Alexis, caring for her sister

My name is Alexis, and I am 11 years old. I have a dog named Lucy and a birdie Zoe. I am a caregiver to my sister Caroline who is 5 years old. She has a condition that has caused her to be in a wheelchair because she can’t walk, can’t talk, and has a port in her stomach to get the food she needs in her system. She has had seizures since the day she was born causing her to be in and out of the hospital. There is no cure for her condition.

I make sure to help my sister in any way she needs. She has a lot of medical equipment for her care. I know where everything is and know how to use it. I feel a bit like a doctor. I also help get her ready for bed every day, take her food to her, and watch her when my parents are cooking. Every day since she was born, I have been by her side; and every day I wish that I could experience a day in her life so she could experience mine.

When I was in school, I would get a lot of anxiety because I would get this sudden feeling like my sister wasn’t okay; like she was having a seizure and I wouldn’t be able to stop crying. The only way I would feel better was once I got a hold of my parents and knew she was okay. While other kids are happy that the day is over, I get sad because that’s another day that I could have spent more time with my sister. I cuddle and talk to her every day when I get home from school.

When my sister got old enough to go to school with me, my Principal would let me leave class to go across the hall and check up on my sister. That made things so much less stressful. When COVID happened, they pulled my sister out of school and I asked to study from home because although I loved seeing my friends, I didn’t want the stress of not being able to check up on her and know she is okay. I also did not want to risk coming home with symptoms.

I am part of the Powerhouse Program at the Young Caregivers Association and this program helps me destress by being able to talk about my day-to-day life with my sister. My pets also help with my anxiety as well. Another thing that helps with my stress is knowing that my parents tell me everything about Caroline’s health whether it is good or bad, I’m comforted in knowing that they are not hiding anything from me.

If I can offer some advice to a caregiver my age, it would be to not think of the dark side of the day. Think of the good side instead, but also don’t hide your emotions.

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