 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 :)
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