Monday, December 8, 2014

The Year winds down - heartbreak and hope

 I awoke this morning with a thought on my popped in unexpectedly and uninvited... autism is not a disability as much as it is a way of life. 

I could never predict  and I would have been wrong had I tried to predict where life would go... what Andrew would do or not do, accomplish or not accomplish ... where he would be at age 20... how we would care for him or survive the rigors of caring for a severely disabled individual.  

There is a mercy in not knowing.. a mercy in being spared a view into the future... there is a grace in retrospect that knowing now what we know would we have done all we have done for him in the early  years.  Would we have short changed him? Not tried quite so hard... not struggled quite so much... not dreamed quite so big?  

I believe life is meant to be lived in the present.. not what was..what could be or might be, but instead living firmly in the present of what is... I count seconds not hours and I count days not months. 

Andrew's care is firmly rooted in day to day. Like many individuals with severe disabilities Andrew lives in the moment... his moods can fluctuate from giddily happy to morosely sad all in the blink of 5 minutes. I try not to soak up his moods, but instead to float above them, understanding they ebb and flow like the sea. No one has any answers or predictions.  Just live for the day... have no happy in the happy moments... and cautiously wait for the serious moments to move past. I revel in the smiles, rejoice in the laughter and securely hold the sad times at bay, hoping they will not return, but knowing they will. 

Andrew has entered a new realm this year.. an unforeseen and heretofore, untrampled path that has now been carved in my memory. Seared in emotional pathways and secured like the tracks of a railroad... one episode after another ... feeling so long and drawn out, but really only moments in time.  

And so it came to pass that this was the year that Andrew would develop a seizure disorder... not a mild seizure disorder, a slight lapse in consciousness or a tiny tremble of a hand or closing of the eyes, but instead a huge upheaval in the brain, an opening and closing of neurons and pathways... pathways that I picture snapping on and off like little firecrackers... only guessing what that might feel like in his brain... how uncomfortable that is.. how frightening... how engulfing of one's spirit. The inability to control one's limbs.  The flashing of lights perhaps? a tingling? a pain? What does this feel like that takes a human's soul to this netherworld of unconsciousness.. flipping, and clenching and taking over the body for those moments of misery.   

And so we lost a lot this year... lost our faith that all will go well... or at the very least progress... lost our resilience to a certain degree... and lost our ability to not have him in our sights at all times...without a pang of worry and fear that this monster of neurons would appear unexpectedly knocking him to the ground without our being aware. 

We have weathered this storm for now... not secure that it has passed but simply feeling that the squalls will come and go and tides will ebb and flow whether we are on board or not.... we just ride this ship as unwilling passengers... but we follow it where it takes us. 

After two emergency room visits we are beginning to piece some bits back together.. some little pieces of our existence returning with a small measure of confidence. We rely  on the anti seizure drugs to do whatever it is they do... but we monitor them carefully, because at times these medications are more sinister than the seizures themselves and they are not our friends, but only our uncomfortable  partners. 

Andrew has returned to working in the shop... though less than he used to... we are happy to have him... and we love him dearly as always.. there is no diminution of parental love despite the hardships... life truly does march on. 
Cutting wooden skewers for our paper trees - getting back into life.