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Special Needs Families: Brothers

Special Needs Families: Brothers

I looked at my big boy and asked, “Did you just stick your tongue out at him?”

He wasn’t sure how to answer me, but I prompted him to be honest, and he said, “Yes, he was pulling my hair!”

I laughed until I cried.

Ever since our youngest was diagnosed with a rare genetic condition, PMM2 CDG I have grieved the sibling relationship I wanted so badly for them.

They don’t run through the sprinklers together in the summer. They don’t tromp through the snow in the winter eating snow and happily falling backwards to make a snow angel.

They don’t blame each other for messes or mistakes. They don’t play cars or legos or make believe together. They don’t fight.

Our youngest son is globally developmentally delayed.

He is fed with a feeding tube nearly 24 hours a day and is still very much a, “baby”, according to his big brother.

The questions of “when will he be a kid?” are fairly constant in our home.

With daily private therapy he’s making progress, slowly. He is nonverbal but very chatty and has recently learned to tummy scoot to where he wants to go.

Their sibling relationship isn’t what I imagined. I imagined bubble baths together, car races in the basement, and yes, fights.

The scream of “MOM!” coming from the other room to tattle on the other brother for doing something they didn’t like, and the determined footsteps to come and tell me all about the wrongdoing.

All of the things I did with my siblings growing up.

I wanted them to grow up counting on one another.

I wanted them to grow up always having a best friend or at least someone to share, love, fight, and get in a little trouble with.

Before the sticking-out-of-the-tongue incident our youngest had scooted his way to lay next to his brother. And he pulled his hair.

Brothers. I laughed until I cried because here I am worrying that they won’t have the sibling relationship I dreamed of, but yet they may have just had their first fight.

After this incident I realized my ideas of what siblings “should” do needs to be replaced with what they are doing.

They love each other fiercely, my oldest makes up games that his little brother CAN do, and now, they fight.

And that, is something I have waited for for nearly 4 years.

I did have to tell my oldest that sticking out his tongue at his brother isn’t appropriate and tell my youngest not to pull hair, but the entire time my heart was bursting with joy.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Melissa Schlemmer

Meet Our Blogger

Currently I am trying to juggle life with an infant, 7 year old, and a nearly 5 year old with special needs. Life is all kinds of crazy, but we are loving it all. I’m passionate about advocating for our son and sharing our story so other parents realize they aren’t alone in this.

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