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.
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!