Losing a Child With the Same Disorder as My Son


I know my son lives with a life-threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially when we lose another of our community.

While processing another loss, our son’s disorder PMM2-CDG, sneaks up on me like a dementor and whispers in my ear I can take him too. Uncontrollable tears ensue. While this dementor looms over me I can’t help but feel helpless and afraid. I begin to feel terrified of my child catching a cold while shopping at the grocery store. I anxiously think about our next inevitable hospitalization. I start to worry more and more about making the decision to send him to preschool. More than anything I want him to learn and grow, but above all I want him here. Alive and healthy, looking up at me with his ever-so-charming grin.

Along with the fear there’s anger. I am so angry our life is one of unknowns, worry and loss. Life is unfair, and I understand there’s no way to get around that. I also know living a life with a medically complex child is not for the faint of heart. I am so angry at our CDG dementor that I want to kick and scream at him, but as I do this my fists go right through him. Fighting him is futile. No matter how hard I try, nothing changes, he stands strong and tall sneering at me. He refuses to leave, reminding me we aren’t immune to him.

Sadness, fear and anger overwhelm me, but that’s not all I feel.

Admitting my relief is one of the hardest statements to make. I want to take those words back, but I wouldn’t be being honest with myself. My tears fall on my son, and relief washes over me. He is here. I can feel his clammy hand on my face and kiss his soft cheeks. I try to stuff the relief down inside me because I know that guilt is soon to follow. I feel immense guilt that I am relieved. I am holding my son, gazing into his eyes while there is another family saying goodbye to their angel. As I rock him, our dementor lingers close to me, never straying far. I shed tears for another loss, put myself in the shoes of the parents and sob.

Through the tears I start to feel courageous. I can’t let the dementor get the best of me. I can’t let my fear take over. I pick myself up and remind him we are strong and we will persevere no matter how much of a bully he is. I remind him I won’t let my fear control me, and because of him we will make a difference. I remind him I will take each day as a gift and know there are no guarantees. We will make changes because of him. We will become better because of him. I thank him for teaching me to love deeper and live fuller. I stand tall and show him this is a fight I will fight, and win or lose, our fight, my son’s fight, will be worth it. With this, he starts to retreat. No longer is he taunting me with the ultimate fear of losing my son.

As our dementor slowly takes his place in the back of my mind I am reminded life is so precious. Life is short, and no matter the journey, make it worth it. Give a few more hugs and kisses. Eat ice cream in bed. Share your gifts, whatever they may be. And never, ever, take anything for granted.

Follow this journey on Christopher’s Journey with Courage Determination and Grace.


Find this story helpful? Share it with someone you care about.


Related to PMM2-CDG

When Choosing a Feeding Tube Felt Like Failing My Son

I will never forget our first appointment with our son’s gastroenterologist. Our son was 9 months old and barely over 9 pounds. We went there with the intention of discussing placing a feeding tube for our son. Our efforts to help him gain weight were futile. We tried adding calories. We tried more meals. We [...]

When I Wonder What the Future Holds for My Son With Down Syndrome

As I spin you in my arms dancing around the living room I look at your beautiful face and you look up smiling at me. It’s such a sweet moment, the kind of moment you want to bottle up and keep forever. As we dance I watch your tiny little hand rest in mine and [...]

I Wasn’t Diagnosed With Dyslexia Until My Final Year in College

I was diagnosed as dyslexic at 20 years old and in my final year at college. I’ve always generally succeeded in education but struggled the more I progressed. That’s not exactly unusual. I had weaknesses like most people — spelling and math in particular — but my mom just made sure we worked extra hard [...]

When I Find Reminders of My Child's Illness Hidden Among Everyday Belongings

While I’ve been home and getting stuck into some housework I have been coming across many things hidden away and forgotten about from my daughter Bella’s infant years as well from her most recent — from the frequent trips to the hospital week after week, month after month throughout the years. Hospital ID bands from [...]