I Won’t Back Down (Tom Petty)

Today is World Cerebral Palsy Day. It’s not a celebratory recognition day but more of an informational and support day. An advocacy day. The fact of the matter is that cerebral palsy is never going to be a welcome diagnosis. It’s a lifetime, uncurable diagnosis. Cerebral Palsy impacts over 17 million people worldwide so it’s far more common than most people recognize.

From the start, learning your baby has cerebral palsy triggers feelings of guilt, grief, uncertainty, sadness, and fear. It also incites our need to protect, learn, advocate, educate, and more than anything love. Cole’s birth was one hundred percent not what I expected. I had a healthy pregnancy. I loved being pregnant and the love I felt for the growing baby boy in my belly felt so intimate and unlike anything I’d ever felt. I fantasized about his arrival and the joys of watching him grow and thrive and meet all of life’s milestones. I imagined the kind of boy he’d be and all of the things we would share together, as a family.

However, life had a different course for us to navigate. Cole arrived via c-section, not breathing for nearly 12 excruciating minutes, ultimately requiring five weeks of NICU support before he could come home. It was determined that at the tail end of my pregnancy, I was exposed to a child who likely had Fifths Disease (Parvovirus B19 – a fairly common childhood virus that has cold like symptoms with rashy pink cheeks, also known as “slapped cheek rash”). It’s generally harmless but can be fatal to fetuses in utero. In our case, I showed no symptoms or illness, nor did I have any awareness of my exposure, but Cole and I both had antibodies, discovered by the battery of tests run following his birth. It caused him to retain almost a pound of excess fluid, which led to him to stop breathing at birth.

Thankfully, he defied the odds and “the next hours” became “tomorrow” and “tomorrow” became “next week”. I had the most basic understanding of what Cerebral Palsy meant. I have a 2nd cousin, who was in my dad’s generation, who has C.P., though no one ever called it that. In the early weeks and months, it didn’t matter. What mattered was doing everything possible to support Cole. He went home after five weeks in the NICU with a g-tube for feeding because he wasn’t able to suck.

No one really helps to prepare you to parent a child with cerebral palsy. It’s never part of the imagined outcome of your baby’s story. Once home, we quickly got into a crazy routine of eat, sleep, pump, sleep, eat…repeat. We were blessed to have a friend who happened to be a pediatric physical therapist, who kindly taught us a series of exercises to do with Cole to help coax his body to roll, stretch and move. We quickly started a daily program of attending physical, occupational, feeding and speech therapies, and then supporting the therapies with at home work as well.

We filled our heads with knowledge, and armed ourselves with a tough exterior of “we’re okay”. We weren’t really but we learned pretty quickly that no one, even family, wants to know the reality of our day to day. No one wants to hear about the loss of dreams. The truth is there’s no real opportunity to adequately mourn the loss of the child, the life of the child, you imagined, or the life as a parent you dreamed of whilst preparing for your baby’s arrival.

The other reality is that fierce, unwavering love you have for your child and your determined desire to ensure that his life is happy, rich and full leads you to learn to advocate, research, connect and to tap into strengths in yourself that you never knew existed. You become more compassionate, resilient, creative, and inclusive. You throw your efforts into ensuring that the world is more understanding and accepting of people with disabilities and differences. You do your best to support and seek out opportunities to enrich your child’s life by finding inclusive activities, encouraging friendships, and following your child’s lead.

We become the best version of ourselves so that our children can become the best version of themselves.

Just the three of us (circa 2009)

One Response

  1. Thank you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: