‘I became a mother at five years old’

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‘I became a mother at five years old’

What it’s like to have a sibling born with Down’s syndrome

In 2001, my little brother Joey was born, with baby blue eyes, a big heart, and an extra chromosome. He has Down Syndrome: a genetic disorder characterized by distinct physical features and cognitive delay. I don’t know how I’d react to hearing that if I didn’t grow up with him, but I do know that Down Syndrome falls into the category of ‘disability,’ and with that categorization comes the imminent preconceived notion of the term.

I can guarantee you that Joey, like anyone else with a disability, is so much more than what you think.

That being said, it was admittedly difficult growing up with him. Before he came along, we were a nuclear family:  mom, dad, son, and daughter living in a nice neighborhood with a big yard and a cute dog.

My older brother and I were always pretty low maintenance; we were happy sitting in front of the TV or running around outside or playing Pokemon together. Raising Joey was different; raising Joey was an “all hands on deck” kind of deal.

Training to be normal

Along with the normal responsibilities of an older sister, I was part of a rigorous training program to combat his disability from an early age. My family attended the Institutes for the Achievement of Human Potential in Philadelphia, a haven for families with brain injured children, where we learned how to physically and mentally support Joey’s growth and development.

We would go multiple times a year, to review his progress and add more tasks to his daily regimen, which included physical exercises and math, spelling, and speech lessons multiple times a day.

Of all the life changing experiences I’ve had, his entrance into our family has probably shaped my life more than anything.

It taught me discipline, patience, and a wealth of other values, but most importantly it taught me an unconditional type of love.

Becoming a mother

When Joey was two and I was 9, my mother started working again at her 9-5 job in NYC. After school every day, I took it upon myself to fill in for her. He had just begun to walk, and he still needed to be watched at all times. When he started to run, he had to be watched even more closely (I consider this one of the most exhausting times in my life).

When he started to speak in words that were unintelligible, I listened. I spent so much time with him that I eventually learned the language of his world, and I was proud to translate his babbling to my parents.

As I grew up I became increasingly aware of the responsibility I had. For a while, I thought it was normal for everyone in the family to have their attention devoted to the youngest child. He was the baby, after all; it made sense! It became habit for me to be constantly worrying about him. Would he be able to speak clearly, and in full sentences? Would he get made fun of? Would he ever be able to understand things like life and birth and death? Would he feel angry, sad, alone? Would he understand why?

It was a terrifying feeling that I can only put into words now in comparison to motherhood. He’s a part of me. I would without a doubt die for him. And I can never let anything happen to him, because I need him more than he needs me.

14 years old and loving life

But as I grew, so did he. When I left for college, he was 13, and hilarious, and happy, and independent. After years of thinking about the future, the future finally came. I realized that he could grow up, he would grow up, and I had to let him. Now, he’s going to be in 8th grade. He has a ‘girlfriend’ and shaves once a week. He’s on the track team and takes saxophone lessons and plays video games with his friends.

It’s with a maternal pride and sadness that I look at him every day and wish he was a baby again. Thankfully, his annoying preteen attitude reminds me that he’s my little bro, and he always will be.

Even though I hold on to his hugs just a little too long.

@TheTab