The chance of getting that unexpected call, that unexpected joy, that good news over an email, a sms; these are rare in the life of a special needs family. Most of the time we are waiting for th call that will turn do your enquiry, the therapist in leave, the SNT is sick so no school for your child and so on and so forth.
So the unexpected is rarely there in its positive, vibrant colors. What do we do ?
We adjust. We find the little pockets of joy which other families have lost focus of.
We wait for the night to settle and pray for better mornings and in the mornings we are happy just to see our children wake up with a smile.
We share and we listen to each other, even if it sounds incoherent to others.
Others; the extended family and friends become a rare appearance. It’s not us, I realized a while back. It is them. They lack the empathy to feel joy and certainly the pain. The ineptitude makes them individuals I feel sorry for now.
My children and I have found such empathy in strangers, in friends I found on Facebook, amongst colleagues who extended that ear to listen to my concerns and who feared advice that was for regular kids but applicable because , well, they are kids.
Right now I am hopeful and energetic, at least most of the time. Like regular parents I have my apprehensions but unlike them I have the plus point of not having to worry about issues of disable diene, bad company at school or college. I have the privaledge of having access to their phones and what they surf. That is huge in today’s world. And most of all we sit and laugh and talk nonsense most evenings.
*image is of the brothers sharing music on an afternoon in April 2016, posted with their permission *