What It's Like To Be a Mom Who Can't Fix Her Child's Condition


Every parent wants the best life for their child. You read all the books and follow the doctor’s orders because you know every choice you make with affect your child. You’re in control, you make the rules; it’s your job to protect your baby from everything harmful in this cold world. But what happens when the day comes — your little miracle arrives into this world as perfect as anyone could ever be — and the doctors tell you that, no matter what you did or how hard you tried, one of the worst things that could happen in this world has happened to your baby?

My little miracle, Sophia, was born May 9, 2013, and only a few days later, doctors told us she has a rare genetic disorder called rhizomelic chondrodysplasia punctata (RCDP), and it would be a miracle for her to see her first birthday. Being told that no matter what I did would not of changed what Sophia has made me feel like I’d failed as a mother. Being told that Sophia would have to face major challenges in her life that I had no control over motivated me more to make it my mission to give her the best life possible.

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Most parents would be teaching their children life skills — crawling, walking, talking, eating on their own but not me. I’d be teaching Sophia the joy of life. I’ve had to watch my baby girl get IVs, a feeding tube, MRIs, X-rays and surgeries.

In the beginning, when I was alone, I made this perfect picture in my head of how things where going to be.
I can’t teach her how to change her brain from being different. There’s no contact number to call that will change the way her eyes work. There’s no manual on how to change her appetite. No matter how many kisses I give her, some boo-boos will never go away. I can yell at RCDP all I want for putting her through this and one day cutting her life short, but it’s not going to listen.

As a single mother with a special needs child, your drive to protect them never goes away, and knowing RCDP is something that can’t be fixed drives me insane. I’m learning — slowly — to change the picture I had in mind. Because every time Sophia laughs or smiles, I know it’s because of me, every time she breaks the odds, I know it’s because I was there. I don’t think there’s anyone in this world who could smile more then she does. Even with all the bumps in the road, she always finds away around them. You can’t measure the amount of love I have for this little girl. She’s why I get up every morning, and knowing she’s here with me is why I sleep at night.

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