I shared my therapy map with you in an earlier post and I said that not only did the map give me more perspective about CP treatments, it also helped me managed the cost of treatments, which can become ruinous.
By understanding the groups of therapies, I was able to choose the least amount of therapies that ticked the most number of boxes. It also allowed me to look at the treatments objectively and weigh up the effort versus effect of each. Clearly, we need to go for maximum effect with minimum effort. I’m not going to pretend it all becomes very easy once you find the right treatment, you have to be incredibly organised if you want to look after your child, as well as maintain as much of a “normal” life as possible. This has been particularly challenging for me as I have a son who is older than Emma, and who doesn’t have CP. (Yes, once again, this is a longer topic for another day).
I believe that my home-based therapy gives me more of a family-orientated balance than what I’d have if I was always travelling to therapies. I know mothers who spend their lives in cars and planes, going from one therapeutic guru to another, all the while believing that this time it will be different. This is the current trend especially in brain targeting therapies, that if you “just stick with it and keep going, miracles will happen.” This is a positive message, but the inverse is what bothers me: that if “miracles” do not happen, its because you have just not trained hard enough or you have not tried the “right” therapy yet.
This fear of failure has a powerful psychological effect and reminds me of the Greek mythical story of Sisyphus. Sisyphus was a deceitful god who was finally punished by Zeus. His sentence was to push a big stone from the bottom of a hill to the top. However, just before he reached the top, the stone would stop, and then roll backwards. Despite his every effort, each time the stone would tumble down, leaving him where he started. He was doomed to this cycle for eternity. In the first two years of Emma’s life, I felt like Sisyphus. Dutifully doing the training, making no progress but persisting with the therapy in the hope that “tomorrow, things will be different”. This is my definition of hell: doing a meaningless action and failing and then feeling compelled to do it all again the next day – for the rest of your life.
Parents of CP babies are told to hope and hope more, but if you’ve been reading my posts, you’ll know how little value I put to this. Indeed, the GMFSC studies (there have been multiple ) clearly show five curves of development. It is clear that creating high gross motor expectations in a parent with a child with severe CP, is really simply not feasible. I know what it’s like to have therapies fail over and over and over again, so I find it particularly hard watching parents with severe CP children who replace one failed therapy that targets the brain with a more expensive one, or even more expensive surgery. The more costs escalate the more hopeless they feel.
Doctors see the same cost trend with cancer patients. The most expensive treatment happens towards the end of the battle. It is interesting, though, to see that this is only true for cancer patients who are not in a palliative (quality of life) care programme.
Athul Gawande, a surgeon and author, writes in his book Being Mortal that cancer patients who get palliative care have been shown to have a better quality of life. This is because they don’t choose heavy-handed treatments when standard treatments fail and, incredibly, they live longer.
I wonder if we can take a leaf from this book for kids with CP?
I see so many parallels between palliative care for cancer patients and ABR for children with severe CP. It’s all about aiming for quality of life, and not about daily training in order to become “normal”. Only once we have established the health basics, can we set our aim higher.
It has been my experience, that if you focus on the basics (immune regeneration, metabolism, relaxation, nutrition and structural repair,) things finally do come together. I found, through this unconventional approach, the unthinkable becomes possible.
I found that I never had to give up hoping for my child. It is with huge relief that I can now report that “miracles” now happen all the time in our home.
This cartoon by Hugh Macleod from Gaping Void summed up exactly how I used to feel.