Why Having a Sibling With a Disability Is a Gift


My relationship with my little brother is different than most, yet very much the same. I was 5 years old when I became a big sister, filled with all the hope and love that comes with a new baby in the family. I was so eager to play with him, help feed him, and even change diapers. I was so excited, I ordered everyone to call me “little mama.”

As my brother grew, he didn’t hit his developmental milestones, and at the age of 3 he was diagnosed with Fragile X syndrome. This forced us all to become advocates for my brother and the disability community as a whole.

We went to national Fragile X syndrome conferences and learned all the ins and outs of the disorder, including the symptoms found in carriers, as my mom and I both carry the gene. We learned about the medical side of the disorder, how it is a sex-linked gene that causes a protein in the brain not to be produced, or produced in limited amounts, based on the number of “CGG repeats” found on the Fragile X gene. Carriers have an increased number of repeats, while those affected have a much larger number.

The most important part of the conferences was meeting other families impacted by Fragile X syndrome, including a sibling’s session. Unfortunately, the majority of siblings that attended were several years younger (a big difference if you’re an adolescent and they are young children), and I don’t think the sessions had the desired impact on me. I always wished there were sibling support groups, even online, that I could share my experience with.

Most of the siblings had similar relationships as my brother and I have. I am fiercely protective of my brother, for one thing. There is a website called PostSecret that had a card that read, “I judge my friends by how they treat my little brother.” That perfectly describes how I have always felt. Fortunately, I have had amazing friends who have always treated him well.

My brother has been a “typical” brother in that he’s always been protective of me too. He gets mad at the people who hurt me and will quietly cuss at them when he thinks my parents can’t hear. He also loves the things I love. My cat was living with him and my parents for a short time and ran away. My brother was the one who discovered he was back and grabbed him up from the front porch quickly. My mom recounts often my brother’s victorious pronouncement that he had returned, and my brother had caught him.

We have always gotten along well. We have always played and laughed together and have never been mean or vindictive towards each other. Some siblings may rough house or bully each other, all in a good-natured way, but all my brother and I do is try to make each other laugh. Who can make who laugh harder is the goal of most of our interactions.

Though there are some parts of the “typical” sibling relationship we don’t have, my brother will always be the best person I know, and I am blessed beyond belief to be his older sister. Regardless of the challenges he has faced, he has overcome and exceeded all expectations. I am proud of my brother and love our excellent relationship. We’ve never argued (though playfully bickered to the point our parents threatened to “turn this car around”), but enrich our relationship with laughter and love. Fragile X made my brother who he is, and I would never have him be any other way.

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