A Doctor’s 3 Words Reassured Me When I Questioned If My Son Has Too Much Therapy
My son’s neurologist has always been one of his greatest cheerleaders. I will never forget what she said to me that made me realize she is also one of mine.
Our son has PMM2-CDG (also known as congenital disorder of glycosylation type 1a), a rare genetic condition that affects him from his head to his toes. He has a myriad of secondary issues that are a result of his primary diagnosis.
At an appointment with his neurologist, we were catching up and going through his day. We went over his weekly private therapy schedule and early intervention home visits. She asked me what we do at home, and I proceeded to tell her all he does to increase his strength and cognition. I told her he was standing in his stander for close to an hour and a half, tolerating the Bronco for about 25 minutes, sitting in a floor sitter and holding his head up for an entire episode of “Bubble Guppies” (thank you, Nickelodeon!), wearing wrist weights for part of the day, laying on a wedge, looking at books and even turning pages, choosing objects when asked to, and so much more. I told her we would soon be heading across the country for him to have intensive therapy for four weeks where he’ll have 80 hours of therapy.
She kept writing her notes on her paper as I sighed and said, “I know it’s a lot, poor kid.”
She lifted her head and looked me right in the face and said, “No. Lucky kid.”
She continued to say how lucky he is that he is being pushed to achieve more, pushed to accomplish all that he can. She said we have a wonderful team of specialists, and we are doing an extraordinary job ensuring he achieves his full potential.
Before this conversation, I’m not sure I would have used the term “lucky” when it comes to our son. Not lucky to eventually have no cerebellum left, heart, kidney and liver abnormalities, a blood disorder, hearing loss, vision issues, extremely low muscle tone, hospitalizations from a common cold and so much more.
He may not have been “lucky” to inherit a rare metabolic condition, but he certainly is lucky to be ours.
That moment, those three small words, made me realize not only does his neurologist believe in him but she believes in me, too. There are so many days when I question myself as a parent of a child with special needs. There are times when I wonder if I’m doing enough and there are moments when I question if I’m doing too much. I research therapies, look for new ways to help our son with communication or strength, and vow to try no matter what.
No one is telling us he can’t or won’t, so we will continue to believe he will. And as luck would have it, he has a mom who will never, ever give up.
Follow this journey on Team Christopher S.
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