When people are put in challenging, difficult or unknown situations, they either rise to the occasion or crumble in the face of adversity. I often crumbled and was paralyzed by fear, doubt and heartbreak when our twins were in the PICU, but I am grateful for the times when God morphed me into the person I needed to be in order to handle our tragedy. I am not the person I was when Will was in the hospital, but I am thankful for the ways in which I changed in order to be the very best for Will. Everything I did was out of love for Caroline and Will and I learned that love can show up in many different ways. For me, it often showed up as tenacity, urgency, resourcefulness and protectiveness.
It was March 2, 2018. I took Caroline to a follow-up appointment with the neurologist at 9am. Everything was fine. I took Will’s bother to mother-son bingo at his school that night at 6pm. I could barely focus. Taylor was with our girls at home and my parents went to be with Will. They were texting and telling me his numbers because I kept asking. His blood pressure was low. He was uncomfortable and upset. The doctor didn’t know if he would make it through the night. His cardiac function was getting worse. We saw his foot twitching. Everything was suddenly and extremely uncertain, he was declining and I felt the world crashing down around me. After Caroline came home, I usually didn’t visit Will at night, just during the day. Caroline was only two months old and needed me at night. This night was different. This night I went back. It was late, I was exhausted and drained but I had to see my baby. There was nothing in the entire universe that could have kept me from getting to Will that night. Not just this time, but many times, I was determined and purposeful in a way that nothing could have stopped me. Whether it was insisting on having someone from Will’s family with him almost 24-hours per day when nurses reassured us over and over that he was fine there without us or demanding that doctors come to recheck, retry or reevaluate, I was tireless in my efforts. Being Will’s Mommy gave me a strength of purpose that I have never experienced before. I developed an extreme persistence and determination, a strong sense of tenacity in everything I did.
I have always been energetic and a hard worker. I don’t much like wasted time and I tend to always have a lot of projects going on at once and can get a lot done quickly. I am also a perfectionist and I like things done right. Some people probably get annoyed by it, but I think I was naturally wired to live with a nagging sense of urgency to get things done, complete tasks and move through life creating and doing. At least that’s what I thought. I didn’t know what urgency meant until I had two babies dying in the hospital. I think I became a different person for three months. I only cared about my children and getting to them. I didn’t care about sleeping or eating or exercising. I didn’t care if I cut you off getting onto the highway or breezed past a familiar face without saying hi on my way to the hospital. I didn’t respond to texts, calls and emails or really communicate with anyone because that just took precious time away from my babies. And I didn’t even care. Normally I would be so worried about what other people would think if I didn’t wave hi or respond to their text in a timely manner. Normally I would be embarrassed if someone thought I was rude, unresponsive or uncaring. But it didn’t matter because the only thing that did matter was being with my babies and fighting for them to live. When it was my turn to go to the hospital I was basically running out the door, breaking multiple traffic laws and racing through the parking garage, down the hallway, up the elevator and into Will’s room at maximum speed. His room was in the back corner of the PICU, so I passed a whole hallway of rooms on my way to his, often pushing my way through a group of doctors doing rounds or passing by people without so much as a glance. Even on the days when Will was stable I still got to him as quickly as possible, as if every second not with him was being wasted. I developed an extreme sense of urgency, more than ever before.
I have always been willing to figure things out on my own. I tend to look for the answer myself before asking some else to find it for me. I’m not against asking for help, but I like trying to do things on my own. To be brutally honest and a tad bit arrogant, this is mostly because I think I can do most things better myself than having someone else do it for me. I’m sorry if that hurts anyone’s feelings, but I share that to say that I feel I have always been relatively resourceful. At least that's what I thought. During the first few weeks that Caroline and Will were in the PICU, I didn't know how to be involved in their care. I didn't know what to do or what to ask or what to say, so I would just sit on the couch in their room and cry. Soon I realized that if my babies were going to fight to live then I better be fighting for them too and I figured it out. I knew none of the medical terms, medications or technology used in the PICU but I figured it out. I didn't know much about the human body, how to read blood work or understand test results but I figured it out. I asked questions, so many questions. I made lists everywhere. I called friends who were doctors and nurses and asked them every question I could think of, taking up way too much of their time but figuring out what I needed to know. I googled and researched even though everyone told me not to because of all the scary and false information I might find. One day, while Will was in surgery, I went down to the records office and insisted that they print over 2,000 pages of Will's hospital records. This was on top of the 900 pages I asked to be printed for Caroline. I then proceeded to read them, scouring them for details I had missed and questions I needed answered. I took the report from every echo he ever had and researched every single term, graphed his results and brought them to one of the staffing meetings. I'm sure everyone thought I was insane but in a world that I knew nothing about I learned everything I could as fast as I could because I had to, there was no other option. I learned to be resourceful and use what I had to get what I needed for Will.
During the first few weeks our twins were in the PICU, one of my mom’s nurse friends told her how important it was to spend time with the babies - talk to them, touch them and just create a loving environment as best as we could in the midst of all the chaos to let them know we were there. I really took that to heart. Even before we could hold Will I would sit at his bedside and hold his hand or touch his head and talk to him. I got really protective of his environment. I know it might sounds silly, he was a baby and I know that he didn’t understand what was going on or what people were saying, but it mattered to me. I wanted to keep his space positive and peaceful. No hysterical meltdowns, no negative words, no one telling him that he was going to die or what he couldn’t do. It’s all I could do for him. I couldn’t make his heart function better, I couldn’t make his kidney’s work and I couldn’t fix his body. I couldn’t take care of him. He needed doctors and nurses and therapists to take care of him. All I could do was love him and protect him. Sometimes that meant saying no or making people upset. I didn’t care then and I don’t care now. All I cared about was Will. I learned to protect Will from people who we found to be untrustworthy or irresponsible. On December 13, 2017, Will went on ECMO and came off within 24-hours. He had a brain bleed. He was swollen all over his body because his kidneys had shut down. His heart function was poor. A doctor came to us and said that Will was in a vegetative state. He told us that Will was brain dead and offered us the option to remove all his support so that he could die. He was wrong. Will was not brain dead. Will’s brain stem was completely in tact and while low, he did have brain activity being recorded on the EEG. His brain activity steadily increased until ten weeks later when he had a seizure. A few months later the same doctor told us that Will’s kidney’s would never work again. He said that the nephrologist told him with 100% certainty that Will’s kidneys would never function on their own. Again, he was wrong. The nephrologist said that while highly unlikely, he would never say with certainty that Will’s kidneys would not start working on their own. We still had a small sliver of hope as well as other options to look into. It wasn’t only this doctor, but others too that I developed an extreme resistance to. It wasn’t simply poor bedside manner or an uncaring attitude, it was flippant, irresponsible and disrespectful comments that made him and others untrustworthy. There was the surgeon who described graphically to me how Will would bleed to death on his operating table if he attempted a certain surgery. It was the calloused, persnickety doctor in the hallway laughing when Will urinated and claiming that it wasn’t real. I have always had a strong intuition and although I do tend to see the best in people, I can pretty much call who someone is after only a few interactions, or just one extremely telling one. I usually know who to trust and not trust not because of anything they say or do, just because I know. So when I encountered people like this, I guarded Will from them with a passion. I would literally block the door and make these types of doctors talk to me before entering Will's room because I knew they were going to come in and be negative. I didn’t want Will to hear that. I met a new surgeon and refused to let anyone but him operate on Will. I relied on doctors and nurses I trusted and didn't pay much attention to the others. I was more protective than I have ever been over anyone or anything in my entire life.
Being Will’s Mommy has made me more brave, bold and confident. I am sure of what God has called me to do and I will not take “no” for an answer from this world. I will always and forever wish that Will was still here and that I had never learned any of these lessons and had never grown into this new person I am today. I would willingly and gladly take the less bold, less brave and less confident version of myself if I could have Will back. Since I don’t have that choice, I will choose to make something beautiful out of this tragedy, drawing the strength and courage to do so from the strongest and most courageous person I have ever known - my son, Will.
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!