I Hate You, Joubert Syndrome, But I Need to Thank You for a Few Things


Dear Joubert syndrome,

You’ve turned my life upside down. Over the last five years I’ve cursed you oh so many times. I’ve called you every name in the book, cried about what you’ve done to me, my family and most important, my daughter.   But I’ve never gotten the chance to say thank you…

Yes, you heard that right. Among all of your hate mail, this is a thank you letter. You’ve robbed us of many things, but what you gave us is so much more valuable.

You robbed my daughter of her language skills; she’s nonverbal at 5 years old, and I curse you every time I think of the real possibility that I may never get to hear the words, “I love you, Daddy.” But in return you taught me to “hear” more than just her words, to pay closer attention to her and understand her world more than I ever would have otherwise. You have taught me what it means to truly understand a child and the world they live in.

You’ve robbed my daughter of her balance and coordination; she struggles to accomplish the simplest of milestones that others take for granted, such as sitting independently and walking and feeding herself. But in return you’ve taught me to appreciate her every accomplishment, to marvel at her determination and see her inner strength.

joubert

You robbed me of my initial vision of what being a father would be like and my hopes for what I would see my daughter become. I spent a lot of time trying to rid your from our lives and “fix” my daughter, but you showed me I was the one who needed to be fixed, and you fixed me, my views on life and my views of those who are different. Instead of seeing how someone walks funny, I now see someone who has worked hard and overcame so much to be able to walk at all.

You’re the mutual frenemy of so many amazing people around the world. People I would never have even crossed paths with if it weren’t for you. Thanks to you, I now not only call many of them friends, I call them family.

You’ve robbed my daughter of all those things I thought were the most important things in life. But in return, you showed me I was wrong about what’s really important and showed me what truly matters.

You’ve shown me strength I didn’t know I was capable of, love I didn’t know I was missing out on, hope to accomplish things I never thought were possible, and a passion to focus my life on.

So in short, Joubert syndrome, you’re part of my family now. There are times I want to deny you and claim that you don’t define my daughter, but the truth is you’re a part of who she is at the core. To deny you is to deny her and everything extraordinary about her. My relationship with you is a marriage, one without the possibility of divorce, and you’ve made me, my daughter and everyone we meet along the way, better people. And for that I thank you.

P.S. I still hate you though.

Sincerely,

The proud father of an angel

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