Dear Mom and Dad,
I never quite knew how much weight and fear you carried as the parents of a rare disease child. Looking back on it now and having honest conversations with you about it, I now see how much you had to push through to put on a brave face for me and give me a proper childhood, which you did. I can’t even begin to thank you enough for all you have done for me.
Thank you for providing me unconditional love and support from the day I was born. The fear of the unknown started on that day, and you did everything in your power to ensure I was a loved, supported child while you faced that fear.
Thank you for searching the ends of the earth to find my diagnosis. The answers “we don’t know what she has” or “she might just have her own thing” were just not good enough for you. You sought out doctors, far and wide, and looked for answers everywhere you could until one day, 14 years later, we finally got that answer.
Thank you for making the most difficult medical decisions for me when I was too young to understand. As a baby and small child, you were faced with the decisions of whether to operate or not for a disease that didn’t even have a name yet. I now know you carried a lot of weight in those decisions, never knowing if you made the right one since I wasn’t able to make those decisions for myself, and treatments for my undiagnosed disease weren’t yet known.
Thank you for listening to me and allowing me to be involved in my medical care when I was old enough to understand. In my teenage years, you didn’t just make decisions for me, you allowed me to express my concerns and needs and ultimately decide things for myself with your support. When I did need help with those decisions, you were always there to provide that help. I always felt validated and in control.
Thank you for going to every doctor appointment with me and ensuring that I had the best care possible at all the right times.
Thank you for being there for me when I woke up from every surgery and procedure. I never felt alone.
Thank you for always finding a way to add in some fun for every doctor visit, surgery, and medical trip. Some of my favorite memories are the fun activities from our trips out of state for medical treatments. And even locally – I’ll never forget how delicious that lobster ravioli tasted at that little Italian restaurant after my 5-hour MRI that required me to fast all day.
Thank you for giving me as normal of a childhood as possible among the medical treatments and uncertainty. Despite my medical challenges, I still felt like a normal kid growing up.
Thank you for giving me the space to find myself along this journey and grow into my own person whose identity isn’t solely a “patient.”
I never realized how hard it was to raise a child with a rare disease. I wasn’t aware of the complexity of the decisions you had to make. When advocating for rare diseases, it’s important to also talk about the reality of parenting a child with a rare disease, an entirely unique experience with its own hardships. I didn’t know how hard you had to search, investigate, and research to not only get a diagnosis for me but also find the right care all while raising 3 children.
You gave me the best childhood I could have asked for. You carried the weight of these challenges, worries, and fears for me. You did all of this for me. And I can’t even begin to thank you enough.
PeaceLoveHeal 