Physio Session # 5

Morning physio session with Di, today’s session was by far the best one yet in terms of Chiara’s ability to move with ease. YAY!!!!

It’s all about celebrating.. the micro-milestones.. what comes so naturally for most of us, is the ability to move freely. The amount of effort that is required from Chiara in order to make even the smallest of movements, like placing one arm in front of the other in an attempt to move forward, or try and organise her body parts so they work fluidly.. is an ongoing battle for her.

As parents watching her struggle to sort out which hand, or knee or foot moves where, is tricky… we so much want to help her…. to move for her… to fix it all for her… alas our world feels like we are looking through a microscope, at the tiny details in Chiara… and we have to break things down for her.. to her pace… and it’s quite beautiful, if you let it… to slow down absolutely everything… your want for a faster outcome, your need to move and push things along quickly… we watch her every detail… every small movement that feeds into another.. that show us tiny ray’s of hope.. that maybe just maybe her brain and body connection will conquer this huge feat.

As the saying goes “Adopt the pace of nature: her secret is patience” Ralph Waldo Emerson. It’s my daily mantra!!

Watching her attempt to move, her will and determination – I have complete Faith, she has a spark of spirit and strength that is palpable. And athough at times I feel moments of discouragement when I read an updated medical report  “In the future, Chiara will need a wheelchair, but may be able to stand and take steps with a gait-aid support”….

And then the visit from a rep from PME Group  “Paediatric Mobility Equipment”, like these little seats in the photo’s that sit in the bath.. then the mind starts to think… oh sh*t, how will I bath her if she can’t sit up, how will I lift her body as she becomes heavier in the bath or up the stairs (note to self: next home single-level entry !!! what was I thinking having steep stairs and kids???? not a safe mix) .. The rep left me with his catalogue of equipment, omg all these metal contraptions made to hold human bodies in certain positions, with straps all over.. they freak me out… I just can’t marry the two when I look over to little Chiara… to possible future scenarios… I guess I just can’t let my mind go there…

And here in comes the poignant constant lesson from Chiara “mum, stay with me, here in the present moment… we have no other time…..than the now…”

So we continue count our rainbow’s, not our thunderstorms…

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