Taylor and I brought Caroline home around 1am on the morning of March 7 after Will had taken his final breath a few hours before. We each had a car at the hospital, so we drove home separately. It was dark and there were not many cars on the roads, everything was still and quite. Caroline was sleeping in the back seat of my car and I remember looking in my rear view mirror and seeing Will’s seat. How could he not be in there? I was too exhausted and overwhelmed and sad to process it. We walked into our house together for the first time in three months. I would have given almost anything for Taylor to be back at the hospital with Will. Being at home alone every night was challenging and lonely at times, but it was far superior than being home without Will. I don’t remember much of the next few days. I know we cried a lot. We had to tell Joshua that his little brother was in heaven and we took a painful trip to the funeral home. March 6 was the most painful day I have ever experienced, but on that day, I had Will. He was in my arms all day and I kissed him and hugged him and held his little hand. March 7 was our first day without him and we didn’t know what to do. Then the days started to pass and I felt paralyzed, we needed to take just one step and didn’t know how. Then Taylor had this idea, that we should take a family trip. I actually had the same idea too but I was a little scared to suggest it. Was that allowed? It felt wrong to just go somewhere and have fun. All I wanted to do was hide and cry and be sad. But our children had been through a lot the past three months and they are too young to really understand why we were so sad all the time. We hadn't all spent the night under one roof for 90 days. We needed to do something fun together. We needed to force ourselves to take that one step into our new life without Will. We needed to love our children and enjoy them.
So we went to Disney. There, I said it. I’m still a little hesitant to share that we took this trip and I don’t know if it's because I’m embarrassed or scared of being judged or fearful of being told what we should have done instead, but honestly it's probably a combination of all of those. At the time I barely told anyone because I didn’t know if it was appropriate to do. We ran away to the happiest place on Earth during the worst days of our lives. Maybe some people think we should have sat in our grief longer or it was too soon to go enjoy a place like Disney World and I kind of felt like that too. But then I read "I Will Carry You" by Angie Smith and found out that they too went to Disney World after getting a terminal diagnosis for their baby in utero. It kind of felt okay after I read her perspective. Now I know that grief will always be here and that it’s okay that we decided to enjoy life with our children. I can sit back into grief and pain and sadness whenever I have to or need to or want to. But I have three little lives who depend on me. It doesn’t mean I have to be happy all the time but losing Will made me want to enjoy them all the more and be more intentional with our time together. So many things were hard about that trip. Obviously, Will was supposed to be there and I had thought many times about what the twin's first trip to Disney would be like. Now it was completely different and unexpected and everything seemed to make me think about him. When we rode Small World I was brought back to the moment a few days before when he took his last breath in my arms and It's a Small World lullaby was playing in the background. I saw twins, it seemed like I saw them everywhere, like it was "Twin Weekend" at Disney and I couldn't help but be heartbroken for my twinless twin. It was hard but we had to take a first step somewhere and Disney seemed like a pretty good start. So we rode the rides and ate the food and carried around the expensive balloons. We smiled. We were together and around tons of people who didn’t know who we were or what had just happened to us. We came back and it felt like we were beginning a whole new life. We stepped into the same house we have lived in for four years but it seemed brand new. Before it was a house that we lived in as a family of six. The babies had a crib in our room and there were two rock-n-plays in the family room. Our table has six chairs and I knew the one where Will would have sat one day. What I didn’t realize when we walked back into our house that day was that we didn’t just lose an infant, but we lost a toddler and a kindergartener and a child and a teenager and an adult. We lost our baby at every stage and this house that we were coming home to held not only the memories but also all the future moments that we would never experience with Will. It will now hold completely new memories that I never thought I would make, because all the things I imagined happening in this home included him.
One week after Will’s passing we were sitting on the floor of our living room with my parents. We had returned from Disney, we had taken that one step but now what? What about all the other steps, how are we supposed to do those? That’s when the idea for The Will King Foundation was born. We were discussing how to best honor Will, should we memorialize him somewhere with a statue or a special donation. We had decided not to hold a funeral service but there were so many people who were still asking how they could support us. How were we supposed to answer? I quietly listened, unable to hold back tears as we discussed how to honor the life of my baby who was supposed to be in my arms, not a little clay jar. He was never supposed to get sick or go to the hospital or die. We weren’t supposed to be making decisions about how to honor his life. He was supposed to be making those decisions with his siblings about us years from now. Here is how my Dad recounts that night:
“A couple of nights after Will’s passing, Candy (my wife) and I were visiting with Courtney and Taylor in their home after the children were asleep. Exhausted and numb, we sat on the floor and talked about the experience, our blessings and about getting life back to normal. Overall, we talked about God’s Will and asked some questions: “What was God’s purpose for Will? Why did God put Will here for just 96 days and then take him? What is our responsibility to fulfill that purpose?”
The next morning Courtney sent me a message. In short, her heart was telling her that there are other newborns that have medical needs requiring specialty care like Will and Caroline had received but they never get it because their families don’t have the resources. I said to Courtney: “That’s the purpose. That’s God’s will. We are supposed to use Will’s experience to make a difference.”
Within minutes Courtney was on the phone to Dr. Ettedgui, the pediatric cardiologist that took care of both Will and Caroline. Courtney and Taylor had developed great respect for Dr. Ettedgui and knew that he had a deep passion for caring for children. Courtney told Dr. Ettedgui about Will’s purpose and he told her that he had identified a child in need of heart surgery. He could do the surgery, together with the charitable support of Wolfson and UF Health, if the money could be raised to fly the baby and her mother to Jacksonville and provide a place to live while they were here. With that, the purpose was clarified, The Will King Foundation was established, the $’s raised and the successful surgery is now complete.”
That baby was Avery. Now, six months later, we have been able to sponsor three children who have all received successful medical treatment. We have spent time with their families and prayed for them. They always say how grateful they are and how much we have done for them. It is humbling and a blessing, but they are wrong. We have gained much more than we have given. Getting to be a small part of these families’ journey is a true gift. They are helping us. They are helping us have a purpose to keep on living despite wanting to just give up. They are helping us honor our precious son and keep his legacy alive. They are helping us shape our children into people who love and care for others. They are helping us bring the Gospel to the nations. They are helping us grieve in a productive way by giving back to others instead of turing into ourselves. They are helping us by being our friend, by telling us how sorry they are that we lost Will while they themselves are enduring one of the greatest trials any parents can ever walk through. It never feels quite right to say how much I enjoy meeting these families and working to share The Will King Foundation. It wouldn't exist, after all, if Will was still here. But I am learning that you can grieve and enjoy life at the same time. You can suffer loss and experience unimaginable heartache but still go to Disney World and smile with your children. It’s okay to be sad but also driven to making a difference. It’s okay to use heartbreak to make something good. It’s okay to let sorrow and joy intermingle. There is no right or wrong way to grieve or experience loss or hardship or trauma. There is no too soon or too long or too fast or too slow. There is no getting over it or moving on or forgetting it ever happened. There is just trying. Trying to enjoy, trying to bring love and light to this world that so often brings us pain and sorrow. I’m learning that there is no rulebook or guide or specific way to do this. It’s all okay.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!