Wednesday, January 23


After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

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1 comment:

  1. Hmmm.*scratches chin and ponders over brilliantly written post*
    Call me a sceptic but I dont think it wouldbe right or natural to fully place ones trust in the Doctors (as excellent as they can be, as a Mother, one must have a role to play) and no, I don't think madness really comes in to that, although it sure can feel like it at times, I've no doubt. I think the key here is trusting in your own process. It is right that you are asking these things. i.e am I doing enough/too little/too much- that's called doing your best and at the nend of the day your best is ALWAYS good enough. and actually, from my perspective your actual best, is in fact, pretty amazing xxx