It's in your hands

We have 3 whole hours at the play area this morning after dropping Reuben off, to run through the water jets, play in the sand, make new friends, steal other toddler's toys and make them cry and whine, learn about the ego, before picking Reuben up and driving to the hospital for ENT clinic.

Reuben has some fluid in his ear again, so typical of his syndrome, and I'm reluctant that he has a 4th ear surgery to place ear tubes, on top of his 16 total surgeries and an uncountable number of anaesthesias. He hears well enough through his bone conduction aid, so perhaps it's something to postpone until his 2nd open heart surgery, thus combine the anaesthesias. That date still looms on the horizon.

So when this is your life, your son's life, you take great exception to a late middle aged woman and her aged mother scowling at the fact that Reuben momentarily went up to her mother and tried to make friends with her with an "Excuse me!".

Be sure I defended my son at every level. I felt sorry for the woman who'd clearly never known the joy of children, hers or those related to her, as they were but an awkward nuisance to her. I tried to explain to her that Reuben has such great sensory impairment; he cannot smell, he hears aided and without directional assistance and he wears glasses, so values the sense of touch. To be shrugged off like a nasty bit of fluff, I am bitterly upset and angry and yet glad for the surprising support of a guy who took the time to come over and thanked me for saying what I did to her and criticizing her lack of manners.

So we moved ironically to a corner where the boys had run off to where two little boys sat with hearing aids, and a mother who through her son's disability, was now in the final stages of becoming a translator for the deaf in sign language. We chatted, I felt happier again. I took the young woman's number as her signing inspired me. Never before have I tried to conduct a conversation in sign even though when I'm speaking now (like my friend in CHARGE Kristi), my hands are always all a flutter. I'd recommended to the sad woman that she take time to understand special needs to which she said "Well, my mum (about 80) has hearing loss too" which I guess is the same as a child with a congenital hearing condition. Reuben has never heard typically and hasn't yet learnt social etiquette. He amazes me every day that he values touch despite the brutal existence of the first months and then years of his life in prolonged intensive care, breathing through a tube, eating through a tube, in and out of hospital with debilitating health. He is brave heart and I am sickened by the ignorance of, thankfully, a small majority of our populace who have no time for understanding disability, nor that we are all but a car crash away from disability ourselves.

The End.