When I Realized I Didn't Need to Explain My Son's Rare Disorder to His Brother


Our 5-year-old has no idea his little brother has a rare genetic condition. He is likely unaware of the term “special needs.” He doesn’t seem to realize that his younger brother is not “typical.” He likely thinks that a stander in the middle of the living room is “normal.” He may think a high chair is only used for messy play. He might think that gait trainers are how children learn to walk. He understands feeding tubes are for providing nutrition to his little brother and never questions why he doesn’t eat orally.

The other day as we were packing up to see one of our many specialists, I heard him say under his breath, “He sure goes to the doctor a lot, I just don’t know why.”

a young boy standing beside his brother in a stroller
Melissa’s sons.

So many thoughts went through my mind. Do I tell him that his brother was born with a condition? Do I tell him that his little brother’s body doesn’t work exactly like his? Do I tell him that his brother is developmentally delayed? I have always told him that the doctors just need to check on his little brother, but that has been the extent of our conversations. I have never spelled out his brother’s disorder and everything that goes along with it. As I packed up I kept wondering if he needed more.

Does he need to know more?

After all of these thoughts you know what I did? Nothing.

I smiled at him as I picked up his 3-year-old brother from laying on the floor and said, “Let’s go.”

Our life may not be the norm, but it’s our normal. It isn’t abnormal to have a platform swing hanging from our basement ceiling. It is common to go to private therapy daily. It’s our life to see a number of specialists that I need fingers and toes to count. Our life is ours. Our life is our normal.

Our 5-year-old loves and adores his little brother the way he is. He doesn’t see him as a 3-year-old who cannot sit, talk, crawl, walk, or clap. He sees him as his little brother who he can make smile and laugh simply by giggling in his face or playing peek-a-boo. He turns the light on in the car at night because he knows his little brother doesn’t like the dark. When his brother’s feeding pump beeps he shouts to me so I know to go check on it. When he hears his little brother cough he yells to me from the other room and asks if I need a towel in case he has thrown up. He is a warrior for him and he doesn’t even realize it.

There will come a day when I will explain more. But for now, I will just let him simply love his little brother.

mother with her two young sons dressed warmly
Melissa with her sons.

Follow this journey on Team Christopher S.

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