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.


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.


Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Rhizomelic Chondrodysplasia Punctata

Why It's OK That Doctors Can't Cure My Daughter

Yesterday, I had the awkward conversation again — the one that breaks my heart even though I’ve repeated it numerous times. A colleague was running a marathon to raise funds for the local neo-natal unit. I sponsored him and mentioned that my daughter had spent eight days in the unit. “Is she OK?” “Yes, she’s great [...]

Share These Stories to End the ‘R’ Word

This Wednesday, March 4, is the annual Spread the Word to End the Word day. This is an awareness day about the hurtful effects of the word “retard(ed),” otherwise known as the “r-word.” This day also promotes inclusive people-first language. Check out and share the following r-word stories to let your friends know why it’s [...]
alphabet block with the letter 'R'

Why Should Disability Have to Directly Affect Us for the 'R' Word To Be Offensive?

Today is the official day of awareness for the Spread the Word to End the Word campaign. Per usual, I’ve been reading posts from various bloggers who I often read, and today a particular post struck a nerve with me – not in a bad way. The author wrote, “You’re not offended until it affects you,” as a response to [...]

A Letter to the Governor Trying to Cut Early Intervention Funds

Governor Rauner, You don’t know me. Our paths have never crossed — until recently — when I read about your proposed budget cuts to Early Intervention. My heart sunk. I couldn’t catch my breath. Tears streamed down my face. Since we’ve never met, you can’t possibly be aware that I’m the mother of an amazing 2-year-old, [...]