I have and always will be close to my sister. This is just a small setback in our long journey of sisterhood.
When my sister had her first jaw surgery I was in the seventh grade and 12 years old. Jaelin was 15 and in the ninth grade. I looked up to everything she was and did. I remember the night before her surgery sitting on her big bed singing show tunes together. Although I’d never tell her this, I loved being in her room and sleeping in the bed next to her. It was like a sleepover every night. We sang all the time- I pulled out my flip phone and recorded my sister’s “big solo” on karaoke. Suddenly, I just started crying. All of the sudden the thought came into my head “what if she can never sing again?” I remember this moment like it was yesterday. My sister hugged me and assured me that everything would be alright.
The day of the surgery I lost my best friend. I saw her in the hospital and cried. She lost a lot of weight and her hair started falling out. I watched my once joyful, bubbly, outgoing sister become scared. I watched her body shake in pain and her once bright eyes and can do attitude become dull, dark nights. My hero, who wanted to become a doctor and save lives, had mostly lost her own.
From a little sister’s point of view, my sister has a rare disease that’s guaranteed not to kill her but keeps her alive and makes her suffer instead. My sister has always been my hero, but it wasn’t until now that I’ve realized just how strong she’s been. Her life has gone by and most days she wasn’t allowed by her body to enjoy it. Being in pain and mostly bed ridden, Jaelin still graduated high school (at 15 I might add!), managed our city pool, performed in theater, went to conferences of leadership around the U.S., graduated college, and was STILL the best big sister she could be.
If you saw Jaelin out at the store or in public, you would not ever guess that it takes her almost four hours to get ready. She wakes up, takes her pills, showers, and then needs at least an hour to recuperate. Her body aches from standing so long and her jaw hurts from the pressure of the water. When you have a chronic illness, getting in the car, driving, getting dressed, putting on make-up, etc. are all exhausting tasks. When we go out and my sister can’t do something because she’s too tired or her face hurts too much, I feel so mad. Not at my sister, but at the world. Why her? Why someone who just wants to help? Why make her, my sister, suffer? I wouldn’t wish this pain on my worst enemy, but I want to punch the doctor in the face who did this to her. I want him to walk in her shoes for a day.
My sister is bubbly around people, she’s always smiling and cracking jokes. But when we get on the car or finally reach home tears well in her eyes and the reality of her situation hits us again. Her face hurts. My heart breaks a little every day.
I just graduated high school. If my sister weren’t sick we would have had two years of high school together! I wish we could have had that. In school, it was hard to summarize what happened to her. No one understood and eventually I just started saying, “She’s just really sick.” It was hard for me to deal with, because no one was going through anything similar. I felt very alone at times. People have relatives with cancer or Alzheimer’s, but no one had a situation close to mine. Even when my friends would try to comfort me, it felt uncomfortable and forced. I mostly kept quiet about it.
Whether my sister was asleep or not, I’d still kiss her goodbye every morning before school. I’d wake her up after school and we would talk. Sometimes her eyes would start to close and I would just put the blanket over her and tiptoe out. I sometimes open the door to her room and watch her sleep. She looks so peaceful, but I know she’s having bad dreams and even in her sleep the pain is unbearable.
People always said (and still say) “I’ll pray for her” or “God bless her”. She doesn’t need a prayer; she needs her life back. She needs someone or something that can help. It’s almost offensive to me, like “Oh, silly me! I never thought to pray for her!” I’ve been praying every night for almost six years. God obviously isn’t listening.
Jaelin is bossy and sassy some days. We fight like sisters and laugh like best friends. She is also funny, smart, beautiful, kind, giving, and strong. I have no doubt my sister will accomplish whatever she puts her mind to. She never loses a battle and I guarantee she will not lose this one. If she told me tomorrow she was running for president, when she turned thirty-five, I know her victory speech would be playing everywhere. My sister is special not because of these past five years, but because of who she is and who she has striven to be. You’re doin’ good sis!
Thank you for everything Jaelin.
I LOVE YOU SISSY!
And I love you too McKenna! If any of you are interested, you can follow my sister on her personal Twitter account here: She is also an amazing activist for the LGBTQ community, and has a separate Twitter account for that as well that you can follow here: Pride4Change.
Please let me and my sister know what you thought of this post by leaving a comment down below! We would also love to hear what you think the hardest part of you having a chronic illness is for your siblings, or if there are any siblings reading this, what the hardest part is for you!