Every day that has gone by without Will has been hard. Every day is sad. Every day is one day further from the last time I held him, but also one day closer to when I get to see him again. Easter is our first holiday without Will. I supposed the loss of any person is somehow magnified at each holiday. We don’t have any memories of Easter with Will, just dreams of Easter with him that will never happen. I have a little blue seersucker outfit that he was going to wear. His big brother has matching shorts and his sisters have matching pink seersucker dresses. I have his Easter basket, it is canvas with blue bunny ears and matches his siblings’ Easter baskets. I have a bib with a blue truck filled with Easter eggs that says “My First Easter” that he was supposed to wear. It’s all tucked away with the rest of his things. Today is sad for us because we are missing our baby boy and wishing that he was here to share his first Easter with us. But then I imagine the way that Will is celebrating Easter in heaven compared to how we are celebrating here on Earth. Will gets to see our resurrected Jesus. He has been in the presence of his risen Savior for 26 days now. He has had a perfect body for 26 days, he is no longer sick or suffering or experiencing any pain. Because of Easter, because Jesus is alive, Will gets to spend eternity with Christ. Because of Easter we can receive God’s free gift of eternal life. Because of Easter, we can have hope even in the most tragic and devastating moments of our lives. Easter is a declaration of who Christ is - He is the atoning sacrifice for all who believe in Him, He is perfect, He is holy, He is risen!
The first few days and weeks after we took our babies to the ER were some of the most traumatic. We had no idea why our babies were sick and we didn’t know what was going to happen to them. We were in an environment that we had never experienced before and there were so many unknowns. We didn’t know any of the medical terms, we didn't understand the lab results or machine settings. We didn’t know what to look for on monitors - what is a normal blood pressure, heart rate, oxygen level or respiratory rate for a baby? We didn’t know anyone. We didn’t know who was a doctor, nurse, respiratory therapist, social worker or specialist. I remember talking to specialists on our first day in the PICU and not even fully knowing what their speciality was. I will admit to being naive and clueless to the medical world, but I thought I at least knew something. I didn’t, I knew nothing.
I have never experienced that intense kind of helplessness before. It’s this kind of helplessness where you are utterly paralyzed. I literally could’t even put a thought together, much less ask a question or have a semi-meaningful conversation with a doctor or nurse. I couldn’t do anything because I didn't know what to do. I remember doctors coming in and I knew that I should be asking questions, I should be wanting them to explain more, I should be trying to understand but instead all I could do was cry. Monitors would go off, machines would beep and lights would flash and I should probably have made sure someone was coming quickly or tried to figure out what the beeping meant or at the very least I should have watched to see what happened but I just cried.
Every three hours I would go to a separate room to pump and usually I would just cry or stare at the wall or try to put just one coherent thought together. Sometimes I would search for anything distracting and I started listening to sermons, or at least clips from sermons, on my phone. One of those times I came across part of a sermon preached by our pastor, Joby Martin. At the end of the sermon he quoted an except from another sermon called “That’s My King” by S.M. Lockridge. It is a declaration of who God is. I found comfort in hearing who I am putting my trust in and who is in control of my babies’ lives. I listened to it multiple times a day because it reminded me to do the only thing I could do when I didn’t know what to do - declare Christ. It reminded me what to do when I felt helpless - declare Christ. It reminded me what to do when I was hopeless, sad, scared, anxious, heartbroken - declare Christ. It reminded me what to do every day, in every joyful, sorrowful, happy, painful or broken situation - declare Christ. So I listened to this clip probably hundreds of times during those first few weeks, sometimes on repeat, to declare Christ to myself. I would pull a chair up to the side of Will’s bed, hold his hand and listen to it. I would pump and listen to it. I would sit on the couch, watching Caroline and listen to it. I listened to it because it reminded me of who my God is. If my God is truly all of these things, then I can trust Him. I can trust that He is in control, He is sovereign and He is good. So when I could literally do nothing else, this is what I did. I trusted that God is good and I trusted that He would be glorified in and through my babies.
There was a turning point for me, not really a precise moment, but there was a change overtime. The first few days and weeks I was hopeless and helpless, literally paralyzed. You could find me sitting in one of my babies’ hospital rooms, crying. That’s all I had. But when Christ is declared then hope enters and everything changes. With perspective comes great hope, hope that enabled me to do something. At first it was small, like think, just one thought that makes sense. But eventually holding on to the truth of who God is gave me the ability to do something helpful. I could trust God. I could trust that God is good. I could trust that God is in control. I could trust in God’s love. So then comes a new perspective - God is good and I can trust Him, He already knows the outcome and I can do nothing to change it. So I prayed for what I wanted but also that God’s will would be done. I prayed that my babies would be healed. I prayed for a miracle. I prayed that they would stay on this Earth for long, healthy, full lives. I wanted them so badly and I prayed that God would just let me have them. But I also prayed for God’s will and trusted Him. If God’s plan was to take both, or one, of my children, then I had to trust that doing that would bring Him the most glory. Clinging on to the promise that God is good no matter what gave me the ability to have hope.
The numbness, the helplessness, never wore off - it still hasn’t and I don’t know that it ever fully will, but trusting God gave me the ability to enjoy my babies instead of just weep over them. There were many happy moments with Will that I may not have experienced if I had remained completely paralyzed and hopeless. He brought so much joy, laughter and happiness that I might have missed. I had great hope that he would fully recover but I also knew if he didn’t, if God decided that Will’s time of Earth was over, that I had the gift of knowing that he would be with Christ. God loves Will infinitely more than I do, God created him and God gave him each breath that he took. There is great hope in that. There is great hope in a God who can be fully trusted. There is great hope in a God who is good no matter what and that is why we celebrate Easter. We celebrate Easter because God created a way for us to be reconciled to Him. He gave us a way through His Son, Jesus. And because God gave His Son so that we could have eternal life, my son is celebrating Easter today in the most beautiful way possible, with His risen Savior. Happy first Easter, my sweet Will!
This sweet bunny and bird are emboridered on one of the outfits I got for Will before he was born. He wore it a few times in the hospital and I always imagined that I would put it on him today. The last time I put him in this outfit was March 6, the night he passed away. Taylor and I dressed him in this gown before someone from the funeral home came to get his body. Caroline has a matching one in pink. She is wearing it today for Easter in honor of her brother.
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!