I know it’s been a while. I think of you everyday. There’s so much I want to tell you.
I have great friends now. We’re changing the world – seriously. I know you were worried about the friends I used to have. The toxic ones are gone and the healthy friends I do have couldn’t be more understanding or supportive. You would love them all, but you love everyone.
I’m doing well in school too! I’m taking four AP classes (I finished the semester with a 4.5 GPA!!) and doing ACT prep. It’s pretty stressful, but keeps me busy for sure.
Sick Chicks has gone farther than I ever imagined it would. I hope you know – this is all because of you and for you. I’m so grateful you connected Dr. Stone and I. She is such a compassionate physician who truly understands the challenges our community faces. She has been there for me and we’ve been a solid support system for each other after…
I hope I’m making you proud. I’ve started to think WWAD (what would Amelia do?) before every decision…probably something I should’ve done a while ago, would’ve kept me out of a lot of trouble.
I was such a scared kid in Children’s Institute, then you the cool older girl came in as my roommate, showed me the ropes, and wanted to hang out with me. I felt so special. I remember spending Christmas together and New Years too. I didn’t want to leave even though I could go back to the hotel with my parents for a few hours. I just wanted to stay with you.
You showed me how to handle being sick. You showed me I could be okay. I could smile, I could laugh. You showed me the power of my voice that Christmas. It’s the most special, cherished gift I’ve ever received.
I’m so blessed we got that time in California. You were able to come just as I was starting high school, another significant time in my life. I remember it was supposed to be a surprise, but you couldn’t keep it a secret. I’m so glad you didn’t. I loved planning too much. I loved going to the beach and crossing “putting feet in the Pacific Ocean” off of your bucket list. At the end we both knew it was the last time we would ever see each other. It was utterly heartbreaking. But, my last memory of you in person was when you were tube/line free for a few precious minutes, dancing, laughing and hugging me.
I remember when we’d freak the nurses out in Children’s Institute because our vital signs would be the exact same. Low temp, high heart rate, and low blood pressure. Classic signs of dysautonomia. You had the diagnosis, I didn’t. I was used to being told my symptoms were "just anxiety" and I needed "to get over it". It wasn’t until a few months later I was officially a part of the club. You had a feeling, but since I didn’t mention any symptoms, you didn’t want to say anything. We went through my Ehlers Danlos diagnosis together as well. You were there for me when my lungs started to not function well and helped me through being bipap dependent for a while, something you had already gone through yourself. God, I’ll miss that support. But, you’re still here. You’re with me when I go to the beach. When I see a classic movie like “Singing in the Rain”. When I go to synagogue. When I eat chips at Chipotle. When I play card games. When I touch the charm on my necklace. When I’m working on my own bucket list.
You’ll never be truly gone because you live on in the lives of everyone you touched while here, and you touched so many of us.
I never got to thank you for the pillowcase, it’s so fitting that I go to sleep with you and wake up with you just like when we first met at Children’s Institute.
I love you.
I will keep fighting for you.
Your little sis,
Please go to UMDF to learn more about Mitochondrial Disease and it's affects.