An Ode to Karen
In recent months I have been on a reading and researching rampage.
I have been calling, questioning, emailing, and contacting dozens of people from all around the world, searching for interventions for my boys.
I have also been on a doing, trying bonanza. For example, last month our family flew back to Australia for a month and attended an intensive physio block for both our boys. And man was it intensive. The boys used weights, pulleys, supportive suits, resistant equipment, blocks, crutches, and all of their energy during the daily three hour sessions.
So why all of a sudden this focus? Why the complete commitment to therapy and intervention?
It all starts with a very basic idea, an idea that not everybody subscribes to; or believes in with confidence anyway. And this basic idea is that there are things you can do for children with cerebral palsy that will enable the brain to heal from the initial trauma.
Last year, after it was confirmed that both our toddlers had cerebral palsy (CP) I did lots of research (of course!), but things around intervention seemed patchy to me. The doctors that were treating my boys were pretty vague around treatment and had a 'lets wait and see' kind of approach about most things. So after all the trauma and hospital stays we had gone through, we decided to focus on the present and accept what life had thrown our boys.
But then two things happened to each of my boys that made me reconsider all of this.
The first thing was that an intervention we trialled on River worked. A wearable therapy suit gave him the ability to sit by himself, for the first time ever. River was over two and never been able to sit, but this suit gave him that extra bit of awareness and strength to learn this new skill. Which he continued to be able to do after the suit was off.
Secondly, from January this year Zach started to lose function, and experience much more stiffness in his muscles.
Words can't really describe what it’s like, as a parent, to see your child lose an ability. It did not happen all at once, but was a gradual decrease in function and things just generally being harder for him to negotiate with his body.
At this point no one had told me that this can happen. I knew that later on this could happen, but for toddlers I assumed this was a long way off.
So I read a book. A book with a crazy title (which now makes total sense), that explained some of the changes I saw in both my boys. The book , 'the boy who could run but not walk" by Karen Pape, shares her life's work at seeing incredible change and development for kids with CP.
Throughout the book Karen unpacks this phenomena she witnessed tracking children with CP from birth to adulthood. She witnessed incredible change and development, and in the case of some kids, they would struggle to walk but be able to run with a typical running style. And in the brain both of these functions come from the same place which shows that healing has happened, but habits and lack of strength and awareness hide this healing.
For decades this woman championed this cause and had been a pioneer in an area considered closed, and completely predetermined.
And today, the reason why I am writing about this is that this doctor passed away last week.
The things Karen has stood for are now not as radical and are slowly being adopted by the mainstream medical and rehabilitation world.
We can see this with the Cerebral Palsy Alliance Research group, one of the leaders in the world in this field who openly champion the cause of neoplasticity and intervention working. For decades Karen toiled away at this cause, doing cutting edge multidisciplinary teamwork, and doing long term tracking of children with this disability.
My heart feels sad, heavy and incredibly in awe at the life of this one woman, and the incredible impact she has had on me personally.
At times, particularly when I am completely exhausted, a part of me wishes we didn't believe in this just so strongly. As it feels overwhelming at how much of our boys future rests on our shoulders, and the ability for us to be deliberate.
But then small things, which are major things, happen.
Like today when Tim took the boys to the park. River went down the slide, and was able to sit up whilst going down the slide by himself. He is almost three and has NEVER been able to do this. Our therapy team at the intensive told us that changes will come in the weeks after all that work, and it has. Small, but major.
And again this overwhelming feeling of love and appreciation overcomes me. Nothing is lost on us, and each step of the way with our boys is like sun after the rain.
Thanks Karen. Your life has changed mine and my boys forever.