Navigating the Challenges of Raising a Medically Fragile Child

  At the young age of 27, my three-month-old baby was diagnosed with a rare and fatal brain disorder known as Canavan Disease. This was a shock to us. We didn't know anything about this disease or that it even existed. It's not even well-known to medical professionals; I always have to educate people about my son. I want to share some of my experiences caring for a sick child in hopes others don't feel so alone. I know I did, alone and isolated from the world!

We were in a cramped hospital room surrounded by medical students and doctors in white coats, having barely slept the previous night. Exhausted and anxious, we awaited the news from the doctors. The doctor sat across from us, her face devoid of any smile or expression. With utmost seriousness, she said, "The MRI showed progression of your baby's disease from the last scan. We have found that Jaxson has a leukodystrophy; these babies don't live past their first birthday," she said. Her demeanor was completely lacking in empathy. Imagine hearing such news if it were your child for the first time. My entire body went numb as I tried to comprehend her words. So... are you saying my baby is going to die? She confirmed yes. With a room full of students, this news was given to me with an audience. Was that necessary? No, absolutely not. My stomach was in knots, and tears streamed down my face. We were frozen trying to process this news. We had countless questions... How could this happen? What was our life going to look like? Was there any hope for our son? My world was turned upside down and inside out. The intense physical pain from this horrific news was indescribable. Our hearts were shattered, and the shock was settling in. Our lives had forever changed on that day.

The truth is, raising a medically fragile son has been the hardest journey of my life. Waiting for your child to pass away is the hardest road you will ever have to go down, in my opinion. When you're in it, you're in it, and you can't see beyond anything else. It consumes you: the sadness, the grief, the loss, the worry. At the same time, you can't imagine loving anyone more. You love them so much it kills you, literally. A piece of you is forever gone, but eventually, a new you is reborn. A new perspective you had no idea was out there. As a young woman, I had no idea life could get this hard! I was not prepared for the hardships ahead. No one could possibly be prepared for what we were about to go through. My dad told me from the beginning that it's going to be a hard road to go down, and he was right! I will say this though: I no longer cared about material things, fitting in, or being perfect. I no longer cared about what this world thought of us or what we should be. All I cared about was saving my child and enjoying every second I had with him. Being in the moment day by day, hour by hour, and minute by minute. Time slows down, and you are able to be present with your child, with your grief. You spend so much time wondering when it will be your last. You get clarity and perspective on what really matters in life. All you want to do is make every second count, every smile, every laugh. You want to freeze time. With this new reality also comes anxiety and pain you never knew existed. Paralyzed, wondering when the last moment will be when I no longer see my child, no longer get to hold him, and no longer get his physical body in this life.

It consumed me, taking up everything within me. I asked myself, is there light and darkness on this journey? Absolutely. Can you have glimpses of joy and moments of pure ecstasy? Yes! This journey has stretched me, strengthened me, challenged me, and changed me. It gave me a spiritual experience like no other. Jax's spirit is innocent and pure. You feel nothing but love in his presence. I have also watched him suffer and struggle in his life, and it almost killed me. Light and dark haunted me day by day. My advice would be, if you're going through this, do your best to have more good days; through the pain, try to enjoy it, make memories, focus on the tiny milestones, be patient with yourself, love yourself, and make time for yourself. Take care of you! I couldn't emphasize this more. The more you take care of yourself, the better person you can be for your loved ones, I promise!

Our life looked very different from everyone else's. From doctor visits to hospital stays, medications multiple times daily, feeding tubes, medical equipment, emergency runs to the hospital, surgeries, therapists, nurses, and so on... To dark days, depression, and anxiety, our life was anything but normal. Everything was hard, and going anywhere felt impossible. When Jax finally got his wheelchair, I would strap it down to the back of my car. I was so excited for this, but it was a lot of work. In the winter, this was very challenging; every day felt hard! I stayed home a lot because it felt easier. In the wintertime, it was scary taking him anywhere because we thought it meant a trip to the hospital. It's easy to feel overwhelmed with life. So I hid from the world and even family and friends. I became very isolated and alone. This was the loneliest time of my life. I felt even more alone when I was around people, though. No one understood my life or what I was feeling on a daily basis. Did I have family and friends? Yes, but I felt like no one understood or cared to understand. Everyone was living their normal lives, and my life was much more complicated! It was easy for me to feel angry with life! All I wanted was to raise a healthy child and do all the things parents look forward to.

I would wake up in the middle of the night to Jax screaming as if he's in severe pain. His body rigid, his legs kick repeatedly. His face was bright red, and he is overheating! He's got another fever. I quickly place him in a cool bath to lower his temperature. My heart races, and my anxiety skyrockets. Was that a seizure? What just happened? Not knowing what was going on with my baby, it must be the progression of his disease. This is what the doctors had warned me about. Was I going to wake up one morning and find my baby dead? This haunted me for years. He continued to wake up through the night screaming. I did the best I could to make him comfortable and to ease his pain. This continued for several years. What's happening to my baby? I contact the doctor to describe Jax's condition. They say it's common for children with neurological issues and that there's nothing we can do. Jax's first three years were like this. He would cry and scream for hours all day. As new parents, we were clueless, constantly fearful of his future, extremely stressed, and always on high alert. I barely slept during those years, and my stress levels were off the charts. Life felt overwhelming and unfair. I was filled with anger. Why does everyone else I know get healthy kids, but I don't? Constantly comparing our life to others, our life felt so hard. Appointment after appointment, therapist after therapist, and no one could help us. I felt exhausted, depleted, and hopeless...

One morning began as usual; I had Jax in his swing, and he seemed content. Suddenly, he turned completely blue. I took him out of the swing and held him. He was stiff as a board, and half of his face began twitching. In a full panic, I picked up the phone and called 911. They said an ambulance was on the way, and I hung up. Jax had a grand mal seizure at 18 months old. It was the scariest thing I had seen so far. On the way to the hospital in Salt Lake, because no other hospital could handle his severe medical conditions, I sat in the back of the ambulance more terrified than ever. I thought this was the beginning of a downhill journey. My baby was going to die soon. Jax was sleeping peacefully during the ride. Once checked in, they ran all the tests and said there was nothing they could do. It was just the progression of his disease. We watched him with his kicking motions and moans, as if breathing was difficult. I held him for hours, trying to calm him, but nothing worked. I told the doctors I feared something bad would happen. They looked at me and said Jax wouldn't live much longer; all you can do is go home and love your baby... I left the hospital feeling hopeless and depressed, not wanting to live anymore. I thought someone might as well put a bullet in my head. Jax ended up in the hospital eight different times after this in just three years. Each time for different reasons, it's best described as his disease progressing and his symptoms getting worse. Each time with the same news, "go home and love your baby; he doesn't have much longer to live," the doctors would say... In three short years, we had grieved our son passing away so many times. We were consumed with grief; daily I would say that was our new normal.

Then the unimaginable occurred. Jax was in a terrible accident and nearly died. By God's grace, he survived. I was overjoyed and thankful Jax was still with us. I realized then life can always be worse. We almost lost him tragically. I couldn't bear this misery any longer; something had to change. I needed to climb out of this dark place. It wasn't easy, and it took longer than I had hoped. We chose to ignore the doctors and start living, and that's what we did! This was a turning point for us. We needed to move forward—not move on, but forward. We wanted to give Jax the best life we could and start living instead of sitting around and waiting for him to die. We finally began to live and make memories. That's what made all the difference, we found happiness in the darkest corners of our lives. We found a new purpose for life! 2019 ended up being one of the best years of my life. Life was our biggest teacher that year.