Today is world cerebral palsy day. Never before would I have imagined that this day would feel so personal, and make me feel so emotional.
Before the birth of my beautiful twin boys, I had never related or understood much of what cerebral palsy was.
Cerebral palsy, or more affectionately known as CP to those in the know, had been mostly a distant concept to me. One marred in vagueness, somehow relating to traumatic births and physical differences.
I first heard this word related to my children when I was 28 weeks pregnant. We knew one of our boys had health challenges, ‘righty’ as we liked to affectionately call him. Yet it was at this 28 week scan when our fetal medicine team began to be worried about our other twin ‘lefty’, who seemed to be having some irregular heart functions.
At first there was no mention of CP as everyone was focused on the heart, but as we were sitting in the waiting room after 2 hours of scanning and incredibly stressful consultations with many doctors we were finally given the all clear to head home.
As we got up to leave the waiting room our lead specialist said, almost as if in passing, well if this heart function does deteriorate your one child will die and you will have almost a guaranteed chance of the other having cerebral palsy.
I remember this moment like it was yesterday. Feeling like I had taken a blow. And being left void of my senses and seperated from the world around me as if in a bubble for days. Later I have come to know these feelings as grief and trauma.
After the boys were born, issues around CP faded way into the background as both boys went into neonatal intensive care.
‘Righty’ went on to have a very rough and perilous journey, with survival becoming our all consuming mantra for his life. Whereas ‘lefty’ had a very smooth journey and thrived so much we got to take him home early (well to Ronald McDonald house which was still a huge upgrade).
Fast forward 11 months, and us emerging from over 9 months of hospital admissions and six surgeries for our mr ‘Righty’. Our attentions were suddently and unexpectedly drawn to our other healthy boy, ‘lefty’ who seemed to be very stiff and still unable to meet the typical milestone of sitting.
Suddenly, CP was back on the radar, and months later another blow was laid with the diagnosis of two different types of CP for this son.
Another fast forward to 2 years later and another blow. This one we only received just three weeks ago, with our other son also having CP, and now both our boys hold this label and diagnosis.
This condition, incredibly broad in spectrum, complex in cause, contributes to how so many face this largely non-accessible world we live in. CP is the most common childhood disability in NZ and across the world. Defined as a group of permanent disorders that affect body movement, muscle coordination, body movement, muscle tone, reflex, posture and balance; for us this is now completely personal and a part of our everyday.
For our boys, CP will be apart of the rest of their lives. Things like independent mobility, or even sitting on their own, is not due course, and we are not sure if will be something they can do.
CP has given my boys incredibly challenges, and yet the way they have risen to these challenge is nothing short of inspirational. My boys determination and zest for life, leaves me in tears most days. I have learnt how to fully live in each moment, and delight so fully in my children, regardless of what they can do. In our house nothing is taken for granted, and every small thing is huge.
A friend of ours who recently spent time with us said, after seeing how much effort my boys put into everything they do, made her decide to go for a run as she felt so inspired by their determination. This is not only true for my boys, but for many people with CP. I heard someone once say that for some people with CP going for a walk can be the equivalent of a typical person walking in knee deep snow, the exertion and energy required is enormous.
So as we mark this special day, world cerebral palsy day, I hope you can glimpse for a moment the richness and diversity so many in our society bring to life, and that we all come at things from very different places.