Community has been on my heart and in my mind lately. Being part of a thoughtful community is something I experienced while we were at the hospital with our babies as well as after like no other time in my life. I am so thankful for the way our friends gathered around us during that time and I would like to use The Will King Foundation to continue creating and cultivating that type of community. There is a clear distinction I want to make here between just being part of a community and being a part of a community that is characterized by thoughtfulness, empathy and compassion. A community is a group of people who simply live in the same area or has a common characteristic. A neighborhood, a church, an office or a group of people who all like the same cookbook are examples. A thoughtful community is a step beyond, linking arms with the tribes, squads and families of the world. It’s a group of people who encourages all it’s members, inspires personal and collective growth and often anticipates needs before they are voiced. They genuinely want to see others thrive as opposed to using others to make themselves look or feel better, therefore being a part of the community brings out the best in every individual involved as well as those around them. They are willing to make sacrifices, always offer to help and are happy to put the needs of others above their own. They make everyone around them feel valued, work together towards a common goal, big or small, and accomplish positive change together They create something that is unbreakable, resilient and strong. When they see someone in crisis or an emergency they don’t just think or say, “I’d really like to help” or “let me know what I can do” because they know that the thinkers and sayers aren’t the ones who create community. It’s the thoughtful doers who know how to show up and make a real difference. They are not a community because they live close to each other or have a similar interest. They are a community because they choose to be, living and working together willingly, joyfully and harmoniously.
Let me give you some examples of how our friends showed up for us while our babies were sick. I had a friend who made me lunch. Literally she went so Zoe’s Kitchen and got chicken salad, dropped it off with some crackers and every day for that whole week I would pack it in a lunch box and take it to the hospital with me. It sounds simple but this was so incredibly thoughtful and appreciated. One, the least of my concerns was eating, but it’s something that was really important not just for my own health but also because I was trying to pump milk for two babies. Two, I didn’t want to take the time to go get lunch because that meant being away from my babies. This same friend helped my children enjoy Christmas activities, met my mom for playdates with our kids and kept Will’s older sister for me. Another friend sent us food, for us and our children. Easy breakfasts, Christmas treats and she even included lots of items made with oats because she knew it would help my milk supply. She also organized playdates, offered to pickup anything we needed whenever she went to Target and had Will’s big brother over for the afternoon multiple times to play with her kids. People sent us care packages directly to the hospital, dropped off frozen dinners and a group of my friends all got together and contributed gift cards to restaurants so we could get quick and easy dinners. A group of women that I work with sent us an Uber Eats gift card. This is particularly thoughtful to me because I work mostly with woman who I have never even met but they still found a way to help. On the morning that Caroline had a pulmonary hemorrhage I was planning to go to a Santa breakfast with my two older children before going to the hospital that day. My husband called me as we were getting ready, explained what was happening and my mom took me immediately to the hospital. I thought Caroline would be dead when I got there. As I left, my four year old son was crying, hugging me and saying that he wanted me to come, that I was supposed to go to the Santa breakfast with him. I didn’t know what to do, I had to go to the hospital but I didn’t want to leave him, he needed to have fun and me leaving was crushing his spirit. My dad still took them and on the way to the hospital my mom called a family friend, woke him up and asked him to go to the breakfast to help my dad with the two children. He was there. A table was all set up for them and he, along with many others, made sure they had so much fun. I am so thankful that we have a community of thoughtful individuals who were there for us during some of the most difficult days of our lives.
The support has not stopped just because we are no longer in crisis. Since establishing The Will King Foundation we have had so much support from our community, near and far. We have been able to say yes to every sponsorship because of the generosity of people who have donated and supported us. Recently we have had people in the community, some who we personally know and others who we don’t, reach out asking if they can contribute. They have an idea, a way to use their business to give back or an idea of how to raise awareness and share Will’s story. Their idea sparks an action. That action is the support we need to continue to carry out our mission, caring for families and providing medical treatment for children. I see the mission we have established as more of the end goal but the way we get there is truly special because we do it by uniting together to make a difference. There is nothing that creates community like having a common mission, something you are all working for together and aspiring to achieve. This vision inspires me. It's working together along with our family, friends and neighbors to support the medical needs of children while also sharing our inspiration, Will. It's teaching our children about giving back and showing them tangible ways of how we can do that alongside others. Whether it’s a fundraising effort, a platform to share Will’s story or an intimate conversation, I think it all brings people together because we are working towards something bigger, something important, something meaningful and powerful that we all care deeply about. This is the spirit of community that I would like to capture, replicate, encourage in my children and cultivate as a defining characteristic of our foundation and our family.
I’ll be the first to admit that I am not a fan of unwanted advice, but I feel that I need to give some here. If you know someone in a crisis, difficult situation or that needs support, I would encourage you to take action. When someone is in a crisis, they simply cannot do anything except focus on that crisis. So if you generously say “please let me know what I can do for you” or “I would love to help in any way” they probably are not going to be able to say anything. I have done this so many times, thinking it opens an invitation for the person to reach out if they need anything and it does, which sometimes is really all you can do. However, now I know that it is probably just asking them to think about one more thing that they do not have the capacity to think about. If you really want to help then you have to do just that - help. Without being asked or told what to do. Imagine yourself in that person's situation, even if you have never experienced it before, and ask yourself “what would I need if this was happening to me?” and then do that. Don't wait for someone to tell you exactly what to do or reach out with a specific request. If they do, great! Go above and beyond to fulfill their request. However, in a real crisis, this seldom happens so don’t wait for the person in need to tell you how you can meet their need. If you really don’t know how to be helpful but want to, think of a few ideas and ask which one would be best. Multiple choice is better than fill in the blank. My brain could literally not process or think of one more thing but if someone said I can do A, B or C I could have picked and said yes, do that. Who can you help today? It doesn’t have to be someone in a crisis like ours. Do you have a neighbor that could use a home cooked dinner? Don’t ask, just take it to them, say, “hey, I’m going to bring dinner by tonight, will you be home around 6pm?”. Do you know a family who has just experienced a tragedy, loss or difficult circumstances? Think of what would help you most if you were experiencing the same situation. Last year when Hurricane Irma ripped through our city thoughtful community came out everywhere. People were raising money, volunteering to clean up and opening up there homes for people still without power. They didn't ask, "Is is okay if I organize a fundraiser to help cover some of the cost of damages to your home?" No, instead, they just did it, collected the funds and gave it to the family in need. It comes down to this - be intentional, be emphatic and take action. We had so many people do this for us and I don’t think I can ever truly express our gratitude to them. Now it’s our turn. With your help I believe we truly are making a difference and in my mind we are just getting started. To me, that’s thoughtful community.
I’ve been presented with this idea lately that we shouldn’t let our trauma define us. At first I thought it sounded good, the side effects of trauma shouldn’t be a dark cloud looming over every part of our life. It shouldn’t be what our identity is rooted in or even what we are known for. That was my initial reaction to the idea at least. However, I have been thinking about it more lately and unless someone can present an extremely compelling reason why these are words to live by, I’m going to boldly say that I disagree. I disagree because I think traumatic pasts, situations or events will define us, despite our best efforts to push it down or hide it or dress it up to mascaraed as something else. Until the day that we took our twins to the hospital and the 96 days following I never experienced real trauma. There were challenges, situations that were devastating and long periods of time where I really struggled. But trauma? No. Trauma is an event or experience that is deeply distressing or life threatening. Trauma causes an exuberant amount of stress and pain that we have no ability to cope with. Trauma causes deep physiological, physical, mental, emotional and spiritual pain. It can trigger anxiety, depression, guilt and a whole spectrum of emotional damage. Trauma is different from a hard time or a difficult experience or a sad event. It is dark, all encompassing and deeply hurtful. It comes to us and never leaves, unlike that challenging situation that is now resolved, that hard time that you pulled yourself out of or that struggle that you came out on the other side of. It’s life altering and inserts itself into every single area of your life, weaving itself through ever fiber of your being regardless of how hard you fight to keep it out. It creates a new identity for us, it births a new human that is a dim reflection of the life that existed before it was sabotaged by trauma. This is why I believe that saying “trauma shouldn’t define us” is a lie, I don't think we have a choice.
I do however think we choose how it defines us. I know this might be an unpopular opinion because if you google “letting trauma define you” you will find tons of guides, steps, articles and resources about how to not let trauma define you. So let me just say this, I am not a therapist, counselor or physiologist of any kind. I don’t know about other traumatic situations. I have never been to war or witnessed a school shooting or been the subject of abuse in any way. My thoughts could be totally wrong and unhelpful to others working through their own trauma. My idea of what the word “define” entails may be completely different from what it means to you. Please feel free to not consider my viewpoint and go find a qualified professional to talk to. All I can offer is personal experience and specifically the only spaces I can talk out of are those of almost losing a child and losing a child. I’m not into the game of comparing hardship, but I think mostly anyone will agree that child loss is among the most devastating of all human experiences. Having a sick child and enduring an extended stay in the hospital with that child has to be up there as well. I will never be the same person I was before I gave birth to our twins. It’s not possible. The trauma of the whole situation and the single event of holding Will as he took his last breath will define me forever. Whether it should or shouldn’t, whether other people like it or not or think it’s healthy or unhealthy, I will never exist without that person being a part of me. Letting it define my life or not is honestly out of my control, it’s going to no matter what I do or don’t do. What is in my control is how I let it define me. That is a choice. I can choose to let the trauma produce something positive, honest and helpful or I can choose to let it create a negative, self-centered and sad existence. Honestly, I think the latter would be easier. I could easy decide to wallow in my sorrow, make excuses and let others continually take pity on me to get what I wanted. I could take pity on myself and decide to just stop trying because really what is the point anymore? I could spend my days hiding alone in my house, not connecting with anyone or making any effort to be a productive member of my family or community. Honestly, that sounds appealing sometimes and definitely takes way less effort than the other option. However I have never been one to choose the easier option because I believe more often than not easy is not necessarily best.
I’m a perfectionist, so I like to strive for the best all the time. For me, the best option is to let the trauma I have experienced drive me to be productive and intentional with my time, energy and resources. This plays out first and most importantly in my family. What if I just decided that I was going to be sad and withdrawn all the time and give up on life? How would that affect my husband? My children? My friends? My community? I cannot fathom a situation where that behavior produces anything positive or good. In fact, all I can imagine is how much more harm it would inflict on everyone around me as well as myself. What a difficult life my children would have if their mother was constantly disconnected, unresponsive and angry. What an unfulfilling relationship I would have with my husband if I choose to be disengaged and uncommunicative all the time. Instead, I think the trauma should be used as fuel to drive me not just to be good or great but exceptional. Exceptional marriage, exceptional mother, exceptional friend. This also affects my relationship to the world around me. The reason why I share Will's story and strive to make this foundation a success is because I have chosen to use the experience to help others. Again, it is not the easy choice for me. I am not entirely comfortable with sharing such personal details of Will's life and death with the world. It is hard for me to visit sick children, in fact I have not been to the hospital to visit any of the children we have sponsored because I cannot step foot in the place where Will last was. But I will continue to make good come out of our tragedy, even if it is the more difficult option, because I refuse to let Will's legacy be filled with anything else.
Because of what we have experienced I have a very real and deep understand of how fleeting life is. You always hear the notion that “it could all be over in a second” and I’m here to tell you that it really could. One second we were taking our babies to a well check appointment and the next second we were on our way to the ER. One second we thought Caroline was getting better and the next second she was throwing up blood, barely breathing and in a life-threatening situation. One second we held Will in our arms and the next second there was a flat line on his monitor. One second. Why would I waste any of those precious seconds doing anything else beside creating something positive, helpful and exceptional with my time here on Earth? Some of us get 96 days, some of use get 96 years, either way we all have the choice to make an impact with what we are given.
I challenge those of you who have experienced real, true, life altering trauma to let it define you but don't let it control you. Let it define you in the best possible way, allowing it to drive you to do something that inspires you, blesses others and brings joy to you, your family and your community. Let it propel you to gratitude, not bitterness or entitlement. I will never claim that this will be easy and I will always admit to failing at it continually. I may be a perfectionist but I am no where close to perfect. I will be sad, heartbroken and withdrawn at times. I will snap at my husband and get frustrated with my children. I will have moments of struggle, negativity and complaining. I will want to give up, I will lose my motivation and fail to focus. I will let the trauma I have experienced take over and I will have pity on myself and wish others would do the same. But I will always choose to try again. I will always choose to let Will inspire me to be exceptional because I think he deserves to have the best mommy who represents his life and legacy well. I will choose to let this trauma shape me because that means Will helps define who I am today and I want the person who cared for, fought for, sacrificed and loves that sweet baby boy to always be a part of me. He will always be the best in me and I will always strive to do my best for him.
Sweet Will in mid-January. Helplessly watching this baby and his sister get sick, staying in the PICU for three months and holding Will in my arms as he took his last breath will always define me. But I refuse to let it reduce me into a negative, self-centered, hateful person. Instead I will strive to make Will the best of me, letting his courage, strength, perseverance and joy define me as long as I live.
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.
Multiple times a day I think about what a miracle Caroline is. I believe that all babies are miracles, but I personally witnessed a baby, my baby, live when, according to science, she really shouldn’t have. Her numbers from her blood work were always worse than Will’s, she had a pulmonary hemorrhage that could have very easily taken her life and she had the same exact diagnosis as Will. She contracted the same virus that took him from us. My daughter, Caroline, is a miracle.
Coming home from the hospital was a challenge and very scary for me. I have described before how fearful I was to bring her home by myself (click here to read more). During her first nine weeks at home, Will was still at the hospital and Taylor and I were barely at home together during the day and never at night. She was tiny and fragile and the next few months were filled with doctor’s appointments and visits to specialists. I didn’t realize that after you leave the PICU you don’t actually just get a free pass home. You spend months, maybe even years, following up. I don’t want that to sound negative because I am so thankful that we have an amazing pediatrician who is cautious and would rather send us all over the city getting check ups rather than wait for a problem to arise. An ounce of prevention is worth a pound of cure. I just wasn’t expecting it. Here is a little bit of what Caroline has been up to for the past eight months, celebrating all the progress she has made and a look into her future.
Caroline in the PICU, only a few weeks old, and Caroline now, nine months old.
In the months immediately following her release from the hospital, Caroline had follow-up appointments with every specialist that she had seen during her PICU stay. She had to either be “cleared” by each specialist or continue to have follow-up appointments until they felt she no longer needed to see them. The first appointment was with Cardiology. Our favorite, very patient doctor, was pleased with Caroline’s echo and said her heart was getting stronger and should make a full recovery. She came home with no heart medications and will go back when she is one to follow-up. Our next appointment was with neurology, where she received an exam and I got a mini-crash course on the human brain. We went over her CAT scans, MRI’s and head ultrasounds and I came in with a long list of questions and concerns that the neurologist diligently went over with me one by one. He concluded the check-up by saying that the only reason Caroline will suffer from any neurological issues would be because of me, if I treated her differently because of what she had been through - I guess I’m not good at hiding my paranoia. He was joking of course, but he did clear her and doesn’t have any reason to think she will need to follow up in the future. She has had two hearing test with an ENT. One side effect of one of the medications she was on in the hospital is hearing loss. She passed both tests and will have another one when she is two years old. Her next follow-up appointment will be with an Ophthalmologist, who will check her eyes.
Caroline had frequent visits to the Pediatrician’s office for extra check ups and weight checks. She started off not even on the growth chart. By the time she was two months old she was ten pounds, almost double her birth weight. At four months old she was 12 pounds and in the ninth percentile, she had made it onto the chart! At six months she moved up to the seventeenth percentile and at her most recent nine month check she was in the nineteenth percentile, weighing in at sixteen pounds. She might be tiny but she is a strong and determined little girl, gaining weight and growing just like she is supposed to.
I sometimes forget that Caroline is a little bit behind because she is so active, alert and responsive. Cognitively, she seems to be like any normally developing baby and I forget that her traumatic start to life has put her a bit behind physically. Just for reference, here are some photos of her brother and sister, both at nine months old. My son, who has always been in a lower percentile, was seventeen pounds at nine months. He was crawling well and pulling himself up to stand. Caroline's older sister is usually right in the middle of the growth chart, usually the 40-60%. At nine months she was eighteen pounds and standing, crawling and easily pulling herself up and going back and forth from sitting to crawling. Caroline sitting up well and can stand with help. She is working to reach her other milestones in therapy.
At six months, Caroline got evaluated for physical (PT) and occupational therapy (OT). She was not only premature, but having spent the first month of her life in the PICU set her back a little bit. PT and OT will help her reach developmental milestones so that her physical ability can catch up to her cognitive ability. She started PT around seven months old, not sitting up or rolling from her tummy to back. After two months she is doing well sitting up on her own and is working on twisting from side to side and eventually getting into a crawling position from sitting. Her OT goals focus on grasping, crossing the midline and sensory processing. She seems to be overly sensitive to loud noises and certain textures. Will’s OT in the hospital explained to me that babies who have been through a traumatic experience during or after birth often develop an aversion to touch or sound. Every touch she experienced in the hospital was aggressive - a needle poking her, something going in her nose or being put into an uncomfortable position for a scan or a test - and she is experiencing residual effects from that. She will continue with PT and OT for as long as it takes for her to catch up and she will also have a feeding evaluation with a speech therapist at the end of the month.
One of Caroline's Physical Therapy sessions at eight months old.
As a nine month old, she has experienced more trauma than I ever imagined. Despite the obstacles she has faced, she continually proves to be a sweet and charming little girl. I always say that Caroline sees the world in black and white, there is no gray in her mind She will either be the happiest, smiliest baby you have ever seen or scream louder than you thought possible for someone her size. Her smile literally lights up a room and we are admittedly obsessed with everything she does. I have had so many strangers stop me and tell me what a beautiful and happy baby she is and most of the time I think, “If you only knew what this little girl has overcome.” She has the best laugh, loves being carried around on my hip and will grab anything you put within her reach. There are multiple times each day that I am overcome with gratitude that she is mine, that I got to keep her and see her beautiful smile every day. I am so thankful that I am not missing Caroline’s life and at the same time I feel the equal amount of heartache that I am missing Will's. She reminds me of him every day and even though she will never know her brother, I truly believe that she will always carry his joy and strength and courage with her.
The last video we took of Will, sleeping peacefully, on February 27, 2018.
Will was pretty stable the last few weeks of February. The doctors were making small tweaks to his medications, dialysis and ventilator but there were no big changes or surprises. A lot of time was spent talking about Will’s future and how we were going to move forward. The nephrologist thought that Will’s kidneys were most likely not going to start functioning, which seemed to be the biggest issue. He was probably going to need a kidney transplant, but he couldn’t be considered until he was about 22 pounds, at least a year. Maybe he would be in the PICU for that amount of time, waiting until he could be transferred and evaluated for a transplant. Maybe he would be able to come home and grow here, we didn’t know. The other concern was his heart. It was extremely weak in December, then we saw a big improvement as we entered the new year. After a few weeks his heart function got worse again, but still not as bad as it was at first. It seemed to be largely related to his fluid balance, but there was still the question of how much it would or could improve and if a heart transplant was potentially in his future as well. All of this talk about transplants and Will's future was full of so many unknowns not just for us but the doctors too. They didn’t know if he would even qualify based on many factors, mostly his brain bleed and the poor function off multiple organs. Plus he was a baby, which seemed to complicate everything even more. If he did qualify, we didn’t know if one of us would be a match for kidney donation and we didn’t even want to think about the details of him getting a heart. This path of transplants was one very real but uncertain direction for Will’s future. It seemed very overwhelming to me, but not unreachable. I would have done anything and everything to get Will whatever he needed to live. Most of the time I was just happy that they were talking in terms of the future and saying phrases like "at home nurse" and "in a few years..."
Another, more positive and desirable path, was that Will’s kidneys would start working on their own. We were told that this was most likely not going to happen, that it would be a miracle. We had just seen miracle after miracle as Will continued to get better and Caroline came home, we have a big God and believed that He could do another miracle for Will. It seemed like if his kidneys would function on their own, even if just one could work enough to do it’s job, then the other things might fall into place. His heart might get stronger if it wasn’t fighting fluid overload and eventually his lungs could develop enough to remove the trach so he could breath on his own. Sometimes thinking about the best case scenario is the only thing that kept me going. I am a natural planner, I'm optimistic but realistic as well, and I imagined every possible situation and made it work in my mind. We prayed, we hoped and we wondered but we never expected an answer. We knew that Will would take the path God had laid out for him, regardless of how much I fought to find a solution.
At the end of February I met with all of Will’s doctors, specialists and some nurses in charge of his care. We were discussing all these possible options and how to help Will keep getting better and grow while we waited to see what was going to happen. Misty came to the meeting. I have written about some of Will’s nurses who mean so much to us, but if you have been reading my posts you know that Misty is extremely special. I don’t know how to express what she means to us because there are no words that describe it. Misty was wonderful. She loved Will and she was there for me, she was there for all of us. She didn’t just listen to my concerns, answer my questions and chat about ordinary things to help distract me from the horrific reality going on around me - she did all those things - but she was really there. Completely present. When she was Will’s nurse we knew he was going to be taken care of above and beyond the standard of what was expected from any nurse. She not only made sure he was clean and comfortable, but she made sure his room felt calm and organized and fun. She made him CD’s with Disney lullabies and played movies for him. She dressed him and played with him and talked to him. Her job description included giving him medicine, monitoring his vitals and taking care of his physical needs . She did SO much more. She really cared. She didn’t have to come to this meeting, she came for Will, and she took notes and shared her concerns. She knew him better than any doctor. She spent 12-hour shift after 12-hour shift taking care of Will. After all the specialist talked and shared their ideas, concerns and plans, Misty interjected and I was relieved. At this point I was on the verge of a complete meltdown and I couldn’t say anything. I was just trying to get through the meeting so I could go into the bathroom and cry by myself. She spoke as a medical professional but she also was my voice, speaking every concern I wanted to bring up but couldn’t. She knew that Will was not himself. Over the past few days he had changed. He was swollen, uncomfortable, inconsolable at times. It was a different type of agitation. Not the kind of uncomfortable that was solved by a diaper change or switching positions. Will was a calm baby by nature, he was very low maintenance in the sense that he tolerated a lot, a lot more than can be expected of any human. The past few days it seemed like everything made him upset and he just couldn’t get settled down or comfortable. He hadn’t slept and his alert, kind little eyes seemed to be glazed over. Misty knew it and made sure everyone else knew too - something is wrong and we need to figure out what it is.
On March 2, they started the process of exploring every possible reason as to why Will could be declining. More blood tests, samples taken and tests performed. Nothing came back that indicated a change. No positive cultures, no infection, no reason for this sudden decline. Theories were flying around everywhere but nothing pointed specifically to why he was suddenly deteriorating. One week ago he was making such good progress. One week ago I was giving him a few drops of milk from a bottle. One doctor told us he would never drink from a bottle and he did, eagerly. He was happy and sweet and we thought he was getting better. We were planning for his future. Now all of the sudden he was getting worse, they were adding support - more oxygen, epinephrine and norepinephrine to help his heart and re-starting medications that he hadn’t been needing since December.
On March 3 I saw a twitch. No one thought it was a seizure. Doctors, nurses and the physician’s assistant all saw the twitching and they seemed to be confused by it and said maybe it had to do with electrolyte imbalance but it didn’t look like any typical seizure. They put an EEG on just to make sure. Not long after we discovered that it was a seizure, but not just a seizure. Will’s brain was having multiple seizures, sometimes at the same time, coming from areas all over his brain. I got the strong sense that it was something none of the doctors had really seen before or at least not frequently. He got a large dose of anti-seizure medication but that didn’t stop them. They added a drip of a second anti-seizure medication and were still having a hard time squelching them out. I remember standing at the EEG screen with the neurologist and he was showing me spikes where Will’s brain was trying to have a seizure. They were unstoppable and consuming every part of his brain. He was in a comatose state, sedated by multiple potent anti-seizure medications that weren’t doing their job. In my mind it felt like his brain’s way of shutting down, like it was misfiring from every location because his body was trying to die and we weren’t “letting” him.
On March 4, the doctors started increasing the dose of epinephrine. It was referred to as a “rescue medication” because without it Will’s heart was not strong enough to pump blood throughout his body on it’s own. We changed his code, Do Not Resuscitate. There was no doubt that he was getting weaker by the hour and there was still no other explanation - all cultures, all tests continued to come back negative. The seizures were still happening, even with all the anti-seizure medications flooding his little body. He was sedated so there were no more signs of visual seizures but he was still on the EEG so they knew that he was still having them. He was just laying there peacefully, the ventilator doing most of his breathing and the epinephrine helping his heart beat. That night I was at Will’s bedside with the PA. He was one of the people who I had asked a billion questions to and knew Will very well. After I asked everything I could think of, I paused and through choked back tears I said, “This is a really hard question to ask, but do you think Will is trying to die and we won’t let him.” I think the question may have shocked him a little bit, but he kind of shrugged it off, “I don’t know, maybe” and left the room.
On March 5 they added a third anti-seizure medication which basically put Will into a coma. I knew what was happening, I think everyone else did too, but no one really wanted to say it this time. In December it seemed like almost every doctor that discussed Will’s prognosis with us thought the best choice was to remove his support and hold him until he passed. In December there was so much confidence that he really had no chance but he made it through. He survived against every odd thrown against him. Now there was a sense that everyone knew that he was deteriorating quickly but no one really wanted to say it. I think it’s because no one wanted to admit it was reality. Everyone had grown so attached to him. In December he was just a patient, “Baby A.” Now he was Will. He had an identity and a personality and every doctor and nurse there had memories and experiences with him. I could tell in their demeanor and in their voices that they knew there was no coming back from this. Every organ system was simultaneously shutting down despite our best efforts to help him.
When I walked into his room on the morning of March 6, it was like he was already gone. I was hit with overwhelming clarity and looking back I think it was God’s Spirit giving me peace that Will was already with him. Now it was my turn to fully hand him over. Almost like I was selfishly holding his one little hand and I needed to let go so that Will could go with Jesus and fully be healed. I wanted to hold on to him so badly. He was mine and I wanted him. I still do. I didn’t know how this could be happening, he was doing so much better, he was so sweet and just a perfect little boy. I didn’t want it to be true but for Will’s sake, I had to be willing to let go. I talked to everyone, waiting for someone to tell me that he could recover. I sought out every optimistic doctor I knew but never found the hope I was looking for. God made him and he belonged to God but God gave him to me, he was mine. Nothing about it seemed fair or right. How could I just let him continue to sit up here hooked up to all those machines that were making his body work. How could I let him endure this suffering just because I couldn’t say good bye. I was determined to just let him ride it out, maybe he could overcome it just like he had a few months before. Maybe it was just a setback. I kept waiting for someone to confirm it and give me permission to hold on. But then I heard something that scared me. One of Will’s nurses said that we could just keep him up here like this forever. Forever. So he just lives here, in a coma, with a machine making him breath and medication making his heart beat and dialysis doing all the work of his kidneys and his brain seizing almost continually. We made the most difficult decision to stop rescuing Will. This is not a life.
“This is not a life.” These are the words that one of Will’s doctors said to me that afternoon when he came in to say goodbye. That afternoon we had a stream of people - doctors, nurses, therapists - come in to say goodbye to Will. There were a lot of tears, many thoughtful and heartfelt words but aside from Will’s nurse, Misty, this doctor gave the most genuine and sincere goodbye of them all. He came in already in tears. Just that image of seeing an ICU doctor in tears is something I thought I would never experience. They all seem so tough and calloused and withdrawn. They have to be. He sat down across from me, my precious baby boy dying in my arms, and said how his prayers have changed, how this is not a life for any child. He kissed my boy, looked me in the eye and squeezed my mom’s hand. It was heartfelt and genuine, a moment I will remember forever. Taylor and I spent that day holding our baby for the last time. Caroline, his twin sister, was with him all day, exactly as she should be. He passed away in my arms around 9pm. "It's a Small World" lullaby was softly playing in the background and I felt his body let out it's last breath here on Earth. I asked them to turn the monitors away and I didn't know if I would know the moment when he took his last breath. I did and it's a moment that will haunt me forever. We dressed him, wrapped him in a blanket, laid him in a little woven basket and said an impossible goodbye. We will never be the same again.
Taylor and Will on March 6.
My last picture of Will, taken on March 6, 2018.
There is a sisterly bond forming between my girls that has got to be the most precious thing I have ever had the privilege of witnessing. It is something I thought about when I was pregnant with our twins as I would pray that my daughters would be best friends but I never thought it would be so sweet so soon. I know it will just get better as they get older. I am always saying, “What are we going to do when they are two and three?” and really what are we going to do? These baby and toddler years are where so much development happens and I hope the groundwork for their relationship is being laid right here in on the floor of our playroom. It’s not always perfect, there is hair pulling and toy snatching and the occasional push or shove and I can’t say that I’m not already praying that it doesn’t all explode in our naive little faces during their teenage years. But for now, it is pure joy to witness their giggles and to watch Caroline laugh at her big sister or to see Emma Grace bring her little sister a pacifier when she is upset. Precious. They are so pure and innocent and have so many fun years ahead of them - living, playing, learning and loving together.
Look at that preciousness - she is saying "Love you, Cay Cay."
There is not much that makes me happier than watching their bond grow and not much that makes me sadder than thinking about how Joshua won’t have that bond with his little brother. When I thought about my boys during my pregnancy it was a little bit different than how I imagined my girls. The girls are close in age, only seventeen months apart, so I thought of their relationship as more of best friends, doing the same things and being interested in similar toys, clothes, books, and movies because of their age. With my sons I thought more about how Joshua would step into this big brother role and how much he would thrive there. Joshua and Will are just shy of five years apart, so I imagined my ten year old teaching my five year old to throw a baseball or score a soccer goal. I dreamed of Will asking Joshua to build train tracks with him or Joshua being so proud to pass down his clothes to his little brother. I’m not saying that every little boy needs a brother to experience a sibling bond, but my little boy is supposed to have a little brother here with him and he doesn’t. It doesn’t seem fair. I don’t perceive that he thinks of it that way and I am grateful for that. Maybe one day he will feel the void that Will left in all of our lives, including his own, but for now all he knows is his two little sisters and he is a great big brother to both of them. He loves Caroline and will put up with anything - hair pulling, screaming, spit up - from her. He loves to help take care of her, play with her and comfort her. Sometimes a little too much. He and Emma Grace had a rougher start with extreme jealousy constantly showing up and preventing them from being able to experience the joys of having a sibling much of the time. Now he shares a room with her and if there is anything that curbs jealousy, it’s sticking two children in the same room. It still shows up, but not nearly as much as it used to. Instead they get ready in the mornings together, they share the same books and closet and dresser and we hear them talking to each other at night after we have tucked them in. Some of their conversations are the sweetest I have ever heard while others leave my checks hurting from laughter. Sometimes when we go to the early service at church they are in the same classroom and without fail the teacher gushes about what a good big brother Joshua is every single time we pick them up. Let me just be clear - he has his moments, they have their moments - so many moments, but overall he has two little sisters who adore him. But he doesn’t have Will and that breaks my heart every day. It makes me sad for my girls too. Caroline is a twin but she will never even know her brother. Although Emma Grace met him briefly, she won’t have a memory of him and will never know her little brother either. And Joshua, if he has a memory of Will I assume it will be small and brief.
Some of the few pictures I have of my two boys together.
This is the interesting thing about grief that I didn’t really know about or expect. I feel like I am living in this constant continuum between joy and sorrow. Seeing my children love each other and take care of each other and play with each other, it is one of the greatest joys of my entire life. But then there is always the sorrow of knowing that Will is never going to be a part of it. Even on my “good” days, days where you see me laughing with my children or playing at the playground or smiling through story time, it’s still hard. It’s still harder than all of my “hard days” before I lost Will combined. It’s still hard because there is always someone missing and even if I don’t always talk about Will, I am always thinking about him.
The loss of a child is not something you get over or move on from. Maybe there are some people who think that is unhealthy or unrealistic because with many other losses there is an expectation that we will eventually move on. Think about it. You lose a job or a relationship or a pet or a house - each of those events is tragic, heartbreaking and life altering, but aren’t you expected to move on? It doesn’t mean you never think about your childhood dog or wish you had that house or job or whatever back again, but at some point you stop mourning the loss and create a new life where you aren’t dwelling on the loss. Even with death, the death of a mother or father or grandparent or spouse or sibling or close friend or whoever in your life, don’t you hear people saying that after you grieve you should move on? I don’t think the idea is to forget that person ever existed, I think it’s more of a sense that we should continue to remember them, talk about them, honor them and miss them, but their death should not define our life. You hear about the “stages of grief” and after you have gone through those stages you should be over it and not have to grieve anymore. The tragic event, loss or death happens, the ones left behind move through the grief and have a period of mourning and then it’s over and you are on to a new stage, a new life the doesn’t coexist with the grief of the old one. This concept dates back to the Old Testament, Deuteronomy 34:8 says, “And the people of Israel wept for Moses in the plains of Moab thirty days. Then the days of weeping and mourning for Moses were ended.” Ended. This mourning period was a common Jewish custom and the amount of time allowed for the grieving period varied based on the importance of the person. They would spend that time, be it seven days or thirty days or however many days, weeping and not eating and also doing things like tearing their clothes and sprinkling ashes on their head. They would even hire “professional mourners” to stand outside of their houses weeping for the deceased loved one. After the mourning period was over they would do annual remembrances of their loved ones who had passed. But what about all the other time?
All the other time for me is spent somewhere in the middle of this continuum. Sorrow on one side, joy on the other and in the middle they are both mixed together at varying degrees. There is this viral video about a mother orca whale who has been carrying her dead calf through the ocean for days right now. She is experiencing extreme grief the only way she knows how. She literally carries her baby with her because she cannot let go. Apparently this is a common ritual among orca whales, but this mama is making the news because she has been carrying the baby longer than most. When her baby starts to fall or sink into the water, she picks it back up and continues on. Researchers are calling it a “tour of grief.” When she no longer is carrying the physical body of her baby, I assume if she is anything like us humans, she will always carry that baby with her. I don’t think the mourning will ever be over for us. I don’t see a time in the near or distant future where grief isn’t a part of my life. I don’t see a time where I am not carrying baby Will with me, wishing he was here in my arms or racing cars with his big brother or playing with his sisters. There is no mourning period or grief steps or moving on. This is our life now and whether joyful or sorrowful or somewhere in between, we will always and forever carry Will with us.
There are times when I know God is speaking to me. If you aren’t a believer in Christ, I know the next paragraph, actually probably this entire blog post, will make me sound like a either total nut job or one of those judgmental religious people who hold up a sign outside the Jags game that says “You’re going to Hell” and maybe even yelling at you through a bullhorn. That’s okay, I make a conscious effort to be as non-judgmental and non-religious as I can, but I think being a Christian is supposed to make me look different and that might make others uncomfortable or skeptical. Just try to stick with me. Believers, you know that undeniable voice of the Holy Spirit? I heard it on Sunday. It might be cliche but I heard it through our Pastor during church, that nudging on my heart telling me that God had something in store, something big, something important, something that would honor and glorify Him. The passage was Romans 15:8-33 (listen to the entire sermon here). Paul urging the Jews and Gentiles in Rome to live a life poured out for the Gospel of Christ. A life well-lived is not measured by status or accumulation of things or worldly achievements. The only thing we can take with us to heaven is people, not our stuff or status, so we ought to be living on mission every day to share God's message of salvation. Such perspective. As I’m hearing this I am overcome with gratitude that God has given us an outlet, a platform, to carry out this mission through Will. I’ve always known it and recognized it as a gift but it was just crystal clear as I listened to our Pastor unpack this passage. The Will King Foundation is not an experiment or a side project, it an avenue for us to glorify God by not just helping others receive life-saving medical treatment but most importantly by sharing with them the life saving news of the Gospel that could change their eternal trajectory.
When Taylor and I were in college we wanted to be missionaries. Reach the nations, Africa specifically. We would gather in prayer for unreached people groups and shared our desire to bring the Gospel to people who have never heard it. I remember reading “Five Who Changed the World” by Daniel L. Akin, a book that shares biographies of five missionaries who changed the world through their obedience to the Great Commission (Matthew 28:19-20 which tells believers to go and make disciples of all nations). I was audacious enough to think that God could use me to be one of those world changers. I say audacious because I was immature and self-centered and thought that I had something to offer. That God would use me because I was smart or well-educated or could quote a bunch of scripture. My intentions were right, but my heart was in the wrong place. I was pouring my life into achievements for God, looking like a “good christian” and impressing others with my passion for missions when really I was just like the Pharisees. Like a white washed tomb (Matthew 23:27), I looked good on the outside but I was too loud, too wrapped up in myself to really listen to the Spirit of God inside me.
Just for fun - here we are in college - two kiddos with hearts to impact the nations with the Gospel with no clue how we were going to do that.
Fast forward ten years. I am more heartbroken and weak than I have ever been. Most days I have nothing to give because grief over losing Will and caring for his three siblings takes literally everything out of me. But God is working in and through me and because I am humbled, because I have nothing to offer of myself He can truly receive all the glory and all the praise that He deserves. It has nothing to do with me. Our Pastor told a story during this sermon about a time that he was at dinner with Billy Graham. First off, can we just pause and imagine how incredibly amazing and surreal that must have been? Eating dinner with a true world changer, someone used by God to bring thousands into the Kingdom of God. A multitude of souls are in Heaven because they heard the Gospel from Reverend Graham. Our Pastor asks him this question, “If you could preach one more revival, what would you preach about?” Billy Graham responds that he would preach on Galatians 6:14, “But far be it from me to boast except in the cross of our Lord Jesus Christ, by which the world has been crucified to me, and I to the world.” Our church has this awesome nursing room for mothers. It has a comfy couch and a TV with the sermon playing and it is quiet and calm. I was in that room, sitting on the couch holding sleeping Caroline and it all seemed so clear but far too simple. Those world changers, the ones who have brought the Gospel to the masses and the unreached people groups and the nations, they all did just one easy thing - boasted in Christ.
At this point I was on fire, dreaming of all the children and their families that would get treatment through this foundation, hear the Gospel and take it back to their nation. I thought of these little children reading the Bibles we give them one day and trusting Christ with their lives. It’s always been what God has put on my heart - reaching the nations, impacting others with the Gospel - it’s just not the way I thought I would do it. I pictured myself living in the depths of the Congo or in a village in southern Africa singing songs about Jesus with children and teaching their mothers how to read the Bible for the first time. I never imagined that I would get the opportunity to reach the nations through the personal tragedy of losing my most precious child. And if I’m really honest, I would give it all up - all the lives that I believe God will change, all the nations that will hear the Gospel, all the children that will read a Bible for the first time - I would happily, willingly give it all up if I could have Will back. One for many - I would exchange everything if I had the choice because that one life given was my son. It really puts an entire new perspective on the Gospel, doesn’t it? God willingly, sacrificially gave His Son to cover the sins of many. God experienced the deepest pain of watching His Son die on a cross so that I could be forgiven, so that I could have eternal life with God, so that my wrongdoing could be atoned for. I would never choose to give up a child, not for anyone or anything, but God - “God so loved the world that He gave His only Son, that whoever should believe in him should not perish but have eternal life” (John 3:16).
Impact is not measured in quantity or massive amounts. I think that world change starts in our homes because most importantly, I am a minister of the Gospel to my family, my three children. If God cannot entrust me with that how can He entrust me with more - Will’s foundation and getting the opportunity to effect change worldwide? It’s a gift, a blessing and a privilege that I will never take for granted. Getting to be a part of global missions is a dream that God made come true in my life in a completely different and unexpected way than I ever hoped for or imagined. Although I would trade it all in for Will, that’s not an option and instead of wallowing in that (although sometimes I do) I think that what Paul is saying is to boast in Christ instead. Don’t get so wrapped up in the things of this world that you miss the Gospel, you miss what God is doing in and through and around you because of what He already did FOR you. Focusing on grief and pain will only lead to more grief and pain. There is a place for it and in my life that place is quite large at the moment, but it turns our view inward, to ourselves. It is so easy to get wrapped up in being sad or missing Will that I can miss what God has for me, for my family. I will miss my boy for the rest of my time here on Earth and I will always want him back, but Will is safe. He is with Jesus, completely whole and protected.
We started our freshman year of college over ten years ago and God has grown that desire in my heart to share the Gospel with the world into something beautiful through my greatest tragedy. As I look at my lonely copy of “Operation World” on our bookshelf I am thankful that now I don’t get to just pray for unreached people groups, I get to pray for actual people. With names. People who I personally know. I get to pray that children who are a part of The Will King Foundation will be world changers. I hope that I am able to continue following them as they grow up, but maybe I will never know what they ended up doing or becoming. It doesn’t matter because I truly believe that they will create change - some as business men and women, some as parents or teachers or entrepreneurs or political leaders. Maybe some will work in ministry or be preachers or church planters, others become doctors or nurses or public servants who spend their lives helping others. Some of them might have a positive impact their family or community by simply being a kind and compassionate person to those around them. I don’t know what God has in store for each of their lives, but I am extremely honored to know them, children who have gone through so much just to live and now their chance is ahead of them. The gift on an entire lifetime to create meaning and purpose and change. One time my dad said Will is like the spark. One day, years from now, someone will hear about the Will King Foundation and all the children who have been impacted and affected. It won’t be about us, it won’t even be about Will, it will be about the way it changed the life of another. They will wonder, “Who is Will King?” and discover that he is the inspiration. As we continue to move forward we will keep pointing to Christ and be proud of all that He is doing through Will’s life and death to change the world.
The tiniest spark can inspire world change in the hands of God.
This has been the most difficult post I have published. Before you read it I want you to know that there is sensitive and controversial information about medical support. This is my personal opinion based on my experience with my son, I am in no way commenting on anyone else's decisions regarding medical support. I respect and admire anyone having to make "end of life" decisions for their child or loved one because I know the weight of it is more than anyone should have to bear.
There were multiple times during Will’s life that we were asked whether we wanted to continue supporting him or not. As I have said before, Will was dependent on medicine and technology to live and the question was when is it too much? Where is the line? How can you decided if there even is a line when it comes to your child? Anything and everything - that’s all I wanted them to do to save my baby. I’ve never had to make decisions like this before, so I don’t really know and maybe I’m totally wrong, but seems like the line might be more clear with someone older or someone who can make these decisions for themselves. Someone who has lived a long, amazing, meaningful, productive life and makes a decision to not continue taking medications or to stop ventilator support. I’m not saying it’s at all easy for that person or their loved ones, all I’m saying is that a child just seems different. My own child is different. He hasn’t had a chance at a long, meaningful life. We wanted to give Will the best chance possible and taking away his support felt like taking away his chance, especially when he kept living after so many people told us he wouldn’t.
The first time we had this conversation was after Will came off ECMO, December 13. The attending doctor told us that Will was in a “vegetative state” and suggested that we remove the support and just hold him until he passed. I didn’t have much to give, but something came from deep inside that told me to fight for my son. We talked to a lot of specialist that day and there were so many conflicting opinions. We hung onto two, the two we trusted the most, the two who were fighting for Will with us and willing to give him a chance - they were honest, but optimistic. The cardiologist said that while Will’s heart was weak, he still had hope that it could recover. The neurologist said that his brain stem was completely in tact and he was by no means in a “vegetative state” which opposed what we had heard earlier that morning (don’t get me started on the irresponsible comments from doctors). How could we not keep going?
On December 24, another doctor came in to talk to me about Will. She explained the condition of his heart and the effect that kidney dysfunction was having on his entire body. She also mentioned his brain bleed and how we don’t know what his neurological status would be in the future. It was the second time that someone asked us if we wanted to take away Will’s medical support and let him die. She said, “Will will not recover” definitively and expressed that while it was reasonable to give him more time, she did not think he was going to get better.
Sometimes it felt like it was less about whether Will could live or not but more about what his neurological status would be if he did. Like his life was worth less because he might not be a "normally developing" child. He might be severely disabled, he might never walk or talk or he might have severe epilepsy. Depending on who you talked to, the not so subtle undertone of conversations like this was asking if we would still want him if he had a disability or severe special needs. Of course we would. We wanted him no matter what. No one could say with any certainty what he would be like in the future and taking care of a child with special needs didn't scare me. All of January and February he was responsive, looking around and acting like a typical 1-2 month old. That’s not to say he wasn’t going to have any issues down the road, but it’s not to say he was either. We learned that baby’s brains are different than adults because they aren't fully developed and there was a chance he could have a full or almost full neurological recovery. Nurses told us that if they didn't know about his brain bleed they would assume he didn't have any neurological issues because he was acting so appropriately. There was a chance he could have some type of learning disability or ADD or a developmental delay. There was a chance for autism or cerebral palsy or a number of things that would classify him as “special needs.” No one knew, no one could ever predict what would happen, but there was that chance that he would be severely damaged, so would we still want him if that was the case or do we want out now before it’s too late?
We had this conversation with multiple different doctors and nurses throughout his time in the hospital. Before Will got a trach and every time his blood pressure was low we had this conversation again and again. Everyone we had this conversation with is human, which means every one of them has their own opinion, experience and viewpoint. Some were more callused and harsh than others, but ultimately we had to take in everything we were hearing and make our own decisions. The most helpful advice we received was from one of Will’s nurses and one of the wisest people I have ever met. She had a lot of experience, nursing and personal, and during one conversation with my mom she said, “there are things worse than death.” She said it as a passing comment, not meaning to be particularly profound, but my mom told me about it later because it had made an impact on her and she thought it might be helpful to me. I listened and agreed, but really didn’t think much more about it after our conversation.
In early March, some of Will’s last days, her words came back to me and rang so true. We live in a culture that is scared of death and often tries to prevent it or prolong it with medicine and technology. Death is scary if you don’t know what happens after you die. If your salvation in Christ isn’t secure, then death is uncertain and finite and scary. But if you have hope in Christ, if you believe that the wages of sin is death but the gift of God is eternal life, then death is not scary or finite and it’s definitely not the worst thing that could happen to you. I know that is offensive to some people, I know it’s not “politically correct” to talk about faith in that way but I believe the Bible is true and that’s what the Bible says. So yes, there are things worse than death, but life is still valuable and fragile and wanted. Will’s life was desperately wanted. There is nothing more I wanted then or now than to give him life here on Earth. I would have done anything. Removing medical support wasn’t a decision that could be made flippantly or out of fear and that’s why those conversations always ended with continuing what we were doing, prayerfully expecting that he would get better in time. After these conversations I would just pray that if God wanted Will He would just take him, I pleaded to not have to make a decision about his support. Every time we were confronted with this conversation, there was still the question of where is the line. When is enough enough? How do we know that if we didn’t try just one more thing that he would be saved? How did we know that if we didn’t just give him more time he could recover? How could we make a decision to take away his support and regret it for the rest of our lives, always wondering “what if…?” Each time we had this conversation it always ended with the decision to keep giving Will a chance. How could we let him go? It didn’t seem right. We had to fight to get him and we were going to fight to keep him.
On Christmas Day, Taylor texted this to me, “God has every day of their lives already recorded and He is not surprised by any of this.” That was another truth we had to hold onto, that despite all of the equipment, machines and medicine, God was and always will be in the One in control. It doesn’t mean that we can’t make decisions or think for ourselves, but God always knows what is going to happen before it happens. Psalm 139 says that every one of our days are already written. God knew Will’s first day and his last and every one in between. In the midst of such deep sorrow and inner conflict, this was comforting when we were being asked if we wanted to keep supporting him. We knew that if we had decided to withdraw support at any point, God could have intervened and kept Will alive. As we choose to continue support, Will still could have passed away even with all that help.
I’ve mentioned before a conversation I had with one of Will’s doctors who told me that we would know if Will’s time on Earth was coming to an end. I believed her, but I didn’t know how we would know and I hoped I would never find out. I prayed over and over that if God wanted Will that He would just take him. I prayed that we wouldn’t have to decide to remove his support or not try another procedure or not give him another chance. I didn’t think I could live with the uncertainty, constantly wondering what would have happened if we continued instead of stopping. I’m sure it was her experience that led her to say that to me because on March 6, I knew. Will had been having constant seizures for almost four days. They were coming from all over his brain and could not be stopped even with multiple, potent anti-seizure medications. His heart was getting weaker and he was having support added instead of taken away. As all this was happening I started to feel in my gut that this was it, this was his time. Of course I ignored it, he had survived so many times before and I wanted to believe this was just another bump in the road, another miraculous recovery. I wanted to believe that he would pull through. It might sound weird because even when I think about it today I have a hard time understanding it, but on March 6, I walked into Will’s room and I had an undeniable, overwhelming sense that Will was already gone. Yes, he was still breathing (with the help of a trach/ ventilator), his heart was still beating (because of an epinephrin drip and multiple other heart medications), but I looked at his sweet little face and I knew that he wasn’t there. God was gracious and it wasn’t really a decision because it was already happening. His body was shutting down even with all the rescue medications and machines and support being added. And the words that were spoken to me in December, the words that I didn’t understand, the words that were confusing and intimidating, they all the sudden were perfectly clear. You will know. And I knew.
This is one of the last videos I have of Will, taken on February 27. I love how he is peacefully dreaming and I loved when he did that nursing motion with his lips. The sound he makes when he is breathing is normal because of the trach, his breathing is not labored, it's just how he sounded based on his position or if there was a small leak around the trach. We liked to use his stuffed animals to position his arms and legs and snuggle up next to him so he felt comfortable and secure and the lullabies playing are from his nurse, Misty. He is swollen because his kidneys were still not functioning and the dialysis was not working as well as it had been to remove excess fluid. This was one of the last times I remember him sleeping peacefully before he began to decline. When I watch videos of him sleeping I just can't help but remember how incredibly sweet he was and wish so badly that I could peak in at him sleeping in his crib tonight.
Two days after Will passed Taylor and I had to go to the funeral home to make final plans for our baby. It was agonizing. Taylor and I took Caroline with us and pulled into a cemetery near our home. Sitting in the passenger seat I looked around at all the headstones. Lots of years between each dash. Not for my baby. It didn’t seemed fair. Right before we got to the funeral home we drove past the section reserved for children. I could tell because it was littered with stuffed animals and baby blankets and little angel statues. All I could think was that I couldn’t leave my baby there. We got out and walked in to meet a nice lady who sat down at a conference table with us. She had a folder with pricing and options and we were supposed to make decisions and sign a death certificate. We had just gotten his birth certificate and now we were supposed to sign a death certificate. I just sobbed as Taylor tried to talk to her and read my body language as we answered her questions. She thought he was a stillborn at first, then noticed the 96 days of life he had here on Earth and apologized. She tried to be sympathetic, she said she understood because her daughter was in the hospital some when she was younger. I just nodded, she didn’t understand but what are you supposed to say to us? There is nothing to say.
“Do you want to see him?” she asked, tilting her head sympathetically. Before we arrived I told Taylor I didn’t want to see him. I said it out loud because I wanted him to hold me accountable to that decision. I knew that I wanted to remember him alive, plus I had already seen him with no breath inside him and it was terrible. I also knew that when we got there, when we were so close to him, I might want to change my mind and end up regretting it. When she asked part of me wanted to scream, “YES, give me my baby!” Part of me wanted to check to make sure he still wasn’t breathing, maybe the doctor was wrong, maybe he still had a heartbeat. Part of me wanted to hug and and kiss him one more time. Part of me wanted to touch him and wrap him up in his blanket and just hold him. A bigger part knew that I shouldn’t, I couldn’t allow myself to see him again. I said goodbye when he was safe in my arms. I kissed him for the last time and laid him down in this tiny basket and wrapped him in his blanket and told him I loved him. He wasn’t here anymore and if I walked in to see him one more time I would see a shell of the body he once lived in. He was not his body, his soul was with Jesus. “No,” Taylor replied as I shook my head and cried. She brought me the outfit and blanket we had dressed and wrapped him in and handed it to me in a neatly folded stack. I held it the whole way home, it felt like all I had left of him.
We choose to cremate Will and place his ashes in a ceramic jar. It sounds silly but I just couldn’t put my baby in the ground, I wanted him “with me.” I know there are some pastors that I respect and some smart Bible theology people that disagree with this decision, but it's where my heart was, wanting my baby with me, in my home and with his family. The thought of burying him was traumatic but at the same time I couldn’t stand the thought of his little body being sent to the crematorium. No one could understand how precious he was. But I kept telling myself that he is not that little body. The truth that he was in heaven and not in that body anymore is the only thing that helped me go through with it. One of the next decisions we had to make was which urn to choose for him. I searched for baby urns online and as I typed it in I thought about the word urn and how it’s not a word that should be used in the same sentence as “baby.” I found one that was handmade, ceramic, simple. There is a verse in the Bible, 2 Corinthians 4:7, that says, “But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us.” God brought this verse to both my and Taylor’s mind separately and when I showed him we both agreed that it was what we wanted for Will. He is a treasure. On the front we have his name printed, “Will King Hughes,” and the back says part of Romans 12:2, “God’s good, perfect and pleasing Will.” We claimed that verse many times over our son and we think it describes him in our eyes and God’s - good, perfect and pleasing.
Taylor went to pick up his ashes a few weeks later. It was just the smallest little bag and the urn hadn’t come yet, so I put the bag in my bedside table. It just felt so wrong but there is no right when it comes to the death of a child. I wanted to get a shelf to hang up in our home and put some of Will’s things on, including his urn, but I procrastinated on it for a bit and the ashes stayed there in my beside table for a few weeks. All I could think about was how he was supposed to be sleeping by my bed in a bassinet, how this was wrong in so many ways. This little shelf would possibly, probably, be the last thing I would ever buy for Will and I didn’t want it to be over. I finally ordered the shelf and Taylor hung it in a corner in our room when I was out of town. I came home to this empty shelf that I was supposed to decorate with Will’s things. I wanted it to be filled with meaningful objects so that every time we looked at it we were reminded of his joy, his perseverance, his sweet spirit.
I tried to make it meaningful, include things that remind us of him, things that we can tell his brother and sisters about one day. His urn, filled with his ashes, our treasured son laid to rest in a jar of clay. The "first tooth" and "first curl" boxes I had bought for him, nothing will ever be in them, but it still didn't seem right to get rid of them or hide them away somewhere. They were in his stocking. A picture of him, which I see every time I walk into my room. I couldn’t decide which picture to choose. Part of me wanted to put a newborn picture from his first day of life. No cords, no equipment and not sick. Instead I decided to choose this picture of him in the hospital when he was a few months old. Yes, he has tubes in his nose and tape on his face, but his little eyes. I just love the way he is looking up with his little eyes and the kind, sweet expression on his face. That was Will. On the top shelf I have his little dog stuffed animal, something he held and had in his bed. I have a box with the outfit we put him in after he passed away. Noah’s arc hat, blue socks and blue bunny sleeper. It has his name engraved on the window. I thought about the person filling my order. They probably saw “Will King” engraved on the box and thought it was maybe a baby shower gift, or something a new mom just ordered to display some newborn clothes in that her baby recently grew out of. One of his books, “On the Night You Were Born,” that we read to him. And a special wooden box given to me by a friend after his passing. My friend got this box on a trip out of the country and it has a small angel inside it. Inscribed on the box in German is “Good luck, angel.” It was such a thoughtful gift and it reminds me of all the support, love and prayers we had from so many friends. And Will was a little angel.
Shelves in my children's’ rooms are filled with pictures of them, painted ceramic artwork, their favorite stuffed animal when they were a baby, their first Mickey Ears. I reorganize the shelves as they get older, I add new art work or switch out a picture to a more current one. Will’s shelf is so finite. As I organized it I probably shifted around the objects dozens of times. I knew exactly how they would look the best, how they would fit well on the self, but I didn’t want it to be over. Decorating that self was something I could do for Will, and I knew it might be one of the last things I do for him. I am reminded of how I felt decorating that shelf often. I so badly wanted to be able to do more for him. I want to help him get dressed and put shoes on and brush his teeth. So many times when I get exhausted with one more person who needs something from me, or when all three children need me at the same time, I think about that shelf and my perspective immediately shifts. It’s an honor, a joy, to be able to do things for my children, even if it’s something they are able to do themselves. One day it’ll be the last time I pour them a cup of milk, the last time I help them tie their shoes or comb their hair. How I wish I could help Will do all those things, how I wish I could help him, teach him, bring him something, anything. I’m not advocating for being your child’s servant, I know that it’s my job to teach them responsibility and independence, but sometimes when I think about that shelf I just want to do everything for my Will, and since I can’t, I want to appreciate the gift of helping his brother and sisters. Will is a treasure and so are they, and what a gift that they are here with me, three people who I get to reorganize shelves for for years to come.
Making all those final decisions for Will seems kind of blurry now. Almost like I was inside some else’s body because how could this be my life? This is the kind of stuff you read about on some blog, written by someone you don’t know, and sympathize because you can’t imagine if that were you. It’s something no one expects and no one deserves. Googling “baby urn” and paying a cremation bill and writing a message about your son’s passing to send to family and friends is all just so unexpected. I have questioned some of those choices since then - did we pick the right urn? Is it okay that we choose to cremate him? Should we have given him a marker somewhere? Did we honor him well? Did we do it right? But I don’t think there is really a “right.” There is no manual for how to do this, how to lose a baby. We made decisions that we thought would best honor Will and continue to make him a part of our family and our home. I am always thinking each time I do something “for Will” it might be the last time, but it seems like there is always something else to do for him, in his memory or his honor and I hope there always will be. I feel like the best I can do is give him a legacy, help him be remembered by others, his name not be forgotten. His life, although much too short, mattered. He made more of an impact in 96 days than most of us will make with an entire lifetime. I thought of this idea of “96 days, 96 ways” (details below) after we returned from the funeral home that day. I didn't really know what to do with it or how to even make it happen. After a few months of it floating around in my head, I decided that it would be the perfect way to remember his time on Earth. I am looking forward to celebrating him each of of those days, and every day, until we meet again.
"But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us." ~2 Corinthians 4:7
In a few short months we will celebrate the one year anniversary of Will’s 96 days on Earth, December 1 - March 6. I know every one of those days will be filled with a lot of emotions, grief and joy as we remember a year ago when we had Will here with us. To honor Will’s 96 days on Earth, I would like to post 96 ways he has impacted others, one on each day he was alive. Whether you knew Will personally, are a friend of our family or don’t know us at all, if Will or his story has impacted you in any way, we would love to hear! Here is how to be included in 96 Days, 96 Ways:
1. Write they way(s) in which you have been impacted by Will. It can be one sentence, a story, letter or just a few thoughts. Nothing fancy or eloquent, just simply what our little boy and his story has meant to you, how it has changed you or encouraged you.
2. Email to email@example.com (please specify if you would like to be kept anonymous)
3. Look for your story during one of the 96 days and share with the hashtag #96days96ways
Thank you for you participation in helping us remember Will during this difficult first anniversary of his life and death. We are praying that as we share the ways Will has impacted the lives of others that God would be glorified and others would be pointed to Him.
After Will passed, there were a lot of things that I expected. I expected to experience crippling grief. I expected to tear up or start all out sobbing at random times. I expected to miss him and wish he were here. I expected to have awkward conversations and have to help people who don’t know what to say feel at ease. I expected to be angry at times, to question why God didn’t just heal my son when I know He had the power to. I expected to get looks of pity and be avoided. I expected that I would never be the same because part of me died with Will. There are three things I didn’t expect - the fear, the thoughts and the happiness.
First the fear. Before our babies went to the hospital and we were faced with the reality of loosing them I had never really experienced true fear. I was a pretty fearless child and young adult. As a child I remember walking up the stairs in the dark before my brother in case there was a spider or "boogie man." My mom said I was never scared on rides like The Haunted Mansion or the Dinosaur ride at Disney World and in fact they tried to scare me but couldn't. I would pretty much try anything too. I went horseback riding, wake boarding and snowboarding, snorkeling and whitewater kayaking and running down every trail I could find. I was a diver and have done thousands of flips and twists off a three meter spring board. I drove too fast (and have lots of speeding tickets to prove it) and I was always willing to jump off the cliff or take the road less travelled (literally and figuratively). I never really experienced fear until I had a child. Then I got really cautious really fast. I was scared my baby would stop breathing in his sleep or get sick if I took him to the store or pinch his finger in the high chair tray. I feared that my child would fall on the playground and skin his knee or tumble down the slide. When they were learning to walk I was scared they would fall and hit their head. My oldest daughter has breath-holding spells and the first time she did that I was completely terrified. Sometimes I would read about secondary drowning or a child who unexpectedly was diagnosed with a terminal illness or a tragic accident that could have been avoided if only the child was buckled into their carseat correctly. We all have fears as parents but all those things that I read about, the real fear of losing a child, seemed like something that only happens to other people. I would sometimes put myself in their shoes and I was constantly playing out “what if this happened to my child” in my head but I never actually thought any of those scenarios would happen to my family. It’s just too much to grasp especially when your children are healthy and safe. I’m also not really an extreme worrier, but I am cautious and diligent about looking for ways to prevent accidents. I still cut my five year old’s grapes in half because I’m scared he will choke and I have a bottle of hand sanitizer around every corner but I never really thought one of my children would die, it just was unfathomable.
Now that it’s happened, I have a whole new outlook. The worst fear of any parent, losing a beloved and cherished child, has happened to us. There is literally nothing in this world that could happen to me that would be any worse. I shouldn’t be scared of anything - I have experienced the absolute worst fear I have ever had and ever will have. But I am scared. I am scared it could happen again. It doesn’t seem unfathomable anymore because it happened, I know what it feels like. So now my caution and diligence has been turned up to full anxiety mode. I am thinking not just about how to prevent the accident but about every worst case scenario, determined that we will not lose another one. Eating, swimming, sleeping, driving, bike riding and even simply playing have all become potentially catastrophic events that could lead to death. I promise that I can tell you how any activity could lead to the loss of my child - even if it sounds totally insane it seems like it could really happen in my mind. A virus took the life of my child and not some rare, intense virus, but one that nearly everyone gets in their lifetime. Life is fragile.
The side effect of fear is that it sucks all the joy out of any situation. I have to work hard to find a healthy balance. I have to be able to enjoy taking my children to the pool without letting the anxiety of them drowning take over. My children have to eat and I can’t throw every meal into a blender to prevent them from choking. I watch them, I cut their food into appropriate sized bites and try not to panic when my two year old shovels a whole bowl of food into her mouth. I have a hard time with things that might seem small - letting my child play at a friend’s house, dropping my son off at school, riding bikes in our street and even grocery shopping because everything could turn into a tragedy. I work hard to not let the fear take over because it's not fair to my children and not healthy for me.
Something else I didn’t expect was that I find myself thinking some crazy thoughts, mostly making space for Will in our lives. Thinking to myself where he would be if he were here this very moment. Maybe we are going to the pool and I’ll think to myself what I would do if Will were here, what order I would put his sunscreen on in relation to his siblings and where he would sit while we ate lunch and how I would hold him in the sling when Caroline was in the float and let them take turns. Or I’ll be feeding Caroline and imagine if his high chair were next to her and how I would feed them alternating bites (two spoons, of course). Or sometimes Caroline will be upset because she is tired or needs a diaper change or is hungry and I will plan in my head how I would handle it if Will was also upset. How I would comfort both or feed both or change both or get them both down for a nap. How I would load four children into the car instead of three, how I would bathe four (boys together then girls together perhaps?), how I would take the twins to their doctor’s appointments or where they would sit when we watched their siblings play outside. When I catch myself thinking Iike this I first feel so sad that he isn’t here, even if I’m making room for him in a chaotic moment, I wish so badly he was here to make it even more chaotic - I know that sounds crazy but it’s true. Then I think about how if a psychiatrist knew what was going on in my head they would probably diagnosis me with something because of how insane it is to plan for someone who will never be here. I’m not even sure why I do it. Maybe it’s because I had been thinking about how I would coordinate our days with twins for months before they were born. Maybe it’s because I was so excited to have both babies together, to see their relationship grow as they grew that I just still think of Caroline as a “they” instead of a “she.” Maybe it’s just to take the pain of him not being here away for a tiny moment and imagine our life as it is supposed to be.
The third thing I didn’t expect is to be happy, especially not so soon. I will never be the same, I will never be fully whole because part of me is gone. But I have an amazing family, wonderful children and I have had so many joyful days and happy moments even though Will hasn’t been a part of them. I have been listening to Kenny Chesney’s new album, “Songs for the Saints,” since it came out last week and there is one song that he sings with Jimmy Buffet and I alway think about how it perfectly describes grief. It says, “And now I must confess/ I could use some rest/ I can't run at this pace very long/ Yes, it's quite insane/ I think it hurts my brain/ But it cleans me out and then I can go on.” I can only grieve, grieve hard, for so long. I can’t constantly be sad, crying and weeping for my baby boy. Times where I tear up or get that sad pit in my stomach because I drive by the hospital or wish I could hold him the way I hold Caroline, those little moments happen multiple times a day, but they pass and don't take much out of me. But then there are times where I am just uncontrollably sobbing, wanting with every part of me to have my baby, that’s what I can’t do constantly - I can't run that pace for very long. But if I have those times of extreme sadness then I can move forward, be happy and go on until the next one hits. I know I should probably be finding comfort in something other than a Kenny Chesney song and I know the song isn’t even about grief, but I connected it to the way grief seems to come in and out. It’s always there a little bit, I think it always will be but it’s those times of letting myself fully feel sadness that allow me to go on and experience joy, contentment and happiness. I'm sure there will be more of the unexpected as we move further from Will’s last day on Earth, but for now I am thankful for these things that I didn’t see coming. I am thankful that with increased fear comes increased gratitude. I am thankful that even though Will is not here I can still include him in our days by simply thinking about him. And I am thankful that I can be happy, enjoy my family and experience joy in all the things that God intended to be joyful.
I didn't really expect to experience true happiness, especially not this soon after Will's passing. Part of me even felt guilty the first time I was happy because what kind of mother could be happy when one of her children was gone? However this summer brought a lot of unexpected joy, which, obviously, is good, as I played with my children and watched them create memories together. That's not to say there hasn't been a lot of sadness and a lot of tears and a lot of missing Will, but there has been a lot of happiness, a lot of contentment and a lot of joy as well.
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!