There are times when I know God is speaking to me. If you aren’t a believer in Christ, I know the next paragraph, actually probably this entire blog post, will make me sound like a either total nut job or one of those judgmental religious people who hold up a sign outside the Jags game that says “You’re going to Hell” and maybe even yelling at you through a bullhorn. That’s okay, I make a conscious effort to be as non-judgmental and non-religious as I can, but I think being a Christian is supposed to make me look different and that might make others uncomfortable or skeptical. Just try to stick with me. Believers, you know that undeniable voice of the Holy Spirit? I heard it on Sunday. It might be cliche but I heard it through our Pastor during church, that nudging on my heart telling me that God had something in store, something big, something important, something that would honor and glorify Him. The passage was Romans 15:8-33 (listen to the entire sermon here). Paul urging the Jews and Gentiles in Rome to live a life poured out for the Gospel of Christ. A life well-lived is not measured by status or accumulation of things or worldly achievements. The only thing we can take with us to heaven is people, not our stuff or status, so we ought to be living on mission every day to share God's message of salvation. Such perspective. As I’m hearing this I am overcome with gratitude that God has given us an outlet, a platform, to carry out this mission through Will. I’ve always known it and recognized it as a gift but it was just crystal clear as I listened to our Pastor unpack this passage. The Will King Foundation is not an experiment or a side project, it an avenue for us to glorify God by not just helping others receive life-saving medical treatment but most importantly by sharing with them the life saving news of the Gospel that could change their eternal trajectory.
When Taylor and I were in college we wanted to be missionaries. Reach the nations, Africa specifically. We would gather in prayer for unreached people groups and shared our desire to bring the Gospel to people who have never heard it. I remember reading “Five Who Changed the World” by Daniel L. Akin, a book that shares biographies of five missionaries who changed the world through their obedience to the Great Commission (Matthew 28:19-20 which tells believers to go and make disciples of all nations). I was audacious enough to think that God could use me to be one of those world changers. I say audacious because I was immature and self-centered and thought that I had something to offer. That God would use me because I was smart or well-educated or could quote a bunch of scripture. My intentions were right, but my heart was in the wrong place. I was pouring my life into achievements for God, looking like a “good christian” and impressing others with my passion for missions when really I was just like the Pharisees. Like a white washed tomb (Matthew 23:27), I looked good on the outside but I was too loud, too wrapped up in myself to really listen to the Spirit of God inside me.
Just for fun - here we are in college - two kiddos with hearts to impact the nations with the Gospel with no clue how we were going to do that.
Fast forward ten years. I am more heartbroken and weak than I have ever been. Most days I have nothing to give because grief over losing Will and caring for his three siblings takes literally everything out of me. But God is working in and through me and because I am humbled, because I have nothing to offer of myself He can truly receive all the glory and all the praise that He deserves. It has nothing to do with me. Our Pastor told a story during this sermon about a time that he was at dinner with Billy Graham. First off, can we just pause and imagine how incredibly amazing and surreal that must have been? Eating dinner with a true world changer, someone used by God to bring thousands into the Kingdom of God. A multitude of souls are in Heaven because they heard the Gospel from Reverend Graham. Our Pastor asks him this question, “If you could preach one more revival, what would you preach about?” Billy Graham responds that he would preach on Galatians 6:14, “But far be it from me to boast except in the cross of our Lord Jesus Christ, by which the world has been crucified to me, and I to the world.” Our church has this awesome nursing room for mothers. It has a comfy couch and a TV with the sermon playing and it is quiet and calm. I was in that room, sitting on the couch holding sleeping Caroline and it all seemed so clear but far too simple. Those world changers, the ones who have brought the Gospel to the masses and the unreached people groups and the nations, they all did just one easy thing - boasted in Christ.
At this point I was on fire, dreaming of all the children and their families that would get treatment through this foundation, hear the Gospel and take it back to their nation. I thought of these little children reading the Bibles we give them one day and trusting Christ with their lives. It’s always been what God has put on my heart - reaching the nations, impacting others with the Gospel - it’s just not the way I thought I would do it. I pictured myself living in the depths of the Congo or in a village in southern Africa singing songs about Jesus with children and teaching their mothers how to read the Bible for the first time. I never imagined that I would get the opportunity to reach the nations through the personal tragedy of losing my most precious child. And if I’m really honest, I would give it all up - all the lives that I believe God will change, all the nations that will hear the Gospel, all the children that will read a Bible for the first time - I would happily, willingly give it all up if I could have Will back. One for many - I would exchange everything if I had the choice because that one life given was my son. It really puts an entire new perspective on the Gospel, doesn’t it? God willingly, sacrificially gave His Son to cover the sins of many. God experienced the deepest pain of watching His Son die on a cross so that I could be forgiven, so that I could have eternal life with God, so that my wrongdoing could be atoned for. I would never choose to give up a child, not for anyone or anything, but God - “God so loved the world that He gave His only Son, that whoever should believe in him should not perish but have eternal life” (John 3:16).
Impact is not measured in quantity or massive amounts. I think that world change starts in our homes because most importantly, I am a minister of the Gospel to my family, my three children. If God cannot entrust me with that how can He entrust me with more - Will’s foundation and getting the opportunity to effect change worldwide? It’s a gift, a blessing and a privilege that I will never take for granted. Getting to be a part of global missions is a dream that God made come true in my life in a completely different and unexpected way than I ever hoped for or imagined. Although I would trade it all in for Will, that’s not an option and instead of wallowing in that (although sometimes I do) I think that what Paul is saying is to boast in Christ instead. Don’t get so wrapped up in the things of this world that you miss the Gospel, you miss what God is doing in and through and around you because of what He already did FOR you. Focusing on grief and pain will only lead to more grief and pain. There is a place for it and in my life that place is quite large at the moment, but it turns our view inward, to ourselves. It is so easy to get wrapped up in being sad or missing Will that I can miss what God has for me, for my family. I will miss my boy for the rest of my time here on Earth and I will always want him back, but Will is safe. He is with Jesus, completely whole and protected.
We started our freshman year of college over ten years ago and God has grown that desire in my heart to share the Gospel with the world into something beautiful through my greatest tragedy. As I look at my lonely copy of “Operation World” on our bookshelf I am thankful that now I don’t get to just pray for unreached people groups, I get to pray for actual people. With names. People who I personally know. I get to pray that children who are a part of The Will King Foundation will be world changers. I hope that I am able to continue following them as they grow up, but maybe I will never know what they ended up doing or becoming. It doesn’t matter because I truly believe that they will create change - some as business men and women, some as parents or teachers or entrepreneurs or political leaders. Maybe some will work in ministry or be preachers or church planters, others become doctors or nurses or public servants who spend their lives helping others. Some of them might have a positive impact their family or community by simply being a kind and compassionate person to those around them. I don’t know what God has in store for each of their lives, but I am extremely honored to know them, children who have gone through so much just to live and now their chance is ahead of them. The gift on an entire lifetime to create meaning and purpose and change. One time my dad said Will is like the spark. One day, years from now, someone will hear about the Will King Foundation and all the children who have been impacted and affected. It won’t be about us, it won’t even be about Will, it will be about the way it changed the life of another. They will wonder, “Who is Will King?” and discover that he is the inspiration. As we continue to move forward we will keep pointing to Christ and be proud of all that He is doing through Will’s life and death to change the world.
The tiniest spark can inspire world change in the hands of God.
This has been the most difficult post I have published. Before you read it I want you to know that there is sensitive and controversial information about medical support. This is my personal opinion based on my experience with my son, I am in no way commenting on anyone else's decisions regarding medical support. I respect and admire anyone having to make "end of life" decisions for their child or loved one because I know the weight of it is more than anyone should have to bear.
There were multiple times during Will’s life that we were asked whether we wanted to continue supporting him or not. As I have said before, Will was dependent on medicine and technology to live and the question was when is it too much? Where is the line? How can you decided if there even is a line when it comes to your child? Anything and everything - that’s all I wanted them to do to save my baby. I’ve never had to make decisions like this before, so I don’t really know and maybe I’m totally wrong, but seems like the line might be more clear with someone older or someone who can make these decisions for themselves. Someone who has lived a long, amazing, meaningful, productive life and makes a decision to not continue taking medications or to stop ventilator support. I’m not saying it’s at all easy for that person or their loved ones, all I’m saying is that a child just seems different. My own child is different. He hasn’t had a chance at a long, meaningful life. We wanted to give Will the best chance possible and taking away his support felt like taking away his chance, especially when he kept living after so many people told us he wouldn’t.
The first time we had this conversation was after Will came off ECMO, December 13. The attending doctor told us that Will was in a “vegetative state” and suggested that we remove the support and just hold him until he passed. I didn’t have much to give, but something came from deep inside that told me to fight for my son. We talked to a lot of specialist that day and there were so many conflicting opinions. We hung onto two, the two we trusted the most, the two who were fighting for Will with us and willing to give him a chance - they were honest, but optimistic. The cardiologist said that while Will’s heart was weak, he still had hope that it could recover. The neurologist said that his brain stem was completely in tact and he was by no means in a “vegetative state” which opposed what we had heard earlier that morning (don’t get me started on the irresponsible comments from doctors). How could we not keep going?
On December 24, another doctor came in to talk to me about Will. She explained the condition of his heart and the effect that kidney dysfunction was having on his entire body. She also mentioned his brain bleed and how we don’t know what his neurological status would be in the future. It was the second time that someone asked us if we wanted to take away Will’s medical support and let him die. She said, “Will will not recover” definitively and expressed that while it was reasonable to give him more time, she did not think he was going to get better.
Sometimes it felt like it was less about whether Will could live or not but more about what his neurological status would be if he did. Like his life was worth less because he might not be a "normally developing" child. He might be severely disabled, he might never walk or talk or he might have severe epilepsy. Depending on who you talked to, the not so subtle undertone of conversations like this was asking if we would still want him if he had a disability or severe special needs. Of course we would. We wanted him no matter what. No one could say with any certainty what he would be like in the future and taking care of a child with special needs didn't scare me. All of January and February he was responsive, looking around and acting like a typical 1-2 month old. That’s not to say he wasn’t going to have any issues down the road, but it’s not to say he was either. We learned that baby’s brains are different than adults because they aren't fully developed and there was a chance he could have a full or almost full neurological recovery. Nurses told us that if they didn't know about his brain bleed they would assume he didn't have any neurological issues because he was acting so appropriately. There was a chance he could have some type of learning disability or ADD or a developmental delay. There was a chance for autism or cerebral palsy or a number of things that would classify him as “special needs.” No one knew, no one could ever predict what would happen, but there was that chance that he would be severely damaged, so would we still want him if that was the case or do we want out now before it’s too late?
We had this conversation with multiple different doctors and nurses throughout his time in the hospital. Before Will got a trach and every time his blood pressure was low we had this conversation again and again. Everyone we had this conversation with is human, which means every one of them has their own opinion, experience and viewpoint. Some were more callused and harsh than others, but ultimately we had to take in everything we were hearing and make our own decisions. The most helpful advice we received was from one of Will’s nurses and one of the wisest people I have ever met. She had a lot of experience, nursing and personal, and during one conversation with my mom she said, “there are things worse than death.” She said it as a passing comment, not meaning to be particularly profound, but my mom told me about it later because it had made an impact on her and she thought it might be helpful to me. I listened and agreed, but really didn’t think much more about it after our conversation.
In early March, some of Will’s last days, her words came back to me and rang so true. We live in a culture that is scared of death and often tries to prevent it or prolong it with medicine and technology. Death is scary if you don’t know what happens after you die. If your salvation in Christ isn’t secure, then death is uncertain and finite and scary. But if you have hope in Christ, if you believe that the wages of sin is death but the gift of God is eternal life, then death is not scary or finite and it’s definitely not the worst thing that could happen to you. I know that is offensive to some people, I know it’s not “politically correct” to talk about faith in that way but I believe the Bible is true and that’s what the Bible says. So yes, there are things worse than death, but life is still valuable and fragile and wanted. Will’s life was desperately wanted. There is nothing more I wanted then or now than to give him life here on Earth. I would have done anything. Removing medical support wasn’t a decision that could be made flippantly or out of fear and that’s why those conversations always ended with continuing what we were doing, prayerfully expecting that he would get better in time. After these conversations I would just pray that if God wanted Will He would just take him, I pleaded to not have to make a decision about his support. Every time we were confronted with this conversation, there was still the question of where is the line. When is enough enough? How do we know that if we didn’t try just one more thing that he would be saved? How did we know that if we didn’t just give him more time he could recover? How could we make a decision to take away his support and regret it for the rest of our lives, always wondering “what if…?” Each time we had this conversation it always ended with the decision to keep giving Will a chance. How could we let him go? It didn’t seem right. We had to fight to get him and we were going to fight to keep him.
On Christmas Day, Taylor texted this to me, “God has every day of their lives already recorded and He is not surprised by any of this.” That was another truth we had to hold onto, that despite all of the equipment, machines and medicine, God was and always will be in the One in control. It doesn’t mean that we can’t make decisions or think for ourselves, but God always knows what is going to happen before it happens. Psalm 139 says that every one of our days are already written. God knew Will’s first day and his last and every one in between. In the midst of such deep sorrow and inner conflict, this was comforting when we were being asked if we wanted to keep supporting him. We knew that if we had decided to withdraw support at any point, God could have intervened and kept Will alive. As we choose to continue support, Will still could have passed away even with all that help.
I’ve mentioned before a conversation I had with one of Will’s doctors who told me that we would know if Will’s time on Earth was coming to an end. I believed her, but I didn’t know how we would know and I hoped I would never find out. I prayed over and over that if God wanted Will that He would just take him. I prayed that we wouldn’t have to decide to remove his support or not try another procedure or not give him another chance. I didn’t think I could live with the uncertainty, constantly wondering what would have happened if we continued instead of stopping. I’m sure it was her experience that led her to say that to me because on March 6, I knew. Will had been having constant seizures for almost four days. They were coming from all over his brain and could not be stopped even with multiple, potent anti-seizure medications. His heart was getting weaker and he was having support added instead of taken away. As all this was happening I started to feel in my gut that this was it, this was his time. Of course I ignored it, he had survived so many times before and I wanted to believe this was just another bump in the road, another miraculous recovery. I wanted to believe that he would pull through. It might sound weird because even when I think about it today I have a hard time understanding it, but on March 6, I walked into Will’s room and I had an undeniable, overwhelming sense that Will was already gone. Yes, he was still breathing (with the help of a trach/ ventilator), his heart was still beating (because of an epinephrin drip and multiple other heart medications), but I looked at his sweet little face and I knew that he wasn’t there. God was gracious and it wasn’t really a decision because it was already happening. His body was shutting down even with all the rescue medications and machines and support being added. And the words that were spoken to me in December, the words that I didn’t understand, the words that were confusing and intimidating, they all the sudden were perfectly clear. You will know. And I knew.
This is one of the last videos I have of Will, taken on February 27. I love how he is peacefully dreaming and I loved when he did that nursing motion with his lips. The sound he makes when he is breathing is normal because of the trach, his breathing is not labored, it's just how he sounded based on his position or if there was a small leak around the trach. We liked to use his stuffed animals to position his arms and legs and snuggle up next to him so he felt comfortable and secure and the lullabies playing are from his nurse, Misty. He is swollen because his kidneys were still not functioning and the dialysis was not working as well as it had been to remove excess fluid. This was one of the last times I remember him sleeping peacefully before he began to decline. When I watch videos of him sleeping I just can't help but remember how incredibly sweet he was and wish so badly that I could peak in at him sleeping in his crib tonight.
Two days after Will passed Taylor and I had to go to the funeral home to make final plans for our baby. It was agonizing. Taylor and I took Caroline with us and pulled into a cemetery near our home. Sitting in the passenger seat I looked around at all the headstones. Lots of years between each dash. Not for my baby. It didn’t seemed fair. Right before we got to the funeral home we drove past the section reserved for children. I could tell because it was littered with stuffed animals and baby blankets and little angel statues. All I could think was that I couldn’t leave my baby there. We got out and walked in to meet a nice lady who sat down at a conference table with us. She had a folder with pricing and options and we were supposed to make decisions and sign a death certificate. We had just gotten his birth certificate and now we were supposed to sign a death certificate. I just sobbed as Taylor tried to talk to her and read my body language as we answered her questions. She thought he was a stillborn at first, then noticed the 96 days of life he had here on Earth and apologized. She tried to be sympathetic, she said she understood because her daughter was in the hospital some when she was younger. I just nodded, she didn’t understand but what are you supposed to say to us? There is nothing to say.
“Do you want to see him?” she asked, tilting her head sympathetically. Before we arrived I told Taylor I didn’t want to see him. I said it out loud because I wanted him to hold me accountable to that decision. I knew that I wanted to remember him alive, plus I had already seen him with no breath inside him and it was terrible. I also knew that when we got there, when we were so close to him, I might want to change my mind and end up regretting it. When she asked part of me wanted to scream, “YES, give me my baby!” Part of me wanted to check to make sure he still wasn’t breathing, maybe the doctor was wrong, maybe he still had a heartbeat. Part of me wanted to hug and and kiss him one more time. Part of me wanted to touch him and wrap him up in his blanket and just hold him. A bigger part knew that I shouldn’t, I couldn’t allow myself to see him again. I said goodbye when he was safe in my arms. I kissed him for the last time and laid him down in this tiny basket and wrapped him in his blanket and told him I loved him. He wasn’t here anymore and if I walked in to see him one more time I would see a shell of the body he once lived in. He was not his body, his soul was with Jesus. “No,” Taylor replied as I shook my head and cried. She brought me the outfit and blanket we had dressed and wrapped him in and handed it to me in a neatly folded stack. I held it the whole way home, it felt like all I had left of him.
We choose to cremate Will and place his ashes in a ceramic jar. It sounds silly but I just couldn’t put my baby in the ground, I wanted him “with me.” I know there are some pastors that I respect and some smart Bible theology people that disagree with this decision, but it's where my heart was, wanting my baby with me, in my home and with his family. The thought of burying him was traumatic but at the same time I couldn’t stand the thought of his little body being sent to the crematorium. No one could understand how precious he was. But I kept telling myself that he is not that little body. The truth that he was in heaven and not in that body anymore is the only thing that helped me go through with it. One of the next decisions we had to make was which urn to choose for him. I searched for baby urns online and as I typed it in I thought about the word urn and how it’s not a word that should be used in the same sentence as “baby.” I found one that was handmade, ceramic, simple. There is a verse in the Bible, 2 Corinthians 4:7, that says, “But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us.” God brought this verse to both my and Taylor’s mind separately and when I showed him we both agreed that it was what we wanted for Will. He is a treasure. On the front we have his name printed, “Will King Hughes,” and the back says part of Romans 12:2, “God’s good, perfect and pleasing Will.” We claimed that verse many times over our son and we think it describes him in our eyes and God’s - good, perfect and pleasing.
Taylor went to pick up his ashes a few weeks later. It was just the smallest little bag and the urn hadn’t come yet, so I put the bag in my bedside table. It just felt so wrong but there is no right when it comes to the death of a child. I wanted to get a shelf to hang up in our home and put some of Will’s things on, including his urn, but I procrastinated on it for a bit and the ashes stayed there in my beside table for a few weeks. All I could think about was how he was supposed to be sleeping by my bed in a bassinet, how this was wrong in so many ways. This little shelf would possibly, probably, be the last thing I would ever buy for Will and I didn’t want it to be over. I finally ordered the shelf and Taylor hung it in a corner in our room when I was out of town. I came home to this empty shelf that I was supposed to decorate with Will’s things. I wanted it to be filled with meaningful objects so that every time we looked at it we were reminded of his joy, his perseverance, his sweet spirit.
I tried to make it meaningful, include things that remind us of him, things that we can tell his brother and sisters about one day. His urn, filled with his ashes, our treasured son laid to rest in a jar of clay. The "first tooth" and "first curl" boxes I had bought for him, nothing will ever be in them, but it still didn't seem right to get rid of them or hide them away somewhere. They were in his stocking. A picture of him, which I see every time I walk into my room. I couldn’t decide which picture to choose. Part of me wanted to put a newborn picture from his first day of life. No cords, no equipment and not sick. Instead I decided to choose this picture of him in the hospital when he was a few months old. Yes, he has tubes in his nose and tape on his face, but his little eyes. I just love the way he is looking up with his little eyes and the kind, sweet expression on his face. That was Will. On the top shelf I have his little dog stuffed animal, something he held and had in his bed. I have a box with the outfit we put him in after he passed away. Noah’s arc hat, blue socks and blue bunny sleeper. It has his name engraved on the window. I thought about the person filling my order. They probably saw “Will King” engraved on the box and thought it was maybe a baby shower gift, or something a new mom just ordered to display some newborn clothes in that her baby recently grew out of. One of his books, “On the Night You Were Born,” that we read to him. And a special wooden box given to me by a friend after his passing. My friend got this box on a trip out of the country and it has a small angel inside it. Inscribed on the box in German is “Good luck, angel.” It was such a thoughtful gift and it reminds me of all the support, love and prayers we had from so many friends. And Will was a little angel.
Shelves in my children's’ rooms are filled with pictures of them, painted ceramic artwork, their favorite stuffed animal when they were a baby, their first Mickey Ears. I reorganize the shelves as they get older, I add new art work or switch out a picture to a more current one. Will’s shelf is so finite. As I organized it I probably shifted around the objects dozens of times. I knew exactly how they would look the best, how they would fit well on the self, but I didn’t want it to be over. Decorating that self was something I could do for Will, and I knew it might be one of the last things I do for him. I am reminded of how I felt decorating that shelf often. I so badly wanted to be able to do more for him. I want to help him get dressed and put shoes on and brush his teeth. So many times when I get exhausted with one more person who needs something from me, or when all three children need me at the same time, I think about that shelf and my perspective immediately shifts. It’s an honor, a joy, to be able to do things for my children, even if it’s something they are able to do themselves. One day it’ll be the last time I pour them a cup of milk, the last time I help them tie their shoes or comb their hair. How I wish I could help Will do all those things, how I wish I could help him, teach him, bring him something, anything. I’m not advocating for being your child’s servant, I know that it’s my job to teach them responsibility and independence, but sometimes when I think about that shelf I just want to do everything for my Will, and since I can’t, I want to appreciate the gift of helping his brother and sisters. Will is a treasure and so are they, and what a gift that they are here with me, three people who I get to reorganize shelves for for years to come.
Making all those final decisions for Will seems kind of blurry now. Almost like I was inside some else’s body because how could this be my life? This is the kind of stuff you read about on some blog, written by someone you don’t know, and sympathize because you can’t imagine if that were you. It’s something no one expects and no one deserves. Googling “baby urn” and paying a cremation bill and writing a message about your son’s passing to send to family and friends is all just so unexpected. I have questioned some of those choices since then - did we pick the right urn? Is it okay that we choose to cremate him? Should we have given him a marker somewhere? Did we honor him well? Did we do it right? But I don’t think there is really a “right.” There is no manual for how to do this, how to lose a baby. We made decisions that we thought would best honor Will and continue to make him a part of our family and our home. I am always thinking each time I do something “for Will” it might be the last time, but it seems like there is always something else to do for him, in his memory or his honor and I hope there always will be. I feel like the best I can do is give him a legacy, help him be remembered by others, his name not be forgotten. His life, although much too short, mattered. He made more of an impact in 96 days than most of us will make with an entire lifetime. I thought of this idea of “96 days, 96 ways” (details below) after we returned from the funeral home that day. I didn't really know what to do with it or how to even make it happen. After a few months of it floating around in my head, I decided that it would be the perfect way to remember his time on Earth. I am looking forward to celebrating him each of of those days, and every day, until we meet again.
"But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us." ~2 Corinthians 4:7
In a few short months we will celebrate the one year anniversary of Will’s 96 days on Earth, December 1 - March 6. I know every one of those days will be filled with a lot of emotions, grief and joy as we remember a year ago when we had Will here with us. To honor Will’s 96 days on Earth, I would like to post 96 ways he has impacted others, one on each day he was alive. Whether you knew Will personally, are a friend of our family or don’t know us at all, if Will or his story has impacted you in any way, we would love to hear! Here is how to be included in 96 Days, 96 Ways:
1. Write they way(s) in which you have been impacted by Will. It can be one sentence, a story, letter or just a few thoughts. Nothing fancy or eloquent, just simply what our little boy and his story has meant to you, how it has changed you or encouraged you.
2. Email to email@example.com (please specify if you would like to be kept anonymous)
3. Look for your story during one of the 96 days and share with the hashtag #96days96ways
Thank you for you participation in helping us remember Will during this difficult first anniversary of his life and death. We are praying that as we share the ways Will has impacted the lives of others that God would be glorified and others would be pointed to Him.
After Will passed, there were a lot of things that I expected. I expected to experience crippling grief. I expected to tear up or start all out sobbing at random times. I expected to miss him and wish he were here. I expected to have awkward conversations and have to help people who don’t know what to say feel at ease. I expected to be angry at times, to question why God didn’t just heal my son when I know He had the power to. I expected to get looks of pity and be avoided. I expected that I would never be the same because part of me died with Will. There are three things I didn’t expect - the fear, the thoughts and the happiness.
First the fear. Before our babies went to the hospital and we were faced with the reality of loosing them I had never really experienced true fear. I was a pretty fearless child and young adult. As a child I remember walking up the stairs in the dark before my brother in case there was a spider or "boogie man." My mom said I was never scared on rides like The Haunted Mansion or the Dinosaur ride at Disney World and in fact they tried to scare me but couldn't. I would pretty much try anything too. I went horseback riding, wake boarding and snowboarding, snorkeling and whitewater kayaking and running down every trail I could find. I was a diver and have done thousands of flips and twists off a three meter spring board. I drove too fast (and have lots of speeding tickets to prove it) and I was always willing to jump off the cliff or take the road less travelled (literally and figuratively). I never really experienced fear until I had a child. Then I got really cautious really fast. I was scared my baby would stop breathing in his sleep or get sick if I took him to the store or pinch his finger in the high chair tray. I feared that my child would fall on the playground and skin his knee or tumble down the slide. When they were learning to walk I was scared they would fall and hit their head. My oldest daughter has breath-holding spells and the first time she did that I was completely terrified. Sometimes I would read about secondary drowning or a child who unexpectedly was diagnosed with a terminal illness or a tragic accident that could have been avoided if only the child was buckled into their carseat correctly. We all have fears as parents but all those things that I read about, the real fear of losing a child, seemed like something that only happens to other people. I would sometimes put myself in their shoes and I was constantly playing out “what if this happened to my child” in my head but I never actually thought any of those scenarios would happen to my family. It’s just too much to grasp especially when your children are healthy and safe. I’m also not really an extreme worrier, but I am cautious and diligent about looking for ways to prevent accidents. I still cut my five year old’s grapes in half because I’m scared he will choke and I have a bottle of hand sanitizer around every corner but I never really thought one of my children would die, it just was unfathomable.
Now that it’s happened, I have a whole new outlook. The worst fear of any parent, losing a beloved and cherished child, has happened to us. There is literally nothing in this world that could happen to me that would be any worse. I shouldn’t be scared of anything - I have experienced the absolute worst fear I have ever had and ever will have. But I am scared. I am scared it could happen again. It doesn’t seem unfathomable anymore because it happened, I know what it feels like. So now my caution and diligence has been turned up to full anxiety mode. I am thinking not just about how to prevent the accident but about every worst case scenario, determined that we will not lose another one. Eating, swimming, sleeping, driving, bike riding and even simply playing have all become potentially catastrophic events that could lead to death. I promise that I can tell you how any activity could lead to the loss of my child - even if it sounds totally insane it seems like it could really happen in my mind. A virus took the life of my child and not some rare, intense virus, but one that nearly everyone gets in their lifetime. Life is fragile.
The side effect of fear is that it sucks all the joy out of any situation. I have to work hard to find a healthy balance. I have to be able to enjoy taking my children to the pool without letting the anxiety of them drowning take over. My children have to eat and I can’t throw every meal into a blender to prevent them from choking. I watch them, I cut their food into appropriate sized bites and try not to panic when my two year old shovels a whole bowl of food into her mouth. I have a hard time with things that might seem small - letting my child play at a friend’s house, dropping my son off at school, riding bikes in our street and even grocery shopping because everything could turn into a tragedy. I work hard to not let the fear take over because it's not fair to my children and not healthy for me.
Something else I didn’t expect was that I find myself thinking some crazy thoughts, mostly making space for Will in our lives. Thinking to myself where he would be if he were here this very moment. Maybe we are going to the pool and I’ll think to myself what I would do if Will were here, what order I would put his sunscreen on in relation to his siblings and where he would sit while we ate lunch and how I would hold him in the sling when Caroline was in the float and let them take turns. Or I’ll be feeding Caroline and imagine if his high chair were next to her and how I would feed them alternating bites (two spoons, of course). Or sometimes Caroline will be upset because she is tired or needs a diaper change or is hungry and I will plan in my head how I would handle it if Will was also upset. How I would comfort both or feed both or change both or get them both down for a nap. How I would load four children into the car instead of three, how I would bathe four (boys together then girls together perhaps?), how I would take the twins to their doctor’s appointments or where they would sit when we watched their siblings play outside. When I catch myself thinking Iike this I first feel so sad that he isn’t here, even if I’m making room for him in a chaotic moment, I wish so badly he was here to make it even more chaotic - I know that sounds crazy but it’s true. Then I think about how if a psychiatrist knew what was going on in my head they would probably diagnosis me with something because of how insane it is to plan for someone who will never be here. I’m not even sure why I do it. Maybe it’s because I had been thinking about how I would coordinate our days with twins for months before they were born. Maybe it’s because I was so excited to have both babies together, to see their relationship grow as they grew that I just still think of Caroline as a “they” instead of a “she.” Maybe it’s just to take the pain of him not being here away for a tiny moment and imagine our life as it is supposed to be.
The third thing I didn’t expect is to be happy, especially not so soon. I will never be the same, I will never be fully whole because part of me is gone. But I have an amazing family, wonderful children and I have had so many joyful days and happy moments even though Will hasn’t been a part of them. I have been listening to Kenny Chesney’s new album, “Songs for the Saints,” since it came out last week and there is one song that he sings with Jimmy Buffet and I alway think about how it perfectly describes grief. It says, “And now I must confess/ I could use some rest/ I can't run at this pace very long/ Yes, it's quite insane/ I think it hurts my brain/ But it cleans me out and then I can go on.” I can only grieve, grieve hard, for so long. I can’t constantly be sad, crying and weeping for my baby boy. Times where I tear up or get that sad pit in my stomach because I drive by the hospital or wish I could hold him the way I hold Caroline, those little moments happen multiple times a day, but they pass and don't take much out of me. But then there are times where I am just uncontrollably sobbing, wanting with every part of me to have my baby, that’s what I can’t do constantly - I can't run that pace for very long. But if I have those times of extreme sadness then I can move forward, be happy and go on until the next one hits. I know I should probably be finding comfort in something other than a Kenny Chesney song and I know the song isn’t even about grief, but I connected it to the way grief seems to come in and out. It’s always there a little bit, I think it always will be but it’s those times of letting myself fully feel sadness that allow me to go on and experience joy, contentment and happiness. I'm sure there will be more of the unexpected as we move further from Will’s last day on Earth, but for now I am thankful for these things that I didn’t see coming. I am thankful that with increased fear comes increased gratitude. I am thankful that even though Will is not here I can still include him in our days by simply thinking about him. And I am thankful that I can be happy, enjoy my family and experience joy in all the things that God intended to be joyful.
I didn't really expect to experience true happiness, especially not this soon after Will's passing. Part of me even felt guilty the first time I was happy because what kind of mother could be happy when one of her children was gone? However this summer brought a lot of unexpected joy, which, obviously, is good, as I played with my children and watched them create memories together. That's not to say there hasn't been a lot of sadness and a lot of tears and a lot of missing Will, but there has been a lot of happiness, a lot of contentment and a lot of joy as well.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!