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.

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."

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.

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.

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.

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.

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,

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

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.

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.

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

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.

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.