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To Facebook Friends Who See All My Posts About My Child's Dystonia

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When your daughter has rare condition that causes her daily pain, your thoughts are consumed with that every day. When there’s no cure to take it all away, you just want to scream from the rooftop until someone hears you. You want people to understand how hard it is for her to go through this and for us, as parents, to watch her go through this. How incredibly helpless and lonely it feels.

I don’t want pity, that’s not at all what I’m looking for. I want you to understand that while you might get tired of all my medical facts I post on Facebook, I’m just trying to get the word out there. I want the name of her condition on the minds of scientists, doctors, and yes, I would like to educate my family and friends. I want you to advocate with me, not because we’re best friends or even family, but maybe because you’re a parent, maybe you’re a nurse or a teacher, maybe you know someone who knows someone fighting a battle, maybe you’re fighting your own.

Waiting for a cure feels like waiting in line with a million people, and I’m just a mom who can’t be patient. Our lives have been jolted into a different type of reality. That saying — “I would do anything for my kid” — that moment is happening right now for me. So please bear with me.

I know I have probably blown off half of you a time or two. I couldn’t meet for a play date or coffee. I haven’t returned your phone call from six months ago, and now here I am clogging up your Facebook page full of information that will probably never pertain to you. I talk all about her visits to the hospital for her brain MRIs, I share pictures of her in therapy, I announce how much blood she just had taken and mention the fact she didn’t cry. I brag about how wonderful her preschool is and show off her newest feet braces she has to wear.

I do this kind of stuff as much as you talk about your job, or show pictures of your child in their sport uniform or of you lounging on the beach on your exotic family vacation. I hit the “like” button. I’m very aware that the only topic I seem to know about theses days pertains to a rare condition, but that’s simple to explain. This our life.

I’m exited to share these things with you. I love her little feet braces. She personalized them with a Care Bear pattern. The fact that she didn’t cry when having her blood drawn — I’m proud of how strong and brave she is. All those pictures of her in therapy, that’s her sport. She works so hard in physical therapy, and when she learns a new word during a speech session, I’m over-the-moon excited about it.

I can’t promise my days of spreading awareness about my daughter’s journey with dystonia will ever stop. I can’t even promise that I’ll call you back in a significant amount of time, but I can promise that every time you hit that “like” button on my pictures or when you hit the “share” button to help spread awareness about this condition, I appreciate it more than words. It lets me know you get it — even though our lives are completely different right now we can still connect on some level. I don’t even blame you if every once in awhile you skim past my lengthy post and don’t always have the energy to read. But for all the days you do, I thank  you!

I can promise I will continue to hit the “like” button on all your amazing life accomplishments and adventures, big and small. I promise to always recognize how different we are, all while knowing we are all enduring some kind of struggle in life. I also promise to spread as much awareness about childhood dystonia as I can.

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Thinkstock photo by Rohappy

Originally published: March 29, 2017
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