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The Letter I Wish I Could Have Written My Parents When I Was First Diagnosed

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Dear Mommy and Daddy,

I know I may not be what you probably dreamed of, hoped for or expected. I can only imagine the emotions you must be feeling — guilt, fear, confusion and joy all mixed up together, as I entered this world and was whisked away just as fast. You probably have a million questions buzzing in your head. What? How? Why? But don’t let that get in the way of you seeing me as perfect, because I am, despite the body I was born with. My body is not me. My condition is not who I am, and even though in the coming weeks and months and years, you will be infused with a lot of terminology, medical diagnoses, care plans and surgical options, please don’t forget that inside my body, there’s a heart and a soul that needs to know you love me just the way I am.

To be healthy and strong, it will be in my best interest for you to try and fix my body. I know this and I am grateful for that gift. Some of my treatments may be painful and it will be difficult for you to stand by and watch me go through these experiences, but please try not to worry too much about that part because I’m resilient and I will make it through and come to understand why these treatments were necessary. But, along the way, please don’t allow the professionals involved in my care to reduce me to an object, a case study or a subject for a paper. Please don’t let me be treated as an anomaly, a statistic or a freak of nature because I’m not any of these things.

As an infant, I will not be able to tell you how I feel. I can only cry when I’m in pain and smile when I’m happy. I will learn a little more about the world each day and either grow to trust it or learn it’s a scary place. My needs may be overwhelming, but I will give back ten fold in ways that you may never know. I realize how tiring, how stressful, how agonizing it must all be for you, and I appreciate every sacrifice you’ve made and will have to make in the years ahead.

No doubt, you will be offered many opinions on what you may expect from me in the future — the things I may be able to do, but more likely, the things I may never be able to do. Take these opinions with a grain of salt. Just believe in me and I will surpass every limitation others have imposed upon me. Encourage me, but please don’t treat me differently because I’m not any different in the ways that really matter.

As I begin to grow older, the physical differences between me and others will become more clear, and it will be at that time that I will need you more than ever. I’ll need you to remind me of what I just said — that I’m the same as anyone else and should never feel any shame in my body.

At some point, I will have questions — some may make you uncomfortable or embarrassed, but please try your best to either answer them for me or find someone who can. It’s important for me to fully understand how my body works. I deserve to have everything everyone else does but may need more guidance in getting those things. Please be patient with me as I search and try to determine and understand what those wants and needs are. I may even be too shy or embarrassed to bring certain things up to you, and if this happens, I will need you to anticipate my questions and let me know you’re always there for me, no matter what.

I can’t promise it will all be easy and for this, I am sorry, but I just want the opportunity to grow into the person I was meant to be. With your love, support and protection, I know I will. I love you both.

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Originally published: January 26, 2015
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