Cerebral Palsy isn’t just a diagnosis, it’s part of our life

March is Cerebral Palsy awareness month and today, March 25th, marks National Cerebral Palsy Awareness Day. It also happens to be the first one since Ella’s diagnosis in January.

There’s a lot of things I could tell you about CP; it’s caused by an injury to the brain, most often at birth, and does not progress though can fall on a spectrum from mild to severe. But you know what? That’s the kind of information you can get just from Google.

What I want to tell you about is how CP hung over our heads for a year. The raised eyebrows and frantic note taking at appointment after appointment.  The immediate reaction that something must be terribly wrong if anything appeared different with Ella. The strained smiles to strangers who asked if Ella is crawling,  and then their response that it will happen soon. It literally could not happen soon enough for me.

When our doctor in the NICU first mentioned the words Cerebral Palsy to me, I had an immediate emotional and gutted reaction; I pictured our two pound baby living in a wheelchair, unable to walk, talk, or feed herself. I imagined her growing up being ignored or victimized by society, her missing out on a date to prom, the chance to go to university.  We had just recovered from the preterm birth and news that she may not make it, and then confronted with the notion of a disability? It was unfathomable and frankly, unfair.

I was angry. Angry that we waited so long to deliver. Angry that there was another baby born first who took priority in the NICU. But mostly I was angry for Ella. She was handed a shitty hand with a mother whose first reaction was to tear apart that NICU room, to point fingers,  place blame.

But, I didn’t.  I gulped down my sobs, took a breath, and said ok. Then, I just let time pass and allowed fate to step in. I did the exercises,  went to the appointments. I cuddled Ella, bathed her, fed her, comforted her, loved her. But still, the diagnosis came and there was not a damn thing I could do about it.

I can’t go back in time. I can’t fix her brain bleed, the extra fluid on her brain, I can do the exercises, but can’t control her muscles. My love won’t make her walk, but it will damn well make her Ella because beyond that diagnosis is a little girl, just like every other child with CP, those littles who become what they can and who take the world by storm because they are so loved. Her doctors and therapists might only see her diagnosis, they might not see her, and as she grows, other people might not see it either, but I always will.

I can’t tell you how the CP will ultimately affect Ella, I don’t know if she’ll walk, it’s much too early. But, I know she’ll fight, be stronger than I ever could be. I know she’ll do amazing things because she’s Amazing Ella. She fought for her life at only two pounds, I can only imagine what else she’ll do.

So, as we recognize days like today and recognize our babies who have CP, let’s remember that beyond the diagnosis,  beyond the wheelchairs and walkers, beyond the doctors and appointments,  are very amazing people who continue to bring light and love to so many people.

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Amazing Ella

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3 thoughts on “Cerebral Palsy isn’t just a diagnosis, it’s part of our life

  1. I found your blog on a search for hydrocephalus. Little Ella looks cute as a button. You seem to be doing well with her. I can relate to your child’s NICU experiences as my son was born premie in 1982. His mom has Type 1 diabetes, but what led to his early delivery, was her unknown bicornit uterus. While he was eventually OK and is now 32, I on the other hand wasn’t so fortunate. In 1992, a head injury from an auto accident led to my developing hydrocephalus. And these last 23 yrs have been a constant battle with the medical field and now 12 shunt revisions. Your Ella appears to be in good hands. We really only have what’s in the here and now. Worry when it’s time for worry. I suppose for me, that time is now.

    • Thank you! Ella never needed a shunt or surgery, though was on the watch list for much of her NICU time in case they all of a sudden needed to transfer her. She definitely struggles with the weight of her head and has a bit of an odd shaped head, but she’s a fighter. Much stronger than many of us!

  2. Good for her. I encourage you to expose Ella to lots of music and rhythm activities. Two years ago, I held a private drumming therapy session for a very challenged 11 yr old (girl) with CP and autism. She become so engaged and responsive to it, that she now does drumming 3 times per week. It helps balance, spatial orientation, movement, speaking, confidence, and self expression.

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