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Cerebral Palsy: I Don’t Need Awareness
My daughter Addie has Spastic Quadriplegic Cerebral Palsy.
Yesterday, the orthopedic surgeon said that she needs hip surgery. According to her most recent X-ray, Addie’s left hip is 36% subluxed and it’s time to consider our options. I was told many years ago that it’s very common for kids with CP to have hip and back issues. Surgery is a high probability for children like Addie, but being as competitive as I am, I thought no way would I allow it to happen to my daughter.
And I have been doing everything in my power to prevent it from occurring. We stretch every single morning. She wears her orthotic braces for 6-7 hours a day. Addie stands in her stander. I painstakingly position her as perfectly as I can to make sure her hips are in neutral and her spine is aligned. And we stretch again every night. But it’s not enough.
It is a hard pill to swallow that her disability is stronger than Addie and I both are. For seven years, I have provided for her every need. I have fed, bathed, and dressed her every day. I have taken her to restaurants, malls, and parks. I have carried her 55 lb. body onto jungle gyms, carnival rides, dance parties, and any place that isn’t accessible enough for her wheelchair. We go to therapy after therapy and spend hours learning techniques for strength. I am a resilient caretaker who devotes my life to being my daughter’s arms, legs, and voice. And it’s not enough. I cannot fix the cerebral palsy.
And right now, I’m hurting. Ninety-nice percent of the time, I am hopeful and passionate, advocating for her every need… but not today. Today, I am stuck in the relentless grief cycle that comes roaring back every time we have a doctor appointment like yesterdays. I am heartbroken for that little girl – my happy, strong-willed baby who will need to endure a painful surgery and remain in a half body cast for months. This little girl who fights her hardest to overcome challenges will suffer with pain, no matter the option we choose.
Don’t get me wrong – I can see the signs, no matter how much I like to wear blinders. Her right leg is about 2 inches longer than her left leg. Her legs rotate inward rather than out. She ‘W’ sits. I get it – the surgery can help correct it. And without surgery, the hip will dislocate completely and she’ll be in extreme pain. Once her hip reaches about 45% subluxed, it’s impossible to bring it back. Without the surgery, she probably never walk.
The “salvage” surgery is about improving her quality of life – nothing else. And it pisses me off. March is Cerebral Palsy Awareness Month, and believe me, I AM AWARE. And I hate it right now.
11 comments on “Cerebral Palsy: I Don’t Need Awareness”
Comments, discussion and insight always welcome!
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I love your passion. I am so sorry for this diagnoses, but your passion and drive to give her the best of life is beautiful. I know there is nothing I can say to make you feel any better at this moment, but you are a hero for that little girl. And, at least you will know you did everything in your power…even if it didn’t work…you tried it anyway…you gave her the best of chances. I’ve seen some awesome adults with CP that have very full lives. You are making that possible for her. Keep up the good work. I know that doesn’t help much today, but stay the course and continue to be her awesome mom who never gives up!
Thank you so much, Jimi! I really appreciate your kind words! So grateful for all the love and support.
Good luck for the future Wendy. I have Cerebral Palsy too. I use a walking frame and sometimes a wheelchair. I had hip surgery when I was 16 (I’m now 23). Because of the way I stood, my knees had rotated inwards, so they had to break the bones and reset them. After that, I had to have another operation to lengthen all the muscles in my legs. Until that point, I’d always known that I’d most likely need surgery, but I still cried the day I found out I needed it. I felt like I’d failed somehow, even though I hadn’t. It was hard work for my entire family as well as me, but we got through it. The first time i saw my knees after the surgery and saw that they were facing outwards once more I cried again, but it was happy tears this time.
Obviously I can’t say if surgery is the right choice for you, your daughter or your family. Only you can all decide that, but it sounds like your daughter has an amazing mother on her side who will support her no matter what. Both my parents and my family are the same for me, and that means the whole world to me. It is their determination as much as (if not more than) my own that has got me to the point I’m at today. Keep going, you’re probably helping her more than you’ll ever realise
Good luck, whichever option you decide. I’m sure there are lots of people who will support you whatever the future holds.
Thank you, thank you, thank you for your comment! Your words were so encouraging and I’m incredibly grateful.
You’re welcome I wish you the best of luck.
One of my daughter’s also has spastic quadriplegic CP. She will turn 17 a few weeks after the 3rd surgery on her left hip. Her hip is presently totally dislocated and yes, it is very painful. Due to my husband’s persistence we were able to find a surgeon to do a total hip replacement which we feel is the best option for her.
It’s a tough go for our kiddos and their parents as well. Enjoy your sweet girl.
Thank you so much! Best of luck with your daughter’s surgery. Sending you virtual hugs.
Feeling your pain and frustration right now. I’m sorry. I hope her surgery goes well.
Wendy,
Your posts have the ability to bring tears to my eyes! I cannot believe Addie is already 7! I think about you often, and will keep you in my prayers. I am sorry that you’re going through all of this. When it’s time, if you (and the fam) need to get away, you can always come visit me in Palm Springs!! We can hang out, swim with the kids, drink, talk about bees… Whatever you need! 🐝
Wendy, once again, I am touched by your words. Everytime I read your blogs, I find myself inspired. May God almighty bless you and Addie and keep your family in his abundant grace, peace and love.
Aww, I definitely understand your perspective. Our daughter has spastic triplegic CP. Her right hip is completely dislocated. We met with the pediatric orthopedic surgeon last spring to discuss surgery. Then a couple months before the scheduled surgery he ordered new xrays. The xrays showed that her hip and the shape of the socket had drastically changed (I still cant figure out how the heck that happened so fast) and the cons would far outweigh the benefits of the extensive surgery they would have to do. She ended up just having bilateral heel cord lengthening.