We have two children, both have inherited CMT from me. I remember the day we had our daughter's diagnosis confirmed, after having suspicions for a while that her walking was not as steady as should be. Although it was not a complete surprise, the appointment left us both feeling sick to the core. I remember the nurse taking our daughter out of the room to play, while I sobbed and hubby stayed strong putting his arm around me. I recall the plummeting sensation in my stomach and an emptiness in my heart, shock is the word used to describe it.
As with all progressive conditions there are some days better than others, managing that takes time. Watching your children learn, grow and struggle, is part of bringing up a family, but riding the relentless wave of appointments, falls, operations, physio, more falls and tests, must have taken over our lives; physically and emotionally for the largest part. We always did the 'normal' family stuff, and probably a bit more. Day trips and holidays were sometimes clouded by the pain of seeing our daughter struggle to keep up with her peers.
We won't allow our lives to be overtaken by the condition, but there have been days when it has cruelly ripped through us all.
My CMT does disable me, but I 'have it' rather than I 'am it'. The environment we live in often makes things awkward and frustrating, and there are certainly so many considerations that could make things much easier. Somewhere between the 'medical model' and the 'social model' of disability is about right for most of us. The friendships and relationships made along the way, the family dynamics, experiences and memories, have been the biggest influencer. These secure anchors, sometimes strain and pull us under, but keep us afloat.
Our feelings and memories, although familiar to lots of us, are uniquely ours. I know our, now young adults, still appreciate the sights, sounds and scents of our most visited and many favourite places. The photos taken can never reflect the depth of feeling in that moment, no matter how clear the picture appears to be.
You write with such clear-sighted honesty. This is such a moving, helpful post. X