When My Son With Spinal Muscular Atrophy Asks the Hard Questions
Sometimes when my son asks me questions, I can’t always answer them. He might be a little kid, but he has big thoughts on his mind. I guess that’s what happens when a person has a disability like spinal muscular atrophy that they are struggling to come to terms with or understand. Take the other day, for instance, my son fired off the following list of questions starting with, “Mommy, can I walk one day? I really wish that I could walk with my legs.”
At which point, I felt my throat constrict and eyes well with tears, but before I could respond, my terminally ill and physically disabled son continued throwing out more hard questions like, “Can I have medicine to make me feel better? Can the doctors give it to me?”
“Can I have friends? I want someone to play with me.”
“Can I grow up to be big like Daddy?”
“When I am big, can I live on my own? I will visit you.”
“Can I go to the fountain to make wishes? The other one didn’t work.”
“Can I go to Heaven? Will you be there too?”
“Can I keep my G-tube button? It’s mine. I love it.”
“Can I stop doing treatments? I don’t like the pokies in my arm.”
“Can I have a cat?”
“Can I still get presents for Christmas even if I was naughty? Well, Santa will bring me some anyway. He always does.”
“Can I be a teenager like my sister soon?”
“Can you stay with me forever?”
“Can you pick me up and carry me to my wheelchair? Not Daddy. He did it wrong.”
“I have itches. Can you scratch my head? My arms don’t work anymore. I can’t lift them. Are they broken?”
“Are you so proud of me?”
“Mommy, can you hear me? Are you listening?”
“Mommy, can you just give me a kiss? Then you can go. I want to relax and watch my show on my iPad.”
I may not have all the answers to my son’s questions, or I may not have the ones that he wants to hear, but I pray that my love will be enough to help him feel safe and secure during these times of great uncertainty. Because life is hard for everyone, even kids, but from my experience, having people in my life that care about what I am going through has made the hard times more bearable. I hope my son will feel the same way, one day.
AUTHOR BIO: Lori Butierries is a full-time caregiver to two children with disabilities. She uses her life experiences and the medical knowledge she gained from serving as a Hospital Corpsman in the United States Navy to help others facing similar hardships. Lori is an author for The Havok Journal, an official columnist for AwareNow Magazine, and a contributor to The Mighty. Likewise, other news sites like MSN and Yahoo! News have also republished select articles Lori has written. Lori's writing extends to children's literature. Her debut picture book, GIFT FROM GOD, was self-published at the beginning of 2021 and placed as a finalist in two categories in the 2021 Next Generation Indie Book Awards. Lori aims to use her writing to educate others about, advocate for, and dismantle negative stereotypes regarding disability, mental health, and the military/veterans community by talking about these topics with people of all ages.
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