Here’s What Cerebral Palsy Means to Our Family

Here's What Cerebral Palsy Means to our FamilyMarch is Cerebral Palsy Awareness Month …

…and this is one of the many, many faces.

Let me give you the facts: cerebral palsy (CP) is basically a giant umbrella diagnosis. It means, as a rehab doctor explained to me, simply “brain injury plus mobility impairment.” Mild CP can be barely noticeable, perhaps a slightly different gait when walking, poor balance, a weak arm. Severe CP can mean someone is completely unable to walk or move on their own. My son is somewhere in the middle.

I sometimes get asked, “what causes CP?” The answer for my son is that he had a stroke in utero. We have no idea why. Trust me, I’ve replayed every moment of my pregnancy over and over again to try to figure it out.

We’ve been on the CP journey for 10 months now, and I still don’t know how to describe it. It is overwhelming and can be all-consuming if you let it be. But in many ways, it’s made me more appreciative as a parent — of the tiny milestones, of the good days, of the mundane.

It is adding 10 minutes to dressing your kid every morning. Splints, orthotics, prescription socks (yes, this is a thing). It’s passing up the cute baby shoes in favor of two different sizes of the widest shoes you can find, no matter how ugly they might be.

It’s knowing your insurance policy better than your office HR manager.

It is watching babies younger than yours achieve the milestones your baby so desperately works toward in physical therapy. It is double the joy when YOUR kid (finally) gets there.

It is acceptance that they may never get there, too, and knowing that’s OK.

It is living in constant fear of seizures, contractures and spasms.  It is medication, every day, twice a day. It is holding your baby in the middle of the night while he is stiff as a board and knowing you can’t do anything to help.

It is cringing internally when you hear “brain damaged” used as an insult.

It’s ordering and sending extra Christmas cards for therapists, doctors, and orthotists. It is the fact that you even HAVE a preferred orthotist.

It’s therapy. Multiple times a week. And actually, kinda, sometimes looking forward to taking your kid, so you can chat with someone who speaks your language.

It’s letting your kid make a mess you otherwise wouldn’t… because they’re doing it with their right hand!

It’s feeling the eyes of judgment on you, as you give your toddler a bottle of formula in public, as you pull into the handicapped parking spot even though you and your child “look normal.”

It’s constantly being amazed at what your child is capable of.  It’s focusing on that in the middle of the storm.

That’s what cerebral palsy means to our family — and I’m OK with that.

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3 Responses to Here’s What Cerebral Palsy Means to Our Family

  1. Clare Larkins March 16, 2016 at 1:25 pm #

    Love you, love this!

  2. Olivia March 20, 2016 at 1:17 pm #

    Thank you for sharing your story of your sweet little family and how CP has impacted it.

    First, I know of a shoe that will wear with well with afos…maybe small and silly but I hope you enjoy these shoes as much as I do. The are called plae. They are pricey, but awesome. You can customize the length of the straps to ensure it is what your kid needs… And they definietly have a rugged boy look. They are machine washable and they have a growth guaruntee… You can read about it on their website.

    Second, treating Cp is a passion of mine. i am physical therapist and I spent several years studying CP in a postgraduate program as well a treating patients with cp in typical and in intensive programs. I am currently staying home with my two babies… But I would love to put two ideas in your head to consider, research and talk with your therapist/doctors to see if it is for your family. They are both types of intensives therapies… Longer hours per day, but short intervals lasting only a few weeks. One is called therasuit intensive training and one is constraint induced movement therapy. i am happy to answer as many questions as you have, but more than anything I hope you can explore them and see if they are the right fit for you.

    Hope this helps
    Thanks again for sharing
    Olivia

  3. Kristen March 24, 2016 at 9:36 pm #

    Another CP mama here, I enjoyed reading along with where you are at in your journey. My stronger girl will be 2 tomorrow, and she works so hard in therapy!! So much progress has been made, but it’s hard to see her still struggle so much when compared to other kiddos since it is almost unnoticeable. Yet what is easy for them, is really difficult for her. We are learning as we go. We’ve found zappos to be great for the shoes because they have lots of xw and xxw sizes plus free shipping and returns!