Letter from a Sibling

What is it like living with a sibling with a disability?

That question above has a lot of different possible answers. And to be honest, I cannot and will never give anyone a full answer to that question. There are so many things in my life that I can say to possibly answer that question, but I know for a fact that any attempt at a answer will vary from day to day.

I will first introduce myself, I am Gianna Mosca, the writer of this particular blog post, I am also Kayla’s oldest sister. I was around six when Kayla was diagnosed at age two with Rett Syndrome. Since I was so young when Kayla was diagnosed, I don’t know a life any other way, and that certainly has made my life so far, interesting.

All her life, Kayla has always been a happy, beautiful, strong girl, even if she can’t show it “normally”. Any, societally, “normal” child would voice their opinions, or show their emotions through actions, which are two things Kayla is unable to do fully. Instead, I have learned to watch her eyes, eyebrows, and small body movements to read her. When I tell someone some reaction I have gotten from Kayla, it is common to be curious as to how I can tell. I know because I have studied and observed her in general for 11 years, and now know more about her as a person than ever.

There are a couple things that are most difficult about having a sibling with a disability. One of the biggest things is the amount of attention and detail that is constantly placed on Kayla. By no means am I saying that I do not get enough attention or want more attention. I am simply saying that as soon as Kayla makes a sound or a movement of discontentment or discomfort, everyone drops everything to aid her. It can be a bother at times, and can greatly disrupt the peace of things in any environment. Another thing about Kayla is that she can be very vocal at times. That consists of crying, whining, screaming, or even just making noise overall. When it is a happy noise, that great, but when it is angry, annoyed, or overall upset, you better fix it or run.

That’s the thing about Kayla, I won’t say Rett specifically because this is just my experience, but Kayla is very touch-and-go. That’s what can make Kayla difficult. She can be in a certain mood one, then you turn away and come back and she is in a whole different mindset. For a majority of the time at home, she is switching between happy and content, or upset and/or annoyed. It’s not like she can “help it” per say, but it still is frustrating.

I know that being a sibling of a disabled child has it challenges and hardships, but there is always the good side of things. Such as being able to connect with families like ours, and being able to see so many kids happy while doing something new in their lives, like surfing or skiing. I have learned that I have to just take what happens and run with it. Keep growing with the things that are constantly being thrown my way. Building up with what is given, makes life livable for our family, especially with Kayla. I have come to realize my life is just different than anyone would expect, and I find that to not be a fully good nor bad thing.

~Gianna~