What it’s like growing up with a sister who has a disability: Part 1

Have you ever wondered what it's like for your non-disabled child to have a sibling with a disability?

Do you wonder what their experience is like? If they feel like they miss out on things? Or if they feel like they don’t get enough attention? Or if they wish their sibling was normal?

Well, I want to tell you my experience.

I can’t speak for every sibling out there, but I can tell you my story, and I bet many siblings have similar experiences. I think some of my viewpoints may pleasantly surprise you.

Now, because I have so many experiences and stories to tell, I’ve decided to break this post into three parts. Today I’m going to start at the very beginning, from the day my sister first acquired her disability and through the entire six months she was in the hospital.

But as I said, I’m not telling her story, I’m telling mine. Here we go…

When I was seven years old, the doctors found my four year old sister, Morgan, had a tumor the size of a golf ball in her brain.

They said they needed to remove it immediately, but it wasn’t cancerous. Most likely, she’d walk out of the hospital two weeks later with a penchant for clumsiness, so I wasn’t too worried.

Unfortunately, surgery didn’t go quite as planned. When I walked into my sister’s hospital room the next day, she was almost unrecognizable. She had multiple tubes coming out of her mouth and nose, more lines and tubes connected to the rest of her, she was surrounded by beeping monitors and machines, and she wasn’t conscious

I was overwhelmed and scared.

A child life specialist invited me away from all the craziness. She calmly explained that Morgan was in a coma. She wouldn’t wake up soon, but she could still feel us and hear what we said. She had a picture of Morgan so she could explain what each and every single line and tube did and why it was attached to her, so my seven year old brain could finally understand what was going on. She calmed me down with her soothing voice and reassuring words.

So I went back to my sister’s room, with most of my apprehension gone, and I held my sister’s hand and talked to her.

While that first day was a little bit scary, the hospital quickly became my home away from home.

Up the elevator, through the double doors to the right, I would skip along just so, with my long braid swinging side to side behind me. In the mini fridge at the nurses station they kept those tiny 8oz cans of Coca Cola and I would grab one any time I got the chance. I loved drawing fun designs on my sister’s window and then later trying to find them from outside.

Actually, creating art is what I remember most from this time.

I had this little craft book that showed you how to make tiny animals out of pipe cleaners. I always loved making pigs, which are my sister’s favorite animal. I made so many of those pipe cleaner animals that I eventually figured out how to make animals that weren’t even in the book.

I learned how to knit. I made one of those loop rugs with a bright yellow sunflower in the middle, and it lived beside my twin bed for years. I also learned how to sew by hand. At the time I had no idea that I would eventually design and sew my own prom dress (luckily I learned how to use a sewing machine by then.)

At one point there was a girl around my age in the room next-door and we became quick friends. It was around Christmas time and she taught me how to wrap presents to look like Christmas crackers using a toilet paper roll!

I also loved helping out in any way I could, whether it was in the playroom or with Morgan’s therapies.

The child life specialists always had some new fun activity or craft in the playroom, so I would help them set it up, make examples, and even help other kids who were in the hospital to make their crafts.

Caitlin, at 7 years old, moving Morgan's arm, while Morgan lays in her hospital bed

Morgan's therapists always had the best games, and it was so rewarding to me to feel like I was really helping my sister. My mom has a picture of me from this time doing range of motion exercises on her. I guess it’s no wonder that I’m a pediatric physical therapist today.

There were also some exciting times while Morgan was in the hospital!

One time we snuck in our golden retriever so my sister could see him, and I remember thinking it was so cool my parents were actually breaking the rules.

I watched the Fourth of July fireworks from the roof of the hospital while perched on my uncle’s shoulders. The best part? I got to be interviewed on the news! I told them my favorite fireworks were the sparkly waterfall ones.

For Morgan’s birthday, I helped her open all her gifts like the good big sister I am. One of the gifts was a Big Billy Bass Fish that would dance and sing “Don’t Worry Be Happy.” My parents thought it might motivate her to use her left hand. We played it so many times I can still hear the song in my head to this day. “Ooh, ooh ooh ooh oo-ooh ooh oo-ooh oo-ooh oo-ooh. Don’t worry. Ooh oo-ooh oo-ooh oo-ooh. Be happy. Ooh oo-ooh oo-ooh. Don’t worry be happy.”

Since my parents didn’t leave the hospital much, I had a lot of different people stay with me during those 6 months.

My great aunt stayed with me for a while and she was the one that taught me how to sew. We made quilted trivets that my mom still has to this day.

My grandma, however, stayed with me longer than anyone else.

One of my most memorable stories was when my grandma and I had to get nail polish remover.

We had painted my sister’s nails a beautiful bright pink (her favorite), but she had to go in for a procedure, and the doctors needed it removed so they could monitor her oxygen saturation.

So my Grandma and I were tasked to fetch the nail polish remover. But that day, my Grandma had found such a great parking spot that she simply couldn’t give it up, which meant we were walking.

Normally that wouldn’t be much of a problem, except for the fact that it was 110 degrees outside. So off we hiked to the closest store we could find. We searched and searched, no nail polish. So we hiked to the next store where we luckily found a bottle. But now at this point we were about a mile away from the hospital! We start trudging back in the oppressive heat.

We weren’t in the best part of town, so when a huge brown van with dark windows suddenly pulled in front of us and blocked our path, we were a bit frightened!

The window slowly rolled down and a voice barked, “What are you two doing out here in this heat?!”

Luckily we recognized the voice. It was my mom’s friend who was coming to visit! So we hopped into the van and into the respite of the AC. We rode the rest of the way back to the hospital where we got Morgan’s nail polish off in time for the procedure.

At the time it wasn’t the funniest story, but today it is one of my favorites to tell.

At this point you may be wondering, do I have any negative memories from this time?

Yes I do.

I remember sitting on my neighbor’s couch the day of Morgan’s first surgery, staring out the window into the dark of night, asking my neighbors when my parents were going to call. It had been twelve hours and they still hadn’t called. I knew something was wrong, but had no idea what it was.

I also remember my sister having an emergency procedure in her room without anesthesia. She was in a coma, but from what the child life specialists told me, she could still feel and hear. I was so worried she could feel everything they were doing and couldn’t do anything about it.

But do you want to know my absolute worst memory from this time?

Writing my 3rd grade news reports.

No joke. They were the worst. I could never get them right, so I always had to rewrite them multiple times. I would cry each and every time I was sent back to rewrite them because they weren’t good enough and I didn’t know how to make them better.

You might assume that my sister’s time in the hospital would be scarring and tragic for me. But honestly those 3rd grade news reports were worse. Most of my memories of the hospital include art projects, helping the child life specialists and therapists, hanging out with my Grandma, and drinking those tiny cans of Coca Cola; all happy memories.

Those news reports were much more scarring to me than anything that happened with my sister in the hospital.

Being a child at the time, I was just wrapped up in my own world of whimsy and imagination.

While all the grown-ups were worried, I was creating fun things and simply being a kid. Yeah, my sister was in the hospital, but that quickly became the new normal, and I just ran with it the best I could, bringing joy and whimsy along the way.

The truth is, your non-disabled child’s view of their sibling and events surrounding their disability may be vastly different than your own.

I know my parent’s experiences in the hospital were very different from mine. And they still are today. I don’t see my sister's disability as tragic and upsetting as they do. And the things I do see as upsetting, especially people’s perceptions of my sister and her disability, don’t seem to phase them as much.

Ask your non-disabled child how they see their sibling and what they remember. It may surprise you.

I hope it’s helpful for you to hear my experiences as a sibling. If you really enjoyed something in this post or have any insights, please let me know in the comments section below!

Look for the next post in this series two weeks from now. I’ll be talking about life after the hospital, throughout most of my school-age years, and whether I felt left out or like I missed out on things.

And if you know of any parents worried about how their non-disabled children are affected by having a sibling with a disability, please use the social buttons below to share this post with them!

And remember, you truly can live a great life with your disabled child!

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