Building Will's legacy through this foundation has been filled with a lot of joy. After experiencing the pain, loss and complete devastation of Will's passing, this has been a light. It has been a blessing to see our children meet children from other parts of the world, learn about their culture and play with them. Showing compassion to the sick, helping the brokenhearted, praying for the weak - all things Jesus calls us to do - all a blessing and joy to do. Honestly, I guess selfishly, I would give it all away if I could have Will back. I sometimes feel a big mix of emotions, I love what has been created in Will's memory but we wouldn't be doing this if Will was still here. The foundation wouldn't exist, we wouldn't have met these children and their families but we would have our little boy. If it were up to me, I would choose to have Will back over and over again. Obviously, it's not a choice, but what is a choice is what we do in response to losing Will and I love how he is being remembered, the impact he is making. Those days and weeks after he passed were a blur, we didn't know what to do or say or how to act but I am glad God put this on our hearts. It's meaningful and each one of these families is special to us. I will always make sure he is remembered and I am determined to leave a legacy for him. A legacy that glorifies God and helps others.
My family got to spend some time with Paula and her parents this weekend and it was wonderful. My husband had met them when Paula was still in the hospital but my children and I hadn't yet. Last week Paula was discharged from the hospital after her heart procedures and she is staying in Jacksonville for a few more weeks for monitoring. When they walked outside Paula was asleep in her mother's arms and I noticed her black t-shirt, the Will King Foundation t-shirt that was in the basket Taylor took to her. I was filled with pride when I saw her in that shirt, his name right on the front, the one who was bringing so much joy, the one who was helping another sick child, the one who was bringing together our families who would have otherwise never met. It's all Will. He is the light. It's like when you light a match, the small flame quickly turns into a big light, one that can light up a whole birthday cake, one that can make a candle burn bright in a dark room, one that can set off a firework that lights up the sky. Will is the small flame on the end of the match, everything that happens through his foundation - every family helped, every heart changed, every bond made - it all started with him. He is the spark. It makes me so proud of my sweet little guy, there was something so special about him that he inspired all this. Paula and her mother speak Spanish and thankfully her dad speaks English because we could barely remember any Spanish from our high school days! I just can't imagine being Paula's mom. It's the hardest thing in the world to live in the hospital with your child. Your baby is sick, you are waiting while they get operated on and listening to doctors and watching monitors. I was overwhelmed by it all but then to be in a totally different country and not be able to communicate well with your child's doctors and nurses has to take the feeling of being overwhelmed up a few notches. And then sweet Paula. I kept thinking about Will's big sister Emma Grace because she is two just like Paula. I thought about how scared she would be in another country, in a hospital and going through all that Paula went through. I thought about how confused she would be if doctors and nurses were speaking to her in another language. I thought about trying to keep her quiet and calm in a hospital bed while she recovered. I thought about not being able to take her outside and seeing her hooked up to monitors and medications and machines. All the unknowns and new people and restrictions. She had unbelievable strength and courage wrapped up in such a little person. We started walking to a nearby playground, but with dark clouds looming in the sky we decided to stay closer and stopped at a little park on the river. Will's big brother brought a toy piano for Paula to play with. He got it for his first birthday and it has been a favorite of his and his sister. He brought it because there is a Spanish setting and when I told him that Paula spoke Spanish he thought she might like it. This is the type of thoughtfulness and compassion I am thankful to see developing in my children. He set the piano up on a park bench and Paula loved it. Her dad told us that she loves music and animals. She was so smart too. She could say all the colors and numbers on the piano and her and Emma Grace even had a little dance party. The children played a little bit before we ran back in the rain where they spent some more time playing under the covered parking area. It was pretty amazing that they had the one piano and some rocks that lined the sidewalk and were able to play happily with each other. I kept thinking about how we have so much stuff and we really just need each other, it brings the most contentment and all the other stuff seems to get in the way. We really enjoyed learning about Paula and her family - what her life is like in Venezuela and how her medical needs have affected her and her family. She is a bright, sweet and very loved little girl. Although I wasn't able to directly communicate with her mom very much, I could just feel how much she loved Paula, her dad too. She was so playful with our children as well, she played with Emma Grace and tickled Caroline. It was really sweet and amazing to connect with someone that you can barely talk to. Paula has one more surgery in her future, her dad said probably as a teenager, but otherwise should return to Venezuela in a few weeks where she is expected to grow stronger and be healthy. I am honored that she is included in Will's legacy, grateful that we got to spend time with her family and thankful that she is doing well. Sweet baby Will, this is all because of you, you are an amazing little guy and God is being glorified through you here on Earth.
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Since Will’s passing, it seems like we have joined two clubs, neither of which you ever want to be a part of. One is a group of parents who have lost children. I sometimes feel like a magnet to these people. It is the most unwanted type of blessing. It happens like this - I meet someone for the first time - a wonderful, kind, lifetime friend type of person - and I wish I never knew them. The reason we met, our common bond, is that we both lost a child. Never meeting means never loosing. Outside of our loss, we would have no reason to reach out or connect. Maybe we would have met at the playground or through a mutual friend or maybe we never would have met at all. That’s the unwanted part, the thing that draws us together is the one thing we wish never happened. Usually a blessing is something you desire, maybe even pray for, it’s something you want. These new friends are ones I don’t want because of the circumstances around which we met, but they are some of the greatest blessings. It might sounds offensive to say it like that, but if you are one of these parents, I know you understand that it’s not offensive, it’s just true. My husband and my parents have been the main people I go to. They understand. But these moms I have met who have lost their babies like me, I connect to them differently. They understand too. We both carried our child and felt them kicking - living - inside us. We both loved them unconditionally before even laying our eyes on them. As time goes on, maybe people forget, or even if they don’t forget life starts to get back to normal and no one talks about your baby anymore. Not these moms. They know that no matter how long it’s been I still think about my baby every day because they do too. They know that all I want is to just hold my little boy, I want to play with him and comfort him and watch him grow up because they feel the same way about their child. We share the same fears, anxieties and are stuck in this place of not knowing together. Not knowing what to do with our baby’s clothes and toys and books. Not knowing how to answer their siblings’ questions. Not knowing how to remember them as the days pass and we start to forget - how it felt to hold them and how their eyes looked as they started up at us. Not knowing what to say when our child blurts out to a stranger, “My brother died.” Not knowing if we will ever really feel ourselves again, if the numbness will ever wear off, because after all a piece of us is gone forever. Honestly, it is hard to meet these mothers. It is heartbreaking to hear their stories and watch their tears fall onto empty arms. But I need them. However heard it is it is worth it because I couldn’t do it without them. These are the strongest women, the bravest ones and they show me what it means to live in a world that is not supposed to be. Then there is the second group that we are suddenly a part of. The group of parents who have a child in the hospital or a child who has been given a diagnosis that is more like a death sentence. These parents, like us, are usually thrown into this club unexpectedly and are dazed when they find themselves facing the possibility of loosing their child. No one expects the diagnosis or the pre-term brith or the near-death experience. These parents come to us because we have been there with two of our children. Let me just say this - please keep coming to us. Before you read about the hard parts of talking with these parents, before you second guess yourself or wonder if you should give my number to your friend whose baby is in the NICU - just believe me when I say please do. We have been through any parents’ worst nightmare and I know that when you are whipped into this situation it is daunting, scary, frustrating and heartbreaking. You cannot walk through it alone and just because it can be hard sometimes doesn’t mean I don’t want to help someone else through it. What’s hard about it is wondering why God heals some and not others. I always believed and still do believe that God COULD have healed Will, He had the ability to do it anytime. Why He didn’t I will never know or understand. That’s hard for me. I think it always will be hard. Since Will’s passing I have heard story after story, miracle after miracle of God healing babies. I pray and I listen and I offer anything I think might give a moment of comfort or confidence. In no way do I wish these miracles wouldn’t happen, I am desperate for them. I don’t want any parent to lose what I have lost. I don’t want any child to suffer. But I also sometimes wonder why them and not Will? I’m sure some people would say the same about Caroline. Why did God heal Caroline and He didn’t heal my little girl? I don’t know. Maybe there is some theological explanation that someone a lot smarter than me could explain. But I simply don’t understand why some babies are healed and some are not. I don’t think I’ll ever know why I had one who was saved and one who was not. Maybe I don’t need to know, but I still wonder. If you are a parent who fits into one of these groups, I just want to say that we need each other. Don’t feel embarrassed or hesitant or reluctant to reach out. If you have lost a child, I would love to meet you. If you have a child in the ICU or a child who has receive a diagnosis from a doctor who says they will not live or a child who is in an unknown medical situation, I understand. Everyone likes to say, “I understand how you feel,” but really only people who have been through it can tell you that they truly understand and I understand in a way that I wish I didn’t. I wish I could have lived my entire life with a naive misunderstanding. I wish I could say that I have never set foot in a Pediatric ICU and I don’t know the feeling of uncertainty as I watch my child continue to live when I am being told he will die any day. I wish I didn’t know the pain of holding my baby as he took his last breath or the agony of planning his future at a funeral home instead of planning his first birthday party. Will will always be a part of me and I will never stop missing him, never stop wanting him back. I know that his life brought joy and glorified God and I am determined that through his death there will be joy and God will be glorified. The joy is brought through new friendships, through helping others and through sharing his story. Without seeing the joy, without giving thanks for Will and looking for ways to help others I would slip into a miserable and sad existence. I am miserable and sad sometimes, but a life marked by ingratitude and bitterness is not what I want - it’s not what I want for my children, my family or myself. Paul writes that we should rejoice with those who rejoice and mourn with those who mourn (Romans 12:15). Seems simple, so I’m not going to overcomplicate it, I’m just going to do that. If I meet someone with a miracle child, like Caroline, someone with a baby who has survived the NICU or the grave diagnosis or recovered when everyone said they wouldn’t, I will rejoice with you. Not begrudgingly, but I promise to whole-heartedly rejoice because God has chosen to shown Himself through your child, a miracle. If you have a child in the hospital, a sick child or if you have lost a child, I will mourn with you. I will be sad with you, I will cry with you and pray for you and with you. Regardless of how I know you or how we met, God calls us into community and anyone in these two “clubs” is a part of mine. God promises to turn sorrow into joy, I'm going to claim that, joy will come out of this loss. In John 16, Jesus is talking to his disciples about how they will grieve when He dies on the cross, how they will mourn when many are rejoicing (FYI - a lot of people didn't like Jesus). Jesus uses the example of a woman giving birth, her pain turns into joy as she goes through labor and then welcomes her child into the world. He tells the disciples that when he dies, it will be their time of grief, but then He gives them hope. Jesus promises that they will see Him again, He will conquer death and that sorrow will turn into great rejoicing. My joy may not be complete until I see Jesus in heaven, but I am claiming this same promise - my sorrow will turn into joy because He promises it will.
A few videos of Will in February 2018. These song lyrics remind me so much of Will, he ran with perseverance and didn't quite until God carried his soul away. Take away all the tubes, monitors and devices and he is just a funny, sweet little baby :) December 2017 seemed like the longest month of our lives, but January and February had a way of flying by. Early February was all about balance and waiting. Will’s heart function had started to backslide and the cardiologist seemed puzzled as to why. The reason that made most sense was fluid overload. Since Will was on dialysis 24 hours a day, there were times that he would have a positive fluid balance for the day and other times he would have a negative balance. When he was “positive” it meant that he had retained fluid over a 24-hour period, anywhere from a few milliliters to a few hundred milliliters. Extra fluid puts more pressure on the heart and lungs, making it harder for them to function, explaining the backslide. The specialists worked hard to balance how much fluid Will was taking in and putting out each day, trying their hardest to keep him balanced and even. February 1st arrived with some good news after Will had an MRI. His brain bleed from being on ECMO was receding, not spreading or getting worse. It didn’t give any answers as to how the bleed would ultimately affect him neurologically but we didn’t have to worry that the bleed was going to affect more of his brain than it already had. As far as clinically, Will was acting and responding very appropriately for his age. He was physically behind because he didn’t have as much mobility with all the monitors and devices attached to him, but in so many ways he acting just like a normally developing infant. He was making a lot of improvements every week during his therapy sessions. He was moving all of his limbs equally, made eye contact and tracked objects. I got him a play gym and he seemed to like laying under it to look at all the patterns and toys. He also had a bouncy seat and a pillow that he sat up in as well as his physical therapy chair. Many nurses commented that if they didn’t know about his brain bleed they wouldn’t think he had any type of neurological issues. It all seemed very positive. Unfortunately every positive had a negative (or a few negatives) that came along with it. On February 8, the cardiologist told us that they found a blood clot in the vessel going into Will’s heart during a routine echo. This most likely formed and broke off of the PICC line in his leg and could be potentially life-threatening. Once again, we were, as the saying goes, between a rock and a hard place. To treat the blood clot Will needed to go on a blood thinner, heparin. This would help his blood to flow around the clot so that the clot would not grow and hopefully dissolve on it’s own. Because of his brain bleed, Will was at high risk for bleeding, so going on a blood thinner was not ideal for him. If he could not take the blood thinner, there was a high chance that the clot would grow bigger and block off the vessel or break off and lodge somewhere else - his brain, lungs or heart - and become catastrophic. They did a scan to monitor the brain bleed and decided that since it had stabilized and was not still bleeding it would be beneficial for him to start the heparin. If at any time he started bleeding again in his brain or somewhere else he would have to discontinue the heparin. When the cardiologist first told me that they found a blood clot I didn’t realize how serious of a situation it was. About twenty minutes later during rounds, the attending doctor laid out all the risks and potential outcomes of having a blood clot. He was one of the most sympathetic and honest doctors who had taken care of Will and I could tell he was worried and sad just like me. I held it together through the end of rounds, but right when they moved on to the next room I broke down. I just couldn’t believe something else was happening to my baby. He had already had so many complications, life-threatening situations and procedures and he had been doing so well for the past few weeks. One of the dialysis nurses who we had gotten to know was in his room changing out the dialysis equipment and stopped me to pray. I sobbed through her asking God to heal Will, dissolve his clot and help him recover. There are not many people, especially in the medical community, who we found would stop what they were doing to pray. Everything is so science-based, they look at statistics and worst possible outcomes. Meeting someone who trusted that God could heal when medicine didn’t was a true blessing. Meeting someone who was bold enough to pray out loud in the middle of a hospital was amazing and unique. God put certain people in Will’s life and she was one of the special people who loved Will and asked God to heal him alongside us. Grateful isn’t a powerful enough way to describe how we feel about her and many others - like the attending doctor who gave me a hug on my way out of the hospital that day. So much of the medical staff had grown to love our boy during the past few months. He really was so endearing, so sweet. I was so proud when doctors and nurses came by to check on him even when it wasn’t their shift or he wasn’t their patient. I loved when nurses came to help with his bath or play with him just because they wanted to see him. He was this little two month old baby but he had captured the hearts of so many. He had that special, indescribable quality that just drew people to him. Will had trouble maintaining his blood pressure over the next few days but the clot never ended up causing any issues for him. His PICC line was moved to his arm and over the next few weeks the clot dissolved. Mid-February was fairly stable. Will worked with physical, speech and occupational therapy, we held him a lot and he became more alert every day. We tried to enjoy every single day with him while also planning for his future. He brought so much joy. I love him so much and think about these few weeks in February as some of the best memories with my sweetest baby boy. Photos of Will in February. Every time I look at these photos I am overwhelmed with what a sweet little guy he was. I wonder what he would look like today...
There are few people in the world like Misty. She took care of Caroline and Will during their PICU stay but she was so much more than just their nurse. She was there when Caroline left to go to the hospital floor and Will stayed in the PICU. She was there through procedures and hard days and difficult conversations. She was there when Will smiled and when he had good days. She was there on the day Will took his last breath. She helped me understand conversations I had with doctors after they left, fought for Will and rejoiced in even the smallest victories. She is a wonderful nurse, from her famous bath to the way she organized Will's room and administered medications, she did everything perfectly and with love. But what made her so special were the things she did above and beyond her nursing tasks. She really cared, she answered all of my questions honestly and had genuine compassion. She made Will a CD of Disney lullabies to listen to and checked on him even on days he wasn't her patient. There were many days I know she had a long list of things to do, but instead she sat in Will's room and just talked to me while Will slept. We talked a lot about Will but also just about life. I learned about her family and her faith and I trusted her more than anyone in the PICU. She became part of Will's, part of our, family forever and we will always be grateful for her. Every time I read the letter she wrote to Will {below} I get tears in my eyes because I am overcome with thankfulness for her and I am also so proud of Will for being able to make such an impact on someone's life . Thank you, Misty - we love you! Sweet Will, If I could count the times I’ve thought about you, and your amazing family I could probably create a new number. There are many people that we meet in our lifetime who make lasting impressions, impacts, or imprints on us. Each has a different story, some of our stories continue being edited daily and some are written deep in our heart, and hopefully will never be edited or erased. I always get asked how I am able to do my job, that it must be so hard. But, I think of the special trusting relationships and the loving bonds I build with my patients and their families, and I always answer with, “I can’t imagine doing anything else”. I met you shortly after you and your sister came to the PICU, I still remember hearing your nurse call to me, “Hey Misty, I think he’s having SVT” (that’s a type of really fast heart rate). I walked in and saw your dad standing in the corner, he looked worried, and you did in fact have that fast heart rate. I helped your nurse stabilize your heart rate, and told your dad that we were going to run some tests and that the doctor was going to start some new medications to help your heart. I wasn’t your bedside nurse until you had faced ECMO, and your parents had walked through some of the scariest days of yours and Caroline’s hospital stay. I would watch you from her room as I cared for her, gave her medications, and even washed her once she was stable enough to really get a bath. Once she was able to leave the PICU, I watched as your mom brought her to your bedside to see you, you were still so sick, on the loud ventilator, but fighting like a little warrior. I remember the look on your mom’s face, she was scared to leave you, but was happy that your sister could graduate out of the PICU. My heart hurt for her, I knew that she and your dad would have a difficult time trying to be in two places at once. I loved being your nurse. You kept such a sweet angelic face and even a gentle smile while you endured the medicine, IVs, procedures, dialysis, and extensive nursing care. You were my “why”. Your dad and I would talk about Disney trips, so of course Disney classics and lullabies had to fill the room. I remember giving you my famous bath and putting the blue sleeper on you, and using the star blanket (it was my favorite of yours because I called you my superstar), I may have taken a picture, but I’ll never tell the truth. I was so happy for your family to see you dressed. I loved keeping faith with them, and praying silently while they watched you sleep. And your sweet grandmother, she would read books to you, she was nervous of all of the equipment, but she knew that reading to you and letting you hear her voice was comforting, both for you and her. As your hospital stay lengthened, and you started facing some more challenging days, I had my concerns, and fears. I never let you or your family know my worries. I would pray and hold back tears. You were so special to me. You ARE so special to me. Then the day came that I feared, your family started asking me difficult questions…. You are so loved. You and your family have stayed on my mind since that day. I didn’t want to leave the hospital. I sat in my car for a while before I drove away. Thank you for allowing me to be a part of your care, thank you for that sweet smile, thank you for coming into my life and sharing with me your family of ultimate faith, unwavering love and selfless giving. Will, your strength and fight will be a “why” that I tell future nurses about to encourage them, and remind them that no matter the length of time you know someone, you can have an impact on their life, but more importantly they can have a lasting impact on yours. With love, Misty Will with his blue sleeper and star blanket - little superstar :)
After Will got his trach, he had a few rough days trying to recover. He spiked a fever a few times, had some low blood pressure, high heart rate and high white blood cell count (indicating that his body may be trying to fight off an infection). Everyone was a little panicked but hoped it was just because he was recovering from surgery. Thankfully he was doing better within a few days. He liked looking around at his toys and he was working consistency with physical, speech and occupational therapy. By the end of January he was stable, now it was just about finding a balancing and waiting. Every day it was a challenge to balance his fluids and medications. He had been weaned off a lot of the medications he was on in December. His anti-seizure medication was discontinued because his EEG showed that he was no longer having seizures, so the ones he had were presumably a reaction to the virus. He had a few heart medications and daily electrolyte replacements because of dialysis but there were no major changes or surprises on a day-to-day basis. Sometimes a dosage would be tweaked or his ventilator settings would slightly change but it was really just keeping him stable until we knew what he was going to need. The main concerns were his heart and kidneys. His kidneys still weren’t working after over a month and the longer they didn’t work, the less likely they were to start up on their own. It seemed like his heart had recovered more than anyone thought it would, but it was still weak. It was hard because no one really knew what his future held, we just had to wait and see. The longer his kidneys went without functioning the more we suspected that he would need a kidney transplant in the future. He had to be over 20 pounds to even be considered for a transplant, so there was nothing else we could do besides keep him on dialysis and fight over who would get to give him a kidney. His heart was an unknown and there was still potential that it could get stronger as he grew, especially if he had functioning kidneys. So much was up in the air and it was hard not to think too far into the future. I went there a lot and after asking a million questions and worrying and wondering, I had to pull back, enjoy Will and trust God. One of the skills Will worked on during occupational therapy was tracking and fixing on objects. He spent time under his black, white and read activity gym because those are the colors babies can see best and he could practice those skills. One of his goals for physical therapy was developing head and neck control. The physical therapist would sit him up to work on strengthening those muscles and he loved it! Will in his physical therapy chair. Enjoying Will was easy. He was the most calm, consolable and sweet baby I have ever been around. He loved looking at his toys and being talked to. We read to him, sang to him and played with him. There were many days when we got to help with his bath, diaper change or change trach ties, so we were able to be more hands-on than ever. On January 22, we got to hold him for the first time. On December 6 I carried him into the ER and put him down in this little giraffe bed, that was the last time I had held him. One of the nurses had warned us that he may not like being held. Apparently it’s normal for a lot of children who have been in a hospital bed for an extended period of time without much physical touch to get upset when they are held since they aren't used to it. Not Will. He loved being held and obviously we loved getting to hold him! Sometimes he would just look at us and sometime he would go right to sleep. One time we let him and Caroline FaceTime and she screamed and cried the whole time while he just sweetly looked at her - their personalities were very different. It took a lot of effort and sometimes two people to transport him out of the bed and into our arms. He had so many cords and monitors and lines that it took a lot of organization and maneuvering. It was all worth it and those times of holding Will are some of the best and sweetest memories we have. January 22, the first day we got to hold Will since December 6 when we brought him in to the ER. On January 30, Will finally urinated. The news spread rapidly around the hospital, I don’t know that there had ever been so much excitement about a baby having a wet diaper. Taylor sent me a video of him that night telling me that he went to the bathroom and I just started crying. I thought this was it, this was going to change his course and he was going to get better. I thought if his kidneys would just start working everything else would fall into place. I had every expectation that his kidneys were going to function. The next morning the nephrologist gave him another dose of diuretics to try to keep the momentum going. We waited all day with so much anticipation. Hour after hour we saw that little yellow line on the diaper and our hope slowly dwindled. For days and weeks after that, I prayed for Will to urinate more than I have ever prayed for anything in my life. The answer to that prayer was “no.” The answer to a lot of our prayers were “no.” As a Christian and a mom, I pray for my children more than I pray for anyone or anything else in my life. I pray for all kinds of things, their safety, their futures, their struggles. But the prayer I pray the most, the deepest desire I have for my children is for them to experience a saving faith in Jesus Christ. Before they were even born I have been praying that they would experience the love of God through the Gospel and put their trust in His promise of eternity spent with Him in heaven. I pray that they would believe in the Gospel at an early age and they would give their lives to honoring Christ in whatever they do. My greatest fear as a mom is that my children would spend eternity apart from Christ. I prayed a lot of things for Will that God said “no” to. I prayed for Will’s kidneys to function. No. I asked God to heal him. No. I asked God that he would live. No. I asked God to let me take care of him and raise him. No. I asked God to let him have a long, healthy life. No. I asked God to make him better, help him to fully recover and have no lifelong complications from the virus. No, no, no. Up until Will’s very last breath I prayed that God would miraculously heal him and give him life here on Earth. No. I would be lying if I said I wasn’t completely devastated that God didn’t answer those prayers differently and I don’t think I will ever fully understand why God didn’t do what I know He could have. But God answered “yes” to the most important prayer, the one that I most greatly desire for Will and all of my children. I asked God to allow Will to spend eternity in His presence and God said “yes.” I have the gift of confidence that my little boy is eternally safe in the arms of Christ*. God did give Will life, full, abundant, perfect life in Heaven with Him. Of course I wish he had gone later. I wish that I had gotten to see him grow up. I wish I gotten to hold him more and see his first steps and listen to him learn to talk. I wish I could see him play with his brother and sisters and run on the playground and build forts with pillows and blankets on a rainy day. I will always wish and want for more time with him. But even though a lot of my prayers were answered with a “no”, even though I didn’t get the time I wanted, the most important prayer, the one I desire most, was answered with a “yes”. God is good no matter what. That is the hope that we have in Christ. And even though I miss my little boy here on Earth, there is no better place for him to be than in heaven. We get the gift of knowing exactly where Will is and who he is with for eternity, so while loosing Will is the most painful, tragic and sorrowful Earthly loss, we can take great comfort that it is not an eternal loss. Will wearing my favorite outfit, Noah's Ark. These were the first matching outfits that I bought for Caroline and Will after I found out our twins were a boy and a girl. Will didn't get fully dressed much because it was difficult with all the cords and monitors, but I am glad he got to wear this outfit a few times. *If you are unfamiliar with Christianity, it may be confusing why I know my baby is in heaven. You have probably heard Christians proclaim that faith in Jesus Christ gives us the gift of eternal life with God in heaven. Obviously, babies cannot make a decision or a proclamation of faith, as well as many others who have a certain disabilities or who have never heard the Gospel. One day I plan to write about why I believe that God makes a way for all babies to be in heaven and what the Bible says about it, but if you are curious in the mean time, here is an article that explains it much better than I ever will.
Will’s daddy and I got married seven years ago. We had graduated from college one month before our wedding day and we have experienced all of our “adult life” together - first jobs, first apartment, first baby, first house and everything in between. We said things to each other on our wedding day that carried so much meaning, so much weight, things that many couples say. For better or worse. Richer or poorer. In sickness and in health. To have and to hold. To love and to cherish. Until death do us part. We recited these things to each other and in that moment had no idea how many trials, how many people, how many situations, would try to make those vows null and void. We experienced some trials but Will’s passing, obviously, is the most tragic circumstance we have endured together and it’s not over, grieving the loss of our son will be forever. Multiple people have said something like, “You know 90% of couples who go through something like this get divorced.” I’m sure that’s true but I’m not really sure what I am supposed to do with that information. I know what we have gone through could easily tear us apart. It may not always be easy and we may not always be fully connected but we are committed and the covenant we made with each other seven years ago means a great deal to us.
I met Will’s daddy in college. He was this energetic, outgoing, kind of goofy guy who everyone loved. I saw him as a leader and someone who cared deeply for his friends. He loved Jesus and he had big, grand visions for how he would glorify God with his life. He had this way of getting everyone excited about something as simple as a snowball fight or a dodgeball game, he was a rally-er. I don’t think that’s a word, but he was this guy who could get a bunch of people together and having fun no matter what the circumstances. He loved sports and games and was up for anything, anytime. I was student teaching our senior year and went to bed much earlier than most college students. I always felt a little jealous because he had this whole other life at night when I was sleeping. He was going to late night meals and playing basketball and video games in the middle of the night. And somehow he still got good grades, which I was also jealous of because I had to study really hard to get an A or B. It seemed like everything came easy for him, he was good at almost everything and he enjoyed life no matter what he was doing or who he was with. We had our first baby about a year and a half after getting married and he was a natural daddy. He wasn’t nervous about holding our seven pound little boy, he rocked him in the middle of the night and really enjoyed him, even though neither of us had any concept for how fleeting life is at the time. Then, three and a half year later, we had our little girl and in the way little girls do, she wrapped him around her little chubby finger and he hasn’t moved since. Watching someone you love become a parent is very special. You see them in a whole new light and there are parts of them that come out that you never knew were there before - good and bad - but nevertheless is it a special transformation to witness. Will’s daddy stayed with him every single night he was in the hospital. I am so thankful for that. It probably sounds silly that we didn’t want to leave him there. He was in good hands with doctors and nurses in his room 24-hours a day and we were reassured and encouraged many times to leave him overnight, but it’s different when your mommy or daddy is there. Taylor is fun-loving and goofy, but he is also made for being in that type of high-stress environment. He was emotional, yes, how could you not be, but he could stand strong and remain calm when everything was so uncertain. One thing I admired was that he had this ability to be all in, wherever he is. He could compartmentalize his emotions somehow. When he was with Will, that was all that mattered in the world. When he was at home, he somehow enjoyed our children and played and engaged with them in a way that was much more difficult for me. It was remarkable to me, how he could be at home and not be consumed with thoughts about Will and how he could be with Will and not worry about what was happening at home. I couldn’t be more opposite from him in that way. I think Daddies have a big responsibility. They are responsible for a lot, entrusted with little minds and little hearts that rely on them for love and security and laughter. Sometimes I watch Taylor with our children and I am hit with sadness for what he is missing out on with Will. I am heartbroken that he will never get to take Will to a baseball game or to get a haircut. I wish I could send Will off with his Daddy and big brother for boys only “sleep-outs” and monster truck rallies. I could go on. Loosing a child is different for fathers, I don’t fully understand how but I know the way we process and move through the grief is far from similar. Even though I don’t know exactly how Will’s daddy feels all the time, I do know that his heart is broken that he doesn’t get to spend Father’s Day with Will. We will hold fast to the hope we have been given in Christ and praise God that Will is spending eternity with his Heavenly Father, safe and whole. Will’s daddy loves Will, he loves all his children, and I am so thankful that we have him. For better or for worse, he is there for me, he is there for us and we are all confident that he always will be. In sickness and in health, richer or poorer, he will take care of his family just like he took care of Will. This is an entry from my dad's (Will's Grandaddy's) journal from January 20, 2018. See his entry from Christmas Day here. No Words
January 20, 2018 Grandaddy’s Journal Room 312, Wolfson Children’s Hospital It is impossible to write what you feel. It’s almost just as impossible to say how you feel. There are no words for this. I feel layers of emotions that are unfamiliar – they are layers, one stacked on top of another. There is no rule book or road map for this journey, it’s like a slow ride on a merry go round in the fog. Things are happening, you kind of know it but you don’t really. See, I told you it was impossible to write how you feel because that definitely doesn’t capture it – sounds stupid actually. I watch our daughter grieving, I feel her, I mean I really feel her. I can’t look at her for long because I start to cry. Daddy has to be tough for his little girl. I drive her to the hospital and she sobs the entire way, I try to hold her hand and say things that will comfort her. But there are no words. I feel hopeless, useless. I feel for Courtney, I feel for Taylor, I feel for the twins, I feel for Emma Grace and Joshua, I feel for Candy (Will's Lala). We are sharing a bond we never wanted to share, we look at each other and know but we don’t say much really because we don’t know how. It’s more than words can describe. I think my daughter is an angel, I always have. Courtney sparkles, always has. Her eyes exude peace and love and hope, all the things life is made of. She’s a sweet angel. A natural mother, a nurturer. But she warms and shines on others around her too, not just her children. It’s just her way, her gift. God put Courtney here to have Joshua and Emma Grace and Caroline and Will. These children will bless this world in countless ways. Like a blanket over so much meanness and problems and sickness and hate, it’s the will and love of people like Courtney that really powers the world. This world rotates on that will, it’s a force of hope that is more powerful than anything human or of science. It’s God’s power delivered through worldly mechanisms. It’s not easily recognizable if your brain is more engaged than your heart. But it’s how God works. And there are no words to describe it. But it’s absolutely obvious, God is everywhere and everything. Everything happening is God’s will. It’s 10:00 am at Wolfson Children’s Hospital room 312. Will got a tracheotomy on Tuesday, January 16th. The doctors’ objective now is to free up his mouth and throat, he had been intubated, to allow him to eat like a healthy baby. The trach procedure went well but he’s had some complications this week. Had elevated a fever a couple of nights. There is fear of infection but lab tests have not returned yet so they are not sure. He seems better to me this morning. His fever is gone. He is doing well on the dialysis. He held my hand and looked at toys for over an hour. I showed him Horsey and Snoopy and Mickey Mouse and Gator. We played his music mobile. He followed it, very responsive and funny. Wouldn’t take the paci. Sleeping now. I write in my journal beside his bed. Joshua’s birthday party is happening right now. I’m here with Will so Courtney and Lala can be there. He’s having a Disney Car’s themed birthday party at a bounce house place I think. It’s a cool and sunny January day. About 36 degrees when I got in the car to come here this morning. We have the blinds open on the windows to Will’s room and the sun is shining in. Will is sleeping peacefully now. At home, things are stressful but blessedly so. Joshua and Emma Grace take turns staying with us over night. Courtney stays at home at night with Caroline. Taylor stays over night at the hospital with Will. This is the new normal for now. There is no time frame for when Will will come home. Taylor I think will go back to work about mid-February so the normal may change again then too. We have seen and heard things over the past seven weeks that you never expect. So many doctors, so many different prognoses, points of view, approaches. The thing you do – the socially acceptable response it seems in this situation – is to just gush about how incredible the doctors and health professionals are. To be sure, we are thankful for them and we pray to God to do his work to heal Will through them. But the experience is also a reminder that people are only human. Some of the providers are emotionally present, warm and caring – others are somewhere else, emotionally disconnected and robotic. The hospital workplace culture seems to me like every workplace culture I have ever known, so it is very familiar to me. Some people have higher emotional IQ than others. Some people express and connect while others are elusive, insecure, hiding, paranoid, unsure. Some work with you, some work against you. Some collaborate, some won’t. Some take responsibility, some blame others. I think about this all the time because my own work culture is rife with individuals with higher IQ but lower EQ. To me, however, It seems somehow less “ok” for a health professional to also be an emotionally void robot – but intellectually I can understand how this profession would both attract these types of people and create them. The doctor doing the rounds today and especially the younger intern with him – were both about as emotionally present as a tomato. They were a little like the computers they were pushing around, but not as impressive as the computers. People can inspire more than all of God’s creatures I believe, but they can also disappoint more than any other too. I take this as a lesson to myself to be the change I want to see in others. It’s a common mantra I try to tell myself every day. We can’t make anyone feel, or try harder, or care more, or go the extra mile, or be as strong as Will. But we can do it ourselves – and that light will hopefully shine on others. There’s a feeling on the PICU floor that I sense, one that is unfamiliar to me. It’s an ominous mood of despair and hope all together at the same time. To soak it up, I walk around and take a couple of laps on the PICU floor. Nobody sees me, they are too busy in their iPhones and computers, reminds me of my own workplace. There are many rooms, one after another filled with a baby or young child maybe nearly or more critical than Will. I think, this is a world few people ever know even though there are so many children on this floor. Most of the babies in these rooms are alone, they don’t have a parent with them. A nurse or doctor or housekeeper might whip in and out but few linger. A nurse told Candy that Will is rare because these babies don’t usually have a family member always present. Courtney and Taylor are Will’s advocate every minute around the clock. Everything a doctor suggests receives discussion, analysis and questions. Even more is understood before action is taken, they remind the healthcare providers that Will is a human being, that he is being prayed for by thousands and that they trust God’s Will. Every healthcare human being also gets prayed for along with thankfulness. As I observe this I think, yes this must be an extraordinary experience for these folks. Just had a flurry of activity because Will was very agitated. I think moisture in his breathing tubes may have made his breathing hard, or maybe the dialysis is agitating him, making him uncomfortable. Just talked to the nurse. It seems it’s the dialysis that is bothering him because it makes it hard for him to breathe. The dialysis fluid goes in over a period of about 15 minutes, then it fills up Will’s stomach so it pushes against his lungs and makes it difficult for him to breathe. Then they drain him and he calms down. So that must be what makes him so visibly uncomfortable today? Nurse says this cycle will continue, 15 minutes fluid in, 15 minutes to drain out. Over and over, 24 hours a day for who knows how long? When Will is in pain he cries but makes no sound, the trach muffles it. His fists clinch, his face in agony. He screams silently. I can’t stand it, I hover over him and try to soothe him, I rub his head, I rub his arms. It’s impossible not to cry. How long can this go on? This can’t be right, I think. I pray again for God’s will and Will powers through another round of dialysis. My own heart aches, it’s exhausting to me. But Will powers on. Before reading this post, I just want to say that this reflects my personal feelings and experiences. Every parent that experiences the unimaginable pain of loosing a child responds, reacts and grieves differently. I say this to caution anyone reading this to not assume that every grieving parent wants or needs the same things. I also say this because I think grief changes as time passes and the feelings of parents who have lost a child change with that grief. This is merely a reflection of my personal thoughts and in no way is a “guide” or “tips” for how to approach a parent who has lost a child. Knowing how to navigate the days, weeks, months and years is such an unknown for us and we know it is unknown for all of our family and friends too. There is a lot of grace offered and received. These are rings I wear everyday in memory of Will. The top one says his name. The middle is his and Caroline's birthstone and the bottom is a heart. The bottom two are a set I found called "love and loss," which I thought was perfect for my sweet boy. I was inspired to get a birthstone ring by one of the best and oldest friends. When our twins were in the hospital she sent me a care package and included a birthstone necklace from one of our favorite stores. In her note she wrote "so the twins will always be close to your heart." It was one of the most thoughtful gifts I received and brought me to tears. My first reaction was to hide. In the days and weeks after Will passed my driving force was to remain unseen. I didn’t want to talk to or see anyone. I wanted to retreat, keep my children, my husband and my parents close, but no one else. It’s not because I don’t love my friends and family and neighbors, it’s because I needed time to process by myself. I didn’t need someone crying with me or for me. I didn’t need to hear advice or comforting words or recount Will’s life. I was in shock. I knew Will not being with us was our new reality but it didn’t seem real. I had just held him in my arms as he took his last breath, I put him in a little basket and the man from the funeral home took him away and just like that he was gone. Intellectually I knew that. I knew he was gone but I didn’t really know what to do about it. I needed space. I needed to think. I needed distance from a world that I imagined Will being a part of. I had imagined taking him on walks, picking up his brother from school, holding him in my ERGO while watching our children play in the street with their friends. I had thought about what it would be like to introduce him to our friends and how my children would sit in our four-seater stroller to walk to the playground in the afternoon. I needed to remove myself from that world. I just didn’t have the energy to engage in a world that Will was supposed to be a part of. I knew that at some point I would have to reintroduce myself, my family, into our familiar world. I would have to encounter all the places, people and things that I imagined going to and seeing and doing with Will. And eventually I did but it just took time. That amount of time I’m sure is different for everyone and there is no rule or appropriate amount of time that you can hide from the world. It took me a few weeks and even now, months later, I have days where I need to hide and I think that’s okay. Having people not force themselves on us but simply say, “Hey, we are doing this or going here if you want to join” was the most helpful. I have amazing friends who know me well enough to know that I needed to feel they were there but not be right here. That probably doesn’t make sense but I appreciated it nonetheless. After we started making steps back into our world, there were a lot of “first” to be conquered and I know there are a lot still to come. The first time I drove my car without Will’s carseat in it. The first time I saw my friends. The first time someone who doesn’t know about Will asks “where is Caroline’s twin?” The first time someone asks how many kids I have. The first time someone avoids me in the grocery store because they don’t know what to say. Let me tell you one thing I know for sure, none of us know how to do this. If you have seen me and wondered what to say, not say, how to act, whether to acknowledge Will or not, please know that I have no expectation. I am just as uncomfortable as you, I don’t want anyone to feel like they have to say anything, do anything or act a certain way. If you want to ask about Will, I love to talk about him. I love to hear his name, tell his story and answer your questions. His story, every detail, is ingrained in my mind but I know there is a lot of mystery surrounding it to much of the outside world. If you want to know, ask. If you want to say his name, please do. If you want to give me an extra long hug, that’s fine by me, but if not that’s okay too. I know most people are trying to be sensitive because they don’t want to upset me or cause me to start crying. I promise that I probably won’t burst into tears if you mention Will’s name or ask about him. It’s not because I’m not sad, it’s just not who I am. But if I do, if I have a moment that brings me to tears, I’m okay with that if you are. If you don’t want to mention him, that’s okay too. If it’s not the right time to ask about his story or you feel uncomfortable doing so, then don’t. I promise I won’t be offended or get my feelings hurt. I know there are no words to say. I know there is nothing anyone can say or do to make it better. I know that you don’t know what to do and I want you to know that I don’t know what to do either. I think what I’m trying to say is that however you react, whatever you say or do, it’s all okay. Don’t over analyze it or try to avoid it or apologize for it, just be you and I promise that’s just perfect. These are some photos from March. We spent a lot of time as a family. The past three months had been hard on everyone and we wanted to do things that were fun and memorable with Will's siblings. One day I will write about everything we did and how it helped us grieve, but having that time together was really special and important to us.
Most of the time I feel like I am parenting all wrong but I don’t really know how to make it “right.” It feels like I am supposed to be handling “terrible twos” and sibling rivalry and discipline and screen time and eating habits in another, better way but I don’t really know exactly what I am supposed to be doing differently. There is no manual that tells you how to be a "good" parent. Yes, there is reading and conversing and advice-seeking involved, but mostly it feels like I am just winging it. You’d think with more children, more experience, I would feel a little more adequate or have at least some insight as to how to approach or respond to a certain stage or behavior or circumstance. Not really. Each child is so different in their personality and development that it oftentimes feels like trial and error and error and error and error. Maybe it’s just me, but the feeling that I could be doing everything better is present every single day and most nights when I lay up thinking about what I could have done differently. Regret over not spending more time playing or listening, guilt over cutting bath time short because it was getting so late, longing for more days of little feet and messy faces and sweet baby heads snuggled into my shoulder. It’s all there, day after day, just wanting to enjoy the moment, do it right and create the most magical childhood possible for each of them separately and together. Magical. It’s a word I think about a lot when I am planning our days, our trips, our time together. I want them to remember being swarmed with bubbles on summer days and building forts and making homemade ice cream. I want their childhood to be filled with laughter and fun and smiles and hugs. I don’t want it to go by so fast, I want their littleness to linger and not let them fall into the trap of growing up. “What are we going to tell Joshua?” I asked through tears. I was sitting at Will’s bedside with my dad in mid-December. We had just been asked if we would like to stop Will’s support and just hold him while he passed. The prognosis was bleak, the chances of him surviving were small, pretty much non-existent according to the doctors. He had come off ECMO hours before. His heart was going to stop. His lungs were going to collapse. We had just talked with the neurologist. He came in with his white doctor coat and his old-fashioned medical bag. He was so kind, genuine and honest. He was careful with his words and cautiously optimistic because I needed him to be. We were waiting for Will to die, every doctor had said so at least. I held his little hand and gently rubbed his fuzzy head. “I don’t know,” my dad said, trying not to cry. If he cried I cried more, so he tried not to. I didn’t care if he cried, what else were we supposed to do? My babies were dying and at home I had a sensitive, sweet, almost five year old little boy who was expecting to hold his baby brother and baby sister again. He knew they were sick, but sick to him meant you have a runny nose or a tummy ache. It lasts a few days and you get to drink juice and watch movies all day. He was anticipating Santa’s arrival and his main concern in life was making sure enough sprinkles made it onto his sugar cookies. How it should be - a magical childhood. My job was to make him feel safe, loved, valued, secure and fill his days with joy and fun. But how could I do that now? Now I was going to be the one telling him that his little brother was gone. He would never see Will again. While I had so many dreams of life with my twins, my four children in a perfect, blissful, bubble-filled magical world, he had dreams too. We had talked about teaching his little brother about how to build train tracks and passing down clothes and taking bubble baths together. Now he wasn’t going to get to grow up with his best friend. He wasn’t even five, how could I bring this hurt, this intense pain and suffering into his world? Endure the pain of loosing my baby boy, then inflict that same pain onto my other baby boy. How could I do that? What am I going to tell him? I thought about it many times in December. I agonized over what that conversation would be like. I played out his possible reactions in my mind. The days went by and I never had this dreaded conversation. Time kept passing and Will got better and soon I stopped thinking about what I was going to tell Joshua. I started thinking that Will was going to be okay, Joshua could have the little brother we dreamed of. I started thinking about the normalcy of brotherhood again, the special bond they would share with each other. Then March came and I knew something was wrong. We all did. One morning I was in Joshua’s room, sitting at the end of his bed and talking to him as he was waking up. I looked at his bed full of stuffed animals and I saw Will’s bear. My mom had gotten it for Will and Joshua was keeping it safe until he came home. I asked Joshua what he would think if Will went to be in heaven with Jesus. He was looking down, messing with one of his stuffed animals, and without really thinking, without even looking up or making eye contact with me he said, “I would be sad that I don’t get to see Will grow up, but I would be happy that he was in heaven with God and that I would get to see him again one day when I go to heaven.” I tried to hide my tears, I didn’t say anything but I just pulled him in and hugged his little head. I didn’t know what I would say to Joshua, but he had just told me what to say. If Will’s life really was coming to an end, if the conversation I had been dreading was about to happen, I now knew exactly what to say. I didn’t want it to be true. I wanted Will’s decline to be another set back, an infection that he would recover from, a bump in the road. I prayed for a miracle until he took his last breath. One of the moments I had feared since December 6 was over but the other one still loomed in the near future. I held my sweet, perfect baby boy in my arms as he took his last breath and now I had to tell his big brother. I had imagined it but the past few months I was convinced that it wasn’t going to happen, they would be together and the awful scene I played out in my mind was just that - in my mind and there to stay. We woke up the morning after Will’s passing completely numb. We had one task that day. One dreaded task. Joshua was at school, he and his little sister had spent the night at my parent’s house and they took him to school that morning, so we hadn’t seen him. It was the day he stayed for his after school activity, so pick-up was later than usual. All day to think and rehearse and anticipate. We were sitting on the floor with Caroline playing in her gym next to us. The moment I saw him walk around the corner I started crying. “We have something to tell you buddy,” and then we broke his little heart. We told him, we held him, we all cried together. I was prepared to answer hard questions but he didn’t really have much to say. Since then, the questions have come, watching him process and trying to figure out what he is feeling and thinking is difficult sometimes. On top of all the hard things about parenting that I wish I could do better, I am now trying to navigate how to help a five year old little boy grieve. If there were a parenting manual, this would not even be a part of it because it’s just unnatural. Siblings should grow up together, their childhood should be enchanting, filled with playing and laughing and fighting and running and being silly together. They shouldn’t say goodbye when they are young. When they are old and one passes away, they should have years and years of stories and inside jokes and memories to share. They should reminisce with a smile and think about all the memories they shared that were only theirs - their childhood. They should get to become an uncle or an aunt and raise their children together and have cousin sleep overs and trips and dance parties in the kitchen. It doesn’t seem fair that a child should be robbed of all of those things and have to endure the most unimaginable pain that they aren’t even old enough to really understand or comprehend. “What are we going to tell Joshua,” is now something that I ask myself frequently. As he grows up and gets older his grief, his questions, his feeling and his emotions will all change. I will constantly be second-guessing myself - how I answered his questions, if I am supporting his emotions adequately and if I am doing enough to help him grieve in the way he needs to. It’s a burden I feel incapable of carrying but God provided the words then and He will continue to provide them as we navigate a whole new, unexpected realm of parenting. I treasure both of my boys and I want them to still have a bond even though it won’t ever be in the way I hoped for or imagined. What I want to tell Joshua is that his little brother is with Jesus and he is no longer sick but completely healed and whole. I want to tell Joshua that his little brother was strong and sweet and cherished. I want to tell Joshua that he should be so proud of his little brother because he has made a bigger impact during his 96 days on Earth than most of us will make in an entire lifetime. I want to tell Joshua that his little brother would have loved him and looked up to him so much. I want to tell Joshua that I am so sad that I don’t get to see Will grow up. I am so sad that I don’t get to see them play catch or open a new race track together on Christmas morning or ride bikes up and down our street. I want to tell Joshua that his feelings and emotions are valued and valid and that he should never try to hide them because he is scared or embarrassed. I want to tell him that it’s okay to be happy, it’s okay to cry, it’s okay to question and wonder and wish. I want to tell him that his daddy and I will always be here for him, we will always miss Will with him and we will always, always try to give him a magical childhood. I want to tell Joshua that we love him, no matter what, and always will. Will with his big brother, Joshua. They only got to know each other for a few days, but there was a lot of love between them. At the end of the video, Joshua is holding Will and says, "your brother is holding you." I will cherish that forever, knowing that Will knew the love of his brother and as Joshua said, one day they will see each other again in heaven. I can only imagine what a joyful reuniting that will be!
By mid-January Will was on a path. He was stable and making small improvements each day. His recovery would be a long, slow process, but we truly believed he would get better. We were thinking of the future - a month, six months, a year - and planning how we could help Will have the best life possible. On January 10 the medical staff started talking about Will getting a trach for long term respiratory support. He had been weaning slightly from the ventilator, but not enough to be extubated in the near future. There are complications that can arise when a child has an ET tube (the tube used to intubate a patient on a ventilator) for a long period of time, so a tracheostomy (the surgery to get the trach inserted) was the safest way to give Will the support he needed. Having a tracheostomy meant two things in my mind. One, he was stable enough to get the surgery. Two, he would be a technology dependent child for as long as he had the trach. The doctor thought he might need it for a few years to give his lungs time to develop and outgrow the pulmonary hypertension that he had developed. The thought of taking care of a child with special needs who requires medical support to live was slightly overwhelming but nothing we couldn’t handle. Taylor and I were certain that we could learn to care for Will’s trach for as long as he needed it. Will’s tracheostomy was on January 16. The surgery went well with no complications and for the first time Will didn’t have anything on his face except for his tiny feeding tube. He was so cute and I could just imagine him as a sweet little toddler running around with his trach - I have these little green plaid overalls for him and for some reason I always imagined him in those. From that day on we tried to watch and learn as much about Will's trach as we could. We started by just observing the nurses as they took care of him and his new trach. They changed the ties daily and changed the trach about once every week. His ventilator settings were adjusted frequently and we tried to learn about all the settings and numbers on the ventilator as well. Soon we started helping with trach changes and changing the trach ties. Of course Taylor could do it all without a problem and with much more confidence than I could. I was more cautious, scared I would hurt him or cause an emergency. The trach is inserted through a hole in the child’s neck called a stoma and there are two velcro ties, one attaching to each side of the trach, that go around the child’s neck and attach in the back to hold the trach in place. Every day those ties have to be changed out and the neck area has to be cleaned. It’s a whole process involving a lot of supplies. The nurses could change his trach ties by themselves in just minutes and were very patient when they were teaching me and letting me practice. Will cried most of the time his trach ties were being changed, so I wanted to go as quickly as possible so he could get comfortable again, but I was so careful that it took a long time. After doing it a few times I got more comfortable, still slow, but I felt proud that I could do something to take care of my son. We were prepared and ready for life with a trach and we had so much hope that it would help give Will the time he needed to get better. Before Will got a trach I knew literally nothing about it. The only person I knew of who had a trach was Christopher Reeve. So when the doctor first mentioned that Will might need a trach, I googled Christopher Reeve. I mostly wanted to see what a trach even looked like and maybe gain some insight as to what it might be like for Will to have one. I watched a few videos of him talking with the trach and read about his accident and what his life was like after. Obviously Will's situation was very different, he wasn't paralyzed and didn't have the same type of injuries as Christopher Reeve, but they had the trach in common and that was a big part of each of their stories. As I was reading I ran across an article about an interview with Christopher Reeve from 1998. It focused on his life before and after his accident and the transformation he went through. There was part of the interview when he was talking about the days after his accident and he was contemplating asking the doctors to remove his support because his injuries were so grave. When discussing it with his wife she said she supported whatever he decided and that she would still be in it with him for the long haul. Then, he says, she added the words that saved his life, “I love you. You are still you.” We felt the same about Will. He was still Will. Whether he had a trach or not, whether he had a disability or developmental delays, whether he was sick or healthy, whether he needed medications or dialysis or special care or not, he was still Will. He was still ours. Reading about Christopher Reeve helped in a way I didn’t expect it to. I researched him merely to see what a trach looked like and ended with a profound confidence that we were doing the right thing. The option to stop, to remove support and let him pass was still there. We didn’t have to move forward with the tracheostomy, but reading those words confirmed what I was already feeling - just because Will needed extra support didn’t mean he was no longer Will. It is inspiring to read about someone who makes a tragedy into a blessing, turns heartbreak into something positive and Christopher Reeve did that. Will did that. After Will got his trach he had a hard time recovering. There were a few days and nights when he spiked a fever, had a high heart rate and was breathing fast. It was scary for a few days because we didn’t know if he had gotten another infection that would maybe start attacking all his organs again. After a few days he was much better and back on his path to recovery. We were praying for his kidneys to start functioning, for his heart to get stronger and for his lungs to continue developing. We prayed that God would give him a full recovery and believed with confidence that God could do it. Believing with confidence is easy to write, hard to do. Christians hear a lot about having "faith of a mustard seed." It's from a passage in Matthew and another in Luke when Jesus is talking to his disciples and tells them if they have faith the size of a mustard seed then they can move mountains. A lot of times in my life, and especially during Will's life, I have felt like if I just had more faith, more confidence in God's promises, if I just didn't doubt Him at all, then I would see God do amazing things, move mountains. What's encouraging about Jesus' words is that a mustard seed is really, really small. Will taught me what it looks like, what it feels like, to have that type of faith. There are many times during Will's life when I was discouraged, heartbroken, helpless, I questioned God and I didn't understand why Will was so sick. A lot of times I fell into the trap of feeling that if I just had more faith in God that He would heal Will. I was so arrogant to think that my faith had so much to do with it, like it was somehow all on me. God tells us to have faith of a mustard seed because the focus is not on our faith, the size or amount, it is on our God. Faith is putting your trust in WHO God is - He is the object of our faith and so often we tend to make ourselves or our circumstances the focus. God never promises health or wealth in the Bible. God promises eternal life to everyone who believe in Jesus. God promises Romans 6:23, "For the wages of sin is death, but the gift of God is eternal life through Christ Jesus our Lord." Just a little bit of faith, mustard seed-sized faith, in a God as good, as powerful and as almighty as my God is sufficient. It's enough to witness the miraculous, move mountains, because that same faith is enough to secure my eternity. It's not about how much faith I had that God could or would heal Will, it's about who I was putting my faith in, continuing to declare Christ and trust in Him. I saw miracles, over and over, in that PICU as my two babies overcame incredible odds, lived when they shouldn't have and survived when we were told they would not. Will getting a trach might seem discouraging, he was going to be a ventilator dependent child for the foreseeable future and there are challenges that come with that. But mustard seed faith means that God is bigger than any technology, He is bigger than any diagnosis and He is bigger than any challenges. God is good no matter what. We didn't see Will's trach as a negative or a set back, we saw it as a step in his path to recovery. He was still Will, still our baby boy, whether he needed extra support or not. A lot of learning, a lot of humility, a lot of unknowns. I learned a lot about mustard seed faith and a lot about Christopher Reeve, a lot that gave me perspective and confidence, but my most favorite thing about him - his son’s name is Will too. I like that. Will before and after his tracheostomy. The picture on the left shows him intubated, the ET tube is coming out of the side of his mouth is a taped down across his face. The picture on the right is from the day he got his trach, it is the tube coming from his neck. Both were attached to the same ventilator that gave him respiratory support while he recovered.
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January 2023
AuthorMy 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! |