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.
January 20, 2018
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.
Our mission is to children from developing countries receiving heart treatment in Jacksonville, FL.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!