An old friend of mine would occasionally call her child with medical complexities “broken.” I would smile and go along with her, but it always bothered me. I do understand the need to have humor in our lives. I understand that people all cope differently under stress and unusual circumstances. Believe me, our lives need laughter. But I kept thinking of what she said and thought that if she thinks her son is broken she most definitely thinks mine is too.
Our son has a rare genetic condition, congenital disorder of glycosylation (PMM2-CDG). From his head to his toes, he’s affected by his disorder. The list is long, and his needs are great, but I would never call him broken. He may be imperfectly perfect, but not broken.
To me, broken things are tossed aside. Broken things are given away in a pile full of unwanted clothes and household goods. Broken things are thrown in the garbage so new, working things can replace them. Broken things are unwanted. At first, the idea that broken items are not kept is why I felt her comment never settled quite well with me, but when I quickly Googled the definition of broken this is what caught my eye:
“(of a person) having given up all hope; despairing.”
Now this. This is what really struck me. “Given up all hope.” Not. A. Chance. No way. You will never see him give up. I watch him struggle daily to sit and to grasp a toy on the first try, but one thing I never see is him give up. Of course he gets frustrated and cries, occasionally through his entire hour of physical therapy, but he perseveres. When I look into his eyes I see hope. I see determination. He radiates love and joy. There is definitely no despair in him.
Yes, his body doesn’t function like it should and there is absolutely no “fixing” it. We don’t know if he’ll walk or talk, but a great friend once told me, “We won’t know unless we try.” And try we do. We try and we hope.
My sweet boy with the greatest hair and dashing smile is most definitely not broken. To me, he’s imperfectly perfect.
Follow this journey on Team Christopher S.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Melissa is a blogger, advocate for children with special needs, wife and a mother of four great boys: one “bonus” son, sensitive 10 year old, cheeky and smart 7 year old with PMM2-CDG, and a nearly 3 year old who turns life upside down daily. They live in a house where toys and equipment take over every single space. She’s come to love writing to share their struggles as well as triumphs. Melissa is a blogger, advocate for children with special needs, wife and a mother of three great boys: one “bonus” teenager, rambunctious 5-year-old and a 3 year old with PMM2-CDG. They live in a house where toys and equipment take over every single space. She’s come to love writing to share their struggles as well as triumphs.
melissa-schlemmer