By Maya, Sienna’s sibling
What do you feel is the coolest thing about your sister/brother?
The coolest thing about my little sister, Siena, is that she has the best memory. Siena will remember the tiniest details of an event so long, like it was yesterday. Her memory also makes her so helpful when reminding you of all the things you need to do. There are countless times when our parents, brother, grandparents, myself, and anyone else asks Siena for help remembering something because we all know she will never forget it.
What is one of the hardest things about having a sibling with special needs?
The hardest thing about having a sibling with special needs is connecting with each other. Siena and I are born 4 years apart but with CDLS, she is mentally a lot younger. Sometimes, it feels difficult for us to bond and be as close.
Has the Foundation helped you or your family? If so, how?
The Foundation has been immensely helpful at building the CDLS community. A few years ago, my family was able to host a CDLS Southwest family event and it was amazing. We got to share stories, bond, and create new memories together. It truly unified the CDLS family community.
How do you explain CdLS to your friends?
I explain CDLS as a genetic disability that can affect people intellectually, physically, and behaviorally. Although it is a rare disorder, it is still one that needs paying attention to.
How has your life been impacted by your sister’s/brother’s diagnosis? If so, how?
My sister’s diagnosis occurred a few months after her birth, her having CDLS has also been apart of our lives. Her symptoms from CDLS are categorized as mild but still have given us some scares. However, I don’t view her diagnosis as a hinderance but rather a gift. Siena has been given such amazing abilities from her CDLS; her memory, attention to detail, beautiful thick hair, and brightest smile.
If you could tell the world one thing about your sister/brother and CdLS, what would it be?
The one thing I would tell the world about my sister is that she has the most beautiful crooked smile ever. I have never in my life seen a happier, my joyful, and loving smile than hers. It truly lights up the room and you can’t help but smile either.
What are some things you like to do with your sister/brother?
Siena and I absolutely love to drive around, get food, and go shopping. She used to absolutely hate it when I forced her to come along with me, but now she loves to shop. We love to listen to our favorite music together and sing it out loud with the windows rolled down in the car.
What is it like being a sibling to someone that has special needs?
It is definitely hard growing up with a sibling with special needs. The term glass child fits perfectly. There are many times growing up where I felt like a background character in my family’s lives. Having that feeling also made me then feel guilty for feeling that way. Guilty that I was making my feelings a bigger deal when my sister as a genetic condition. However, where I am at now in life, where my sister is relying more on me and reaching out to me more, has definitely filled that gap of feeling important when I was a child growing up. She asks me for advice, talks to me about school, complains about mom and dad to me. It’s cycle that every glass child goes through but this feeling won’t last forever, because eventually your sibling with special needs will start to grow more and need you more.
Anything else you would like to add?
I can’t speak for Siena, but I would never in a million lifetimes change who she is. CDLS had presented her with many challenges in life and she has faced them head on. She has proven that she is not defined by CDLS and will be whoever she wants to be and do whatever she wants to do. She has truly grown into a mini me and I absolutely love it. A few years ago, I could’ve never imagined Siena and I would have this bond that we do now. I am truly thankful for the years we weren’t as close because it allowed us to grow as our own selves which only adds to the bond we have now.
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