“My sister Cate has a genetic mutation called NAA10 Deficiency. This mutation led to her severe special needs. NAA10 Deficiency is a newly discovered genetic mutation, and its full effects on development are still being studied. It is believed to ‘dim the lights’ on neurotransmitters, and not allow cells to communicate with each other. Cate does not walk, talk, or do anything on her own without assistance. She is in full-time care.
Despite all her challenges, Cate has a sassy, happy personality and can make sounds to express her emotions. Cate and I are very close in our own special way, and we have defined our version of a sister relationship. My parents have always referred to me as ‘Cate’s Big Little Sister.’ I am Cate’s little sister, but due to her special needs, I have assumed the role of being her older sister too.
When I was little, I never thought anything was different about Cate. Cate’s special needs were all I have ever known, so it was completely normal to me. I honestly never thought Cate was different until I was in first grade. I can clearly remember talking to a group of my friends in our classroom about our families. Everyone was talking about playing and speaking with their siblings; it was then that I realized that Cate did not do any of that with me. Talking to my peers made me realize Cate was different, and this made me ask my parents a lot of questions.
My parents explained that Cate’s brain worked differently than mine. I have always been a curious kid, and this explanation was not enough for me. I asked a lot of questions because I wanted to learn as much as I could about Cate. In my elementary school, we always did a school-wide presentation called the Learning Fair. That year, I did my project on Cate.
I proudly explained to my first-grade class why Cate was different and told them how she went about her day. I even brought in my little American Girl Doll wheelchair as a prop. I was excited I had something interesting and new to talk and learn about. Our relationship has always been really strong, but growing up with Cate has not always been easy.
Throughout my entire life, I always thought my parents had the answers to everything. However, being Cate’s sister was something they knew nothing about. My parents do not have a sibling with special needs. The only way you can understand what it’s like is if you have one too. For a long time, I felt really alone and thought no one understood how I felt. I felt like I lost my sister. All I wanted was for Cate to be typical, and it hurt.
I had to be independent early because of Cate. In the end, it has been beneficial, but it was hard at the time. If I wanted something and I didn’t want to wait, I had to learn how to do it myself.
My mom tells me a story of when I was less than a year old, and I would get upset about not getting my sippy cup quickly enough while my mom got Cate on the school bus. One day, she handled me the sippy cup and I learned how to drink it myself. Living with Cate when I was very little was not a challenge for me, but when I got into elementary school, I struggled more and more with confusing feelings.
Throughout my time in elementary school, Cate was in and out of the hospital a lot. She was having major surgeries and was sick often. I felt lost in the mix of Cate’s world, and for an 8-year-old, that was hard. My parents were gone at the hospital with Cate, and I was left alone with my grandparents. We all had to figure out what type of system worked for us, and it took time.
When Cate had major hip surgery, my parents were at the hospital for 6 days straight. I didn’t see them one time, and it was hard on me. I missed them so much. After they returned home, I told them what we were doing wasn’t working, and we made a new system.
For Cate’s next surgery, she was in the hospital for over a month. My parents alternated time at the hospital with Cate so one of them was always home with me. I struggled with figuring out my feelings, but I learned expressing them helped me feel better.
Even as I figured things out, I still struggled with others. The simplest of things like telling people about my sister became a challenge. I did not know what to do. I thought people would think I was weird, and that Cate was contagious because she was different. I struggled a lot with these feelings in elementary school, but as I got older, I started to get the hang of things. I learned what worked for me and what did not, and my outlook on my life changed. I could either think about all ways I wanted my life to be different, or I could embrace the difference. I chose to look at life in an alternative way.
My family focuses on the good in our lives and tries to go with the flow. We could choose to not go out because of Cate’s special needs, but we make the conscious decision to live our life to the fullest. Embracing my life was a game-changer. I stopped comparing my life to everyone else’s and realized all the good I had.
Cate has taught my entire family what it is like to define your own normal. We’ve had to make a lot of adjustments to figure things out, but we are all so close because of our circumstances.
The greatest thing we learned is that communication is key. Expressing how we feel and talking about what works is why our family is so happy. Our life is not society’s norm, and I would not want it any other way. I look at the world in such a unique light.
People think having a sibling with special needs is sad, but it is not. A unique way of life gives you an alternative way to look at the world; it might just take a few extra steps to get things done.
If Cate did not have special needs, I would be a completely different person. She has taught me so much and made me into the person I am today. I chose to love my life, and I cannot express into words how much I do.
Cate has also taught me that something as small as a laugh or a smile are victories. I have learned that I need to focus on what others can do rather than what they can’t, and even the same thing goes for myself. I look for the little things in life and I appreciate and recognize things that most would overlook.
I celebrate the moments where Cate even just looked at me and smiled or pressed her talker button. I treasure someone smiling at me on the running trail or someone holding the door for me at Wawa. Cate has shown me that the little things are the big things. Life is flying by and looking for the little things has made me so much more grounded and appreciative of the present.
Instead of a whole list of things I wanted to be different, there is only one thing I would change about my life.
Over the years I have realized there are little to no resources for siblings of people with special needs, and I am working to create that change. In the past, I went to sibling support groups and they were just not for me. It was always one big pity party, and that is not what I wanted or needed. I love my life and I was looking for a resource to provide me with the support to keep loving my life. When I could not find that resource, I made my own. In early July of this year, I created Big Little Sister Blog to share my experiences and advice for the special needs community.
From a young age, I had to be my own support system. Big Little Sister Blog is a resource I would’ve wanted to have. My message to other siblings is that your feelings are completely valid, and you are not alone. I write about the struggles and obstacles I have faced, and how I have handled them and found the positives in each situation. My goal with this blog is to keep it as real as possible because life is not always hearts and flowers. It is important to acknowledge that not everything is perfect.
Cate is my biggest inspiration and the reason I am who I am today. It’s time I speak out about how she has changed my life.”
This story was submitted to Love What Matters by Alex of Downington, Pennsylvania. You can follow her journey on Instagram and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories like this:
‘I carry him. I know it looks silly. His toes dangle past my knees. But still, I carry his awkwardly long body against my own.’: Special needs mom says ‘he carries me, too’
‘Mommy, he called me a monster.’: Special needs mom urges ‘take 10 minutes to teach your child about differences’ before schools reopen
Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.