Mom,
I'm not exactly sure where to start, but thank you. Thank you for being the person who will drive me all over Illinois for doctors, for being the person to sleep body draped over my hospital bed, for being the person to keep pushing until doctors agreed to see me. Thank you for supporting me in my struggle with rare illnesses, and thank you for simply being you.
Parents of children with rare conditions seem to never catch a break. They serve as glorified chauffeurs from doctor appointment to doctor appointment, they serve as patient advocates at the appointments, and they serve as a shoulder to cry on when the doctor has no answers.
Never can they be sick or have a life of their own because their life revolves around their sick child. I know that my mom cannot even commit to lunch with her friends because she never knows when she will have to drop everything to grab me from school. This makes us children feel guilty for our parents' lack of social lives, but we will forever be grateful for the sacrifices you make for us.
You throw money, tireless hours, and tears at us as we try to find new treatments and diagnoses. I am currently being diagnosed with new conditions left and right, and I know that you, mom, never catch a break. Every day involves calling a different doctor, juggling my medications, and keeping communication with me to make sure that I am okay. I know that it cannot be easy, and I may not seem appreciative at times, but I am.
You will probably never understand what I go through every day, but we fight my illness together. You do not personally have my crummy joints, pain, fatigue (or at least to my degree), but on some days it can sure seem like you do. When I cry, you cry. When I hurt, you hurt. And, when I am angry at the world, you are too.
I know that I have already said it, but thank you so much mom and every other parent out there that takes care of us children with chronic illnesses. Our lives are hard enough already, so your profound support and love is the only thing that keeps us going some days.
Thank you to my mom for being the amazing woman she is. Not every person would have dropped everything to search for a diagnosis and research as much as humanly possible about rare conditions. On my rough nights, I may say that you don't understand, but I know that on some level you do because we fight my illness together.
To other parents of children with chronic illnesses, thank you for keeping your kids as healthy as they can be. It may seem overwhelming at times, but you are the reason that those of us with chronic illnesses still have some semblance of a future to look forward to. So, keep being the amazing parents you are, and us children will try to stay as put together as we can for another day.
Sincerely,
Your chronically ill daughter
