My family and I live between two worlds –the ‘normal’ world of day to day life, just the three of us. We know our child is disabled, but here that’s what we’ve used to. Going out to familiar places as a family is the same, we feel secure and on home turf. My husband will tell you that I’ll speak to anybody and he isn’t wrong!
I adore my boy, he is gorgeous, brilliant and is worthy of being noticed, loved, and included.
And then there’s the Other world. It’s a world of abbreviations, meetings, and or collecting consultants/specialists like others may collect shells. Its form filling, having to grit your teeth and put down on paper exactly what your beautiful child cannot do. For a family so focused on what he CAN do and IS doing, this cuts deeply.
Recently we had a team around the child (TAC) meeting; an afternoon of us discussing with Sam’s teachers, school nurse, disability social worker, OT, physio (and the rest) how to best support him and allow him to reach his full potential while ensuring that he is safe, healthy and happy. While we are immensely lucky to have a team who genuinely love our boy and want to help him achieve, these meetings act like a sharp kick which shatters our fragile little bubble so carefully built around ourselves and which acts as our shield.
Now don’t get me wrong. I don’t live in blissful ignorance and am fully aware of his challenges, complexity and disabilities.
But when we’re at home or with friends and family, they don’t seem to matter. He’s just our Sam. When faced with the cold reality that your beautiful child is one of the most severely disabled of children however, it is somewhat tough to keep it together and not fall apart. Suddenly he isn’t just our baby; he’s a medically fragile, complex child and his prognosis is uncertain to put it politely.
We are not alone in this; its something I think every SN parents can identify with. Maintaining the balance is incredibly tiring, reacting immediately when the you-know-what hits the fan while maintaining that balance point is downright impossible at times.
So tonight, while the Dude and his Dad are snoring away softly in hospital (sleep study), I will be taking the chance to get to bed very early… with any luck I can replenish some of those reserves before it all starts over again tomorrow!