't with us. Certainly, no one would have thought that we had said goodbye forever to our youngest of three kids less than 18 hours before, after a gruelling 8 month struggle that had his life. They could not have known. And neither will we in the future. I hope to never forget that realization, the one that leaves me knowing that the person standing next to me in the checkout line might be enduring the most difficult day in their entire life. I hope to treat people different because of it.

We chose to celebrate Josiah's life that morning, and plan to do so again every morning from then on. That morning we bought 249 chocolate hearts, and a funny thank you card and headed straight back to the PCICU unit where we had gone nearly every morning for those 249 wonderful days. Typically, I always responded to "PCICU, how can I help you?" on the intercom by saying: "Josiah Wilson please." I remember asking Erin when I buzzed in, "what should I say?" She told me: "Just stand here, they will let us in." And they did.

We spent a few moments with some of Josiah's nurses, then headed out for Greenville. After a stop at the funeral home to sign some paperwork, we merged back on to the familiar road that brought me to and from Josiah each week. There was nothing else for us here, and we wanted to get home to see our girls. I never turned on the stereo during that 3.5 hr trip, which is out of the norm for me. But, there wasn't anything that seemed normal anymore anyway, so what's the difference? Erin and I talked about Josiah the whole trip home, and talked through discussing his passing with our two precious girls. After some help from a professional counselor and friend, we decided to tell the girls that Josiah had died. We need to use the word "death." We needed to be concrete with them. We couldn't say that he had "gone away to live with Jesus," because the next time Erin and I left them for a long weekend, our girls might be worried that we would never come back. This would be a difficult talk.

We went immediately home, and asked our friend Eve to bring them to us right away, and she did. Within minutes of us arriving, we heard a second vehicle pull into the driveway. After Eve left, we brought the girls into the living room and broke the news to them. Sometimes it is refreshing to see things through the eyes of a child. Daylia said, "Oh, Mommy that makes me a little sad, I didn't even get to see him be a little kid." That was exactly what we were thinking. Then, almost immediately Hazyl began pointing out pictures around the house with Josiah in them. "There's Josiah, and Me, and Mommy, and Sister, and Daddy!" This was a nice moment together. But then the best part came about 1 minute, 30 seconds later: "I love Josiah, Mommy and Daddy loves Josiah, Sister loves Josiah, Jesus loves Josiah. Can we go play now?" We hugged them tightly, then played a new board game with them that they were given for Christmas. It was a beautiful finish to a long day.

Now what?
We celebrate Josiah's life more, we love more passionately, and relish each moment with more intensity. Or at least that is what we want to do.

Sunday, January 24th

2010-01-31T22:28:00.000-04:00

On Saturday afternoon, January 23rd, I made a spur of the moment decision to take the girls home for the weekend so that we could be with Milo. I just felt like I didn't want to be away from him for the weekend and Josiah was fine, my parents were in Charleston so they could be at the hospital with Josiah. We had a fun evening together with friends on Saturday night and then got up in the morning and headed out for church. I spoke with Josiah's nurse right before the service started and she said he was doing great. He had slept through the night and he had no fever. It was really nice to worship with my husband. As the church was packing up after the service (we meet in an elementary school) I got a phone call from the hospital. I ran outside because my phone doesn't work well inside the school. I answered the phone and a nurse said to me, "Erin, Josiah is not doing well right now, he has coded and we are doing CPR on him now." I called out for someone to go get Milo. Then the nurse said to me, "Erin, you need to get here quick." That's when my heart started breaking and I had to tell her that I wasn't in Charleston but 4 hours away in Greer. I fell to the pavement and onto my knees and Milo came running. I was begging the nurse to stay on the phone with me but she said she was going to be more useful helping out than on the phone. I knew that was true, but I still did not want her to hang up. Milo and I held each other on the ground and begged God to bring Josiah back, not to take him this way, when we were so far away. I called the PCICU back after several minutes and this time spoke with Dr. Graham. He told me that they had been working on Josiah for about 30 minutes and he didn't think there was much hope. I begged him not to give up and he said he would do everything he could, then hung up. Milo and I got up off the ground and got some friends to take our girls home so that we could take off for Charleston. I think as we began driving we both knew that it was over, that Josiah was gone. I waited about 20 minutes before I called back and once again spoke with Dr. Graham. He so genuinely told me that he was very sorry but that they were unable to get Josiah back. It goes without saying but that was the most devastating news we could ever receive. Josiah was gone and we were not with him.

I don't think I even know how to describe my feelings at this point. They were feelings of incredible pain but there was a peace at the same time. Milo and I cried and drove and made phone calls and talked and cried and drove.

My mom held Josiah in her arms until we got there. At 4 o'clock Sunday afternoon I took my son into my arms for the first time with no tubes, wires or monitors. I held him for several hours while we said good-bye and as nurses and doctors came into say good-bye. We spoke with Dr. Graham who told us exactly what had happened. He told us that at one point they got Josiah's heart started again and thought they were over it. They were just about to call us and let us know he was doing better when his heart stopped again. Everything happened so fast with no warning signs. They gave him all the drugs they could possibly have given him and his heart would just not come back. Dr. Graham said that the only thing that he thinks could have caused this was that his BT shunt clotted off and did not allow blood to flow to his lungs. Josiah's BT shunt was a gortex tube that was placed during his first open heart surgery when he was 13 days old and it was the only way that blood flowed from his heart to his lungs. It is usually removed when children have their Glenn surgery because a new, more effective pathway is created at that point. That is the surgery that we had found out a week prior that Josiah couldn't have. This shunt clotting off has always been a risk. When it clotted off there was no blood flow to his lungs, which means no oxygenated blood to his body. Because of Josiah's low oxygen saturations to begin with he has a very low reserve and his heart immediately became over stressed. Dr. Graham said that a BT shunt clotting off is one of the very few things that can happen that they can't do anything about. The only way to fix it would be to take him to surgery or the cath lab to break up the clot, but obviously you can't do that while Josiah is coding.

Milo and I were very confident that day, as we are today, that the doctors and nurses did everything they could possibly do. Josiah received the best care he could and for that we are eternally grateful. We thank God that this happened while Josiah was in the PCICU because we don't have the "what if's" or the guilt of not being in the right place. This would have happened to us at home if we had been home. Even Dr. Graham said to us that he was now grateful for Josiah's fevers, which we were all so annoyed by, because it was the only reason he was keeping us in the PCICU. If this had happened at home there would be so many questions and so much guilt.

While, I'm not sure I'm grateful I wasn't there when Josiah passed I am very grateful Milo and I were together. This was only the 3rd Sunday in 6 months that Milo and I were together. I couldn't imagine this happening with Milo in Greer and me in Charleston.

At 7:30pm, Sunday, January 24th, Milo and I gave our sweet Josiah our final kisses and said our final good-byes. I couldn't walk out of that unit with out Milo holding me up. Again, no words to really describe what we were feeling at that point.

This post has taken me about 4 days to get through. I have so many other things that I want to write about but it's hard, the pain is real. I do believe that it's therapeutic for me to write, it's just more difficult than before. I want to keep blogging so please bear with me as I figure out how to do that now. I don't even know what to label my post any more.

-A heart that holds on

Josiah's Tribute Video

2010-01-30T18:21:00.003-04:00

We wanted to share the video we made to celebrate Josiah's life. We showed this at his memorial service on Thursday evening. We are certainly missing our sweet boy.

Dear Josiah

2010-01-29T11:26:00.001-04:00

Dear Josiah,

The day you were born, your mommy and daddy were so scared. We were scared that we were never going to have the opportunity to see our precious boy none the less hold you. But the moment you were born our fears turned to joy. Mommy got to hear you cry, little did I know that would be the only time I would ever hear your precious voice. Your poor Daddy had to wait in the hall outside the OR because the doctors would not let him in, but he got to see you first, as an entire team of doctors wheeled you by on the way to the PCICU. We waited for hours and hours to hear if your first, of what would be many, invasive heart procedures was effective and we could have you for another day. When the word finally came that the doctors had success and you were stable, mommy and daddy were overjoyed. We remember the feeling so clearly it was a moment of the most real and authentic worship we had ever known. We were just both so aware at that moment that God, your Creator, had granted us another moment with you and we were so grateful. Those first few days were so scary. We were thrust into a world we had never known existed and it was so overwhelming. But the amazing doctors and nurses in the PCICU were incredibly caring and spent so much time with us teaching us about this whole new world. We learned a new language, a new culture, and a whole new way to live, where you make each moment count because you are not guaranteed your next.

When you were 13 days old you underwent your first open heart surgery. The night before, your surgeon told us that we could delay your surgery if we weren’t prepared to lose you. We told him that we would never be prepared. We were once again so scared, we cried and cried over you. We had to step away from you for a moment and take some time to eat. As your daddy and I sat on a bench outside the hospital we prayed and begged God to protect you. God gave us a sign at that point in the most unlikely of ways. In the bottom of our fast food bag was the most perfect, heart shaped jalapeno popper! Mommy and daddy laughed so hard, we were stunned and truly believe that God gave us an incredibly silly sign just so we would laugh and be at ease. It worked! Because of your surgery the next day the staff let us hold you for the very first time that night.

God saw you through that surgery. You did so well and began amazing the doctors with your strength. Those first couple of weeks turned into a month and it was then after several attempts at breathing on your own that we began to realize just how damaged your lungs were and we settled in for the long haul in the PCICU. One month turned into two months which turned into four and on and on. You had some really great days and some really really bad days and the roller coaster ride continued. It continued for 8 wonderful months until this past Sunday when you were so unexpectedly taken from us. Our hearts are breaking because we miss you so much but Daddy and I have said over and over that we were never guaranteed day one with you and yet we got 249 days with you. 249 days worth of love and memories that we will cherish forever.

You have taught us so much in your all too brief life on this earth. The constant theme through all you have taught us is love. You taught us how to love you even though we never got to hear your voice or feed you a bottle . You taught us how to love your sisters more deeply and never take a moment with them for granted. You taught us how to love each other through pain and suffering. You taught us how to love other people exactly where they’re at, if they are broken and hurting or if they are rejoicing because of victory. You taught us to see the beauty in each moment. We will never forget the first time we saw you smile 10 minutes before doctors wheeled you off for your second open heart surgery. It was like you saved it specifically for that moment to let us know you were going to be okay. We will never forget the day you got your trach, when you were 5 months old, and for the first time in your life mommy and daddy got to see your beautiful face, free from tubes. It brought us to our knees as we thanked God for the most precious cheeks that we could now kiss. We will never forget the 3 days we had you at home and we were a complete family of 5. We had begged God for that opportunity and although it was the craziest 3 days your mommy and daddy have ever experienced, we will cherish those moments forever.

We miss you terribly but we are at peace knowing that you are now free from the tubes and the monitors, the medications and the surgeries. You are now whole with Jesus and are experiencing life to the fullest. Your heart is perfect and your lungs are pristine. We rejoice that we will one day see you again and that we will finally hear your voice calling us, Mommy and Daddy.

You are our precious, sweet, angel boy. You are our son and we love you all the way to heaven - and back.

- Mommy and Daddy

In Honor of Josiah

2010-01-26T13:16:00.005-04:00

We are so grateful for the outpouring of love we have been experiencing these past few days. We have has so many generous offers and we are so overwhelmed. To honor our precious son we would ask that you make any contributions to one of the following organizations that are close to our heart.

Crossbridge Family Ministries

This is the organization that has selflessly served us and many other families in similar situations as us. They have provided us housing, food, counseling, childcare and a world of support. This is a local organization in Charleston, SC.

MUSC Children's Hospital- Pediatric Cardiology

Please make sure to designate on this page that you would like your donation to go to Pediatric Cardiology. You can also send the donation in honor of Josiah Wilson.

World Vision- Haiti Relief

Our hearts have broken over the devastation of Haiti. We believe that Josiah would be greatly honored to know that people gave to this cause in support of a nation of children that are hurting.

Please consider supporting one of these causes in honor of Josiah. It warms our hearts to know so many people care for us and are looking for a way to honor the life of our son.

Josiah's Memorial Service

2010-01-26T00:48:00.007-04:00

We will be having a memorial service for our precious baby on Thursday, January 28th at 6:30pm. The service will be held at Edwards Road Baptist Church.

Edwards Road Baptist Church
1050 Edwards Road
Greenville, SC 29615

For those who will be traveling from Charleston be advised that 385 Northbound is closed due to construction and you will have to continue on I-26 until you reach I-85 in Spartanburg. This will add an additional 30 minutes to your drive, however returning home you will be able to take 385 southbound. Please look carefully at a map to plan your trip.

We will be celebrating the life our son, Josiah, through this service and would love to celebrate with all who have been touched by Josiah's life. For those who have asked about and our interested in sending flowers or gifts please respect our wishes and do not send those. We will be setting up a fund in the next 24 hours to honor Josiah through a few organizations that are near to our hearts. Thank you so much.

In the arms of Jesus

2010-01-25T16:02:00.002-04:00

It is with great sadness and yet peace that comes from Christ that we write this post. Our sweet baby boy passed from this earth and into eterinty yesterday afternoon. It was sudden and quick our precious Josiah did not suffer. For that we are eternally grateful. The amazing team in the PCICU fought heroically for Josiah, but it was his time. We are so grateful for their efforts but know that Josiah is in a better place now. We love him and will always long to be with him.

Arrangents for a celbration service will be posted here when we have them finalized. Thank you as always for your continued prayers and support.

The Wilson family- Hearts that hold on

New Medications

2010-01-22T23:23:00.002-04:00

Josiah had a pretty decent day today with temperature sitting around 100- 100.8, funny that we feel pretty happy about a temp like that. His O2 sats were good all day. We came back to the hospital tonight and found out that his temperature, unfortunately, spiked to 103. Bummer! Also, his nurse pulled back on his G-tube to see what was in his tummy (one of the bonuses to a G-tube, you just put big syringe on the end of it and pull and out comes whatever is hanging around in his belly). When she did this she pulled out what appears to be old dried blood. Not good. The Md's came and checked it out and think that he has an erosion of his stomach lining (an ulcer, I guess). He said that this happens a lot with chronically sick kids. So he got put on three new medicines tonight, Reglan, Zantac, and and IV Nexium. All of these are suppose to inhibit acid in his GI tract. I can't believe that Josiah just got put on 3 new medications. I don't think I like that very much.

Today marks one year

2010-01-21T16:00:00.005-04:00

Josiah turned 8 months old yesterday and today marks one year on this journey with Josiah and HLHS. It was a year ago today that we got Josiah's diagnosis of HLHS and our lives changed forever. I was 21 weeks pregnant, having a completely normal and easy pregnancy. That day we were thrown into a world that we never knew existed, I don't think I was ever even aware of the term congenital heart disease or what a pediatric cardiologist did. I can't even describe the feelings we experienced at that time, but we remained hopeful and as always optimistic. Over the next couple of weeks we began getting more and more bad news about Josiah's condition and his prognosis, yet we were hopeful that Josiah would beat the odds. With every time line they gave us we assumed that things would go as smoothly as possible for our baby. I remember still thinking in May, when I resigned from my job, "I'm overreacting, we'll probably just be home in a month." It amazes me everyday I sit beside Josiah at MUSC that this journey has been so long and so difficult. Yet we still remain hopeful. We have so much to be grateful for this year.

As we have been watching the news this past week and we have seen the devastation in Haiti my heart breaks for an entire nation of children and families that are hurting. They are mourning the loss of loved ones, trying to survive without adequate housing, food, water and are desperate for relief. Even through our struggle God has been so gracious to us. He has met our needs with housing, food, an amazing support system both here in Charleston and at home, and an incredibly gracious church that has allowed Milo to work from Charleston so much. This has not been an easy year but even in the midst of struggle our lives are so richly blessed.

-A heart that holds on

Drug Fevers?

2010-01-18T20:55:00.003-04:00

Josiah has been running a high temp, again, all day today. It got as high as 104.3 at one point today. We were able to get it down fairly quickly when that happened by putting cold wash clothes all over him. His temp has stayed above 101 all day. We are trying out a new plan today. The pharmacist seems to think that Josiah may be experiencing these fevers as of late as a result of some drug interactions. So we are taking him off the antibiotics he's been on and hoping that his fevers come down. I am a little nervous that we are stopping antibiotics on a day when Josiah's fever was as high 104.3, but at the same time there doesn't seem to be any other indications for infection. Josiah is acting fine and his white blood count is normal. Hopefully getting rid of these antibiotics will help his fever to come down.

For those of you who pray for Josiah and our family regularly, I have a new prayer request to share. My brother and his girlfriend, Ali, were out sledding (near Buffalo, NY) this weekend and Ali had an accident where she ended up needing to be helicoptered from the sledding hill to the hospital in Buffalo. She has broken her back and is scheduled to have surgery tomorrow. Please pray for Ali tonight and tomorrow. She has a long road of recovery in front of her. Thank you for praying for Ali.

Josiah's enjoying CPT tonight!

2010-01-17T23:46:00.003-04:00

Here is a video of Josiah getting his nightly chest physical therapy. Miss Yevette decided to try a new method tonight. For all of you who have think Josiah has some chubby cheeks, this proves it!

Been a long time coming!

2010-01-16T13:16:00.007-04:00

So the biggest news of the day is that after almost 8 long months the new cafeteria here at MUSC has opened! We have been eating in a tent out in front of the hospital since 5 days after Josiah was born. This is very exciting news. The hospital is a buzz! I even had to take a picture to mark the event!

In unrelated news, Josiah is doing fine. His swelling has come down since his cath, but his lungs are still pretty wet. So we are again tinkering with his ventilator support and his diuretics (the meds that make him pee!). The past two days Josiah's heart rate has been elevated. We are not sure at this point if it is due to infection or if something else is going on, perhaps a side effect of some of the new medications he is on. I am still waiting to have some more serious conversations with our cardiologists and surgeons about our next steps with Josiah. It has been very busy around here the past couple of days and several of the Md's are on vacation for the long weekend. Here is a picture of Josiah from last night, still enjoying his fingers!

-A heart that holds on

Cath Results

2010-01-14T18:15:00.003-04:00

So I know that we have left many people hanging, wondering about Josiah's cath results. It was not our intention but we didn't receive the best of news and it has taken Milo and I some time to talk and process things ourselves. We certainly don't have things figured out yet but we can at least share news with you now.

The major goal of the cath was to determine if Josiah is a candidate for his next open heart surgery, the Glenn, and to get a clearer idea of his overall heart and lung status. Josiah is unfortunately not a candidate for the Glenn. His lung pressure are way to high for him to tolerate the way they would re-plumb his heart with this surgery. He has what would be called pulmonary hypertension, which is not good. The high pressures in lungs make it more difficult for his heart to pump blood to them. Blood naturally wants to go to areas of lower pressure, so because his lungs are under high pressure his heart has to pump harder to push blood to them. This puts added stress on Josiah's heart and it was determined from the cath that Josiah's heart function has gotten worse due to this stress. The other very discouraging news was that when they measured the oxygen saturations of the blood in his pulmonary veins it was low. Blood leaves the lungs through the pulmonary veins. So that should be the point when the blood holds the most oxygen. Even in heart babies blood at that point should be well oxygenated, in the 90- 100% range. His saturations there were in the low 70's and this was while he was being given 100% oxygen from his ventilator. They attempted to turn his oxygen down to room air (21%) to see what his saturations would look like and they dropped into the 50's. What this means is that Josiah's lungs are not able to oxygenate his blood very well at all, making it pretty clear that Josiah may not be able to come off the ventilator for a very long time if ever.

We still have many questions to ask and hopefully answers to find about what our next steps are, though they are limited it seems. As of right now they have put him on some additional medications that will help to relieve some of the stress on his heart.

I'm not even going to get into Josiah's long term prognosis at this point because we have more talking to do with the doctors and I don't want to put things out there in blog world that are not true. So we will keep updating as we have further discussions with our doctors. Our surgeon is out of town right now and we have several questions for him, so it will be next week before we get a chance to speak with him.

Thank you for you prayers and support as always.

- a heart that holds on

Cath Update #3

2010-01-13T13:54:00.001-04:00

Got another update. Cath is done, Josiah will be back in PCICU in an hour. Just when you think it's going to be several more hours they surprise you!

Cath Update #2

2010-01-13T13:10:00.003-04:00

Just got another update. They are finished getting pictures and pressures (don't know what the pressures are yet). His coractation of the aorta has been confirmed and so they are going to do the procedure to ballon it open. We were told yesterday that if they had to do that they were going to need to get to the heart from another location. So I am assuming that they are going to have to spend some time getting restarted.

Praying that all goes well as they open up his aorta and that Josiah remains stable.

Cath Update #1

2010-01-13T11:32:00.002-04:00

Just received word that they have just begun the cath procedure. They took him back at 7:30am and have just now gotten the access to the arteries they needed. We were told it would be about 4 hours from this point. Thanks for praying.

Josiah just discovered his lips!

2010-01-12T22:13:00.000-04:00

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Heart Cath Tomorrow

2010-01-12T21:30:00.000-04:00

Josiah's heart cath is scheduled for tomorrow morning. He is the first case, so he will be taken to the cath lab around 8am. The procedure will be around 4- 5 hours long. While this isn't surgery it is still a very invasive procedure as they are sending wires and tubing directly into his heart. The goal of this cath is to determine where Josiah is in regards to becoming a candidate for his next open heart surgery, the Glenn. Josiah has already passed the normal age range for this surgery but his lungs have proven to be a complication in him becoming a candidate for this surgery. So tomorrow they will take measurements and check on the pressures in both his heart and lungs. They will also be able to get a good glimpse of Josiah's heart function. The other main thing they will be doing is determining if there is in fact a coarctation (or narrowing) of his aorta. The Md's think that they are seeing one by echo and so if there is a coarctation they will have to balloon it open.

We are praying for protection for Josiah tomorrow in regards to the anesthesia he will be under for several hours. Also, that the doctors would be able to get access in his arteries easily. We are praying for great pictures and accurate measurements. We are praying that the pressures in his lungs would be right and make him a candidate for his next surgery. Also, that his recovery would be smooth.

Thank you as always for your continued prayer and support for Josiah and our family.