What it’s like growing up with a sister who has a disability: Part 2

Here is Part 2 of my story. If you'd like to catch up on Part 1, you can read it here.

Do you think your non-disabled child ever feels left out? Or like you give all your attention to their sibling? This may be common, but I had a different experience growing up. Here are my stories and experiences:

When my sister came home from the hospital, I got my first taste of how people were going to treat us differently.

We often had people from church come over to bring us meals. I know my mom really appreciated this, and she also enjoyed the company. But me? I preferred my mom’s home cooking. And unfortunately, people from church also brought along comments such as, “I’m so sorry this happened to your family,” “It must be so hard on you,” “You’re such a good big sister,” and the ever-present, “We’re praying for you.”

When people said “You’re such a good big sister,” they weren’t saying it because I had done anything amazing for Morgan. They said it like I was sacrificing something to be around my sister. Like they didn’t believe anyone could ever want to hang out with their disabled sister.

I also understood the intent behind “I’m praying for you,” but anytime anyone says this it’s not because your life is going great. It means you’re in bad shape. It means you need help. It means you need to be saved. Well, I didn’t feel like I was in bad shape! I didn’t feel broken or needing to be saved!

Back then, I actually couldn’t have told you why I didn’t like these comments, I just knew I didn’t. But hearing all of these comments would eventually have a great impact on my life and spur my interest in disability rights issues.

While my sister had come home from the hospital, I actually found a purpose in going back.

As I had helped out in the playrooms for the six months my sister was there, I got to know a lot of people. One of the childlife specialists I became close with also happened to run the Children’s Advisory Board and she invited me to be on it! Most of the kids on the board were actual patients of the hospital, but a few of us were siblings.

The hospital consulted with us on projects, the biggest of which was the opening of a new hospital. Before that, the children’s department had just been two floors of the adult hospital. Now it was going to be its own full-sized hospital! We were consulted on everything from the paint colors on the walls, the food being served in the cafeteria, and the equipment on the playground. We were also front and center at the opening of the new hospital. One of the girls on the advisory board actually got to cut the ribbon!

I had always enjoyed visiting my sister at the hospital, but being a part of the Children’s Advisory Board gave me a new purpose there. It helped me realize that I, as a sibling, could have the power to make good changes in the world.

Even when my sister went back in the hospital unexpectedly, I still felt included, just in a different way.

Since this hospital stay was so unexpected, we hadn’t made plans for anyone to stay at home with me, so I got to stay at my best friend’s house. What an awesome never-ending slumber party!

The best part was I was there for Valentine’s Day. In their family, the tradition is that each kid gets a box of little gifts. And they gave me one too! I felt so special to be welcomed into their family and also get a Valentine’s Day box on such short notice!

I spent a lot of time tagging along to my sister’s therapy sessions, and I occasionally got into mischief.

As I watched Morgan’s therapies, I thought it would be so cool as a grown up to play games with kids all day and help them move better. Morgan’s OT and PT used to fight over whether I was going to follow their path. They liked to show me how cool their activities were and then in the hallway they’d tease each other, “Caitlin’s going to be a PT!” “No, she’s going to be an OT!” Well, it turns out I picked PT.

When we were there I had to find activities to pass the time. The receptionist and I would hang decorations in the hallway. I’d make paper cutouts to fit the season or holiday: snowflakes, hearts, eggs, flowers, popsicles, pool floaties, fall leaves. For a crafty kid, this really played to my strengths.

Out in front of the therapy building there was a wonderful ramp. Morgan has always been a thrill seeker, so on the way out I’d always let go of her wheelchair and yell, “No hands! Weeee!!!!” as Morgan sailed down the ramp. Then I’d catch her before the bottom and turn to follow the sidewalk.

One day I wasn’t quite as cautious as usual and, while I did catch her and turn to the left, her momentum was still going down the ramp and she flipped over! Luckily, she was okay, but I felt so guilty!

However, I’d be lying if I said I’ve never flipped her over in her wheelchair since…like when I was 20 years old…oops! Luckily she only ended up with a small scratch from that one. I’m a careful and cautious person, I swear.

Like all siblings, my sister and I didn’t always get along.

We had a tent trailer that made camping decently accessible for us. One time we took a 2-week trip all the way to Yellowstone and back, and you know what I remember most about that trip?

  1. It snowed. In May.

  2. The theme song to Full House.

My sister watched the Full House DVD’s non-stop that entire trip, for two weeks straight. To this day, I still can’t stand the theme song to Full House. When I was annoyed by things like this, I wasn’t always very nice to her. I wouldn’t have the patience to read her books or help her change the DVD’s in her movie player.

One time in middle school my mom was working, so I was watching my sister and she wouldn’t listen to me. I thought she was being so mean that I ended up calling my mom in tears and she had to come home early.

Our relationship slowly got better through the years, but it significantly improved when I was allowed to be employed by the state as a caregiver. I suddenly had clear guidelines of how to interact with my sister, and I learned how to be much nicer and relate to her. Getting paid was also a highly motivating factor. Being a caregiver immediately changed our relationship for the better and we’ve really had a good relationship ever since.

Although my sister did require a lot of attention from my parents, they still made a huge effort to support me.

In high school, I was in concert band, marching band, and steel drum band. Needless to say, I had A LOT of performances. My family, including my sister, made it to pretty much every single one (although Morgan usually fell asleep before halftime at the football games).

Before our halftime shows, my family would cheer me on as I walked by them towards the warm-up area. I averted my gaze and acted like I didn’t know them. Unfortunately, my friends didn’t see how completely humiliating my family was and would shout, “Hey Caitlin, look! It’s your family!” My parents still don’t let me live that down to this day.

My strongest memories growing up with my family were actually of our vacations. While traveling, I got to see the possibilities of what life with a disability can look like.

One time we decided to take a ski trip to Park City, Utah because they have an awesome adaptive ski program. Morgan loved that she had her own personal guides on the mountain who would let her get out of her sit ski and make snow angels whenever she wanted. This trip really opened my eyes to the world of adaptive sports.

Morgan learning forward from her chair to pet a cat on top of the Acropolis in Athens, Greece. Caitlin stands beside her watching.
Morgan petting cats on top of the Acropolis

In Hawaii I really wanted to try surfing, so we took a lesson with a surf school led by firefighters. While the rest of us had a group lesson, Morgan got her own personal firefighter. Basically Morgan loved having young attractive men all to herself on these trips!

I've also watched my sister pet dolphins in the Bahamas, kayak in open water, pet feral cats on top of the Acropolis in Athens, snorkel with stingrays in the Caribbean, and bobsled down the Olympic track in Whistler.

My sister wasn’t the center of all our family vacations though. My parents really made sure everyone was involved and got to have an opinion.

At some point I decided it would be really fun to try a cruise, but my mom said they’re probably not very accessible and they’re expensive. But I kept talking it up, so she looked into Disney cruises (Morgan loves Disney). We eventually went on a 3-day cruise and my family got hooked! They’ve been on a Disney cruise every single year since that first one. And I was the one who first came up with the idea! As a 14 year old!

As we kept cruising, I asked my mom if we could go on a cruise to Europe. Again, she told me it’s not accessible in Europe and it’s too expensive. However, we eventually gave it a shot and it worked out great!

Seeing Europe on the Disney cruises really let us all enjoy vacation. My sister loved being on the ship and meeting the characters. My parents and I loved seeing famous sites, meeting new people, and learning about the countries we were in. And all of us loved eating amazing food.

This isn’t to say we never had to miss or cancel anything because of my sister’s disability.

One time when we were in Hawaii, we were going on an ATV tour. I was going to ride my own ATV and my sister and parents were going to ride in a larger, multi-seat vehicle. Well, when we arrived we found out that large vehicle had broken down. I really wanted to ride an ATV for the first time, so my family let me go on the tour while they stayed back and ate malasadas (a Hawaiian donut). Even though they didn’t get to go, they still had a good time!

When my sister was first hospitalized we had to cancel our trip on which I was supposed to visit the American Girl Store in Chicago. We never rescheduled it. A few years ago, I was in LA and happened upon an American Girl Store. I thought to myself, “Wow, after all those years of dreaming about this place as a child, I just happen to stumble upon it as an adult.” It was very nostalgic.

Although not everything went perfectly on our trips, I never really felt left out on our vacations.

I never felt like it was just “Morgan’s trip” or that we couldn’t do things because of Morgan. She came along for pretty much every activity and my parents made sure we did things for her too. Everyone got to have choices.

That was a reflection of my whole upbringing. I didn’t feel left out because of my sister’s disability growing up. Actually, I felt like I got to have some pretty cool experiences because of my sister’s disability. I mean, have you ever ridden up the side of the Acropolis in Athens, Greece in a rickety construction access elevator? I have (although I don’t recommend it).

Having a disabled sibling does not mean non-disabled kids have to feel left out. Non-disabled siblings can have pretty great lives with their disabled siblings too.

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