Thursday, December 9, 2010

Unspoken Words: When Shame brings Perspective & Renewed Gratitude

This autism journey never stops lifting me up. Once again, I unknowingly moved through my sadness to a place better than I had ever been before.

In the 10 years since Nicky's diagnosis family and friends have lost loved ones, sisters, brothers, cousins, aunts, fathers, mothers, husbands, parents and even children. Hidden beneath my deep and genuine sadness for their loss, was a silent voice that felt they were better off than I was. As painful as their loss was, a part of me thought; at least it was over, they would recover, move on, get stronger, reach acceptance and go on to be happy again. On the other hand, I didn't see that for me.

My loss, the loss of my son's future, the loss of typical life expectations and joys that all parents expect to have as their children grow; revisit me over and over with every milestone, we so easily take for granted.  I thought, he's alive but we're not living the "normal" life we expected or he deserved. Everything from play-dates, dating, going to parties or college, getting his heart broken, going to the prom, fun memories of childhood, having "the talk", planning his marriage, becoming a grand parent,  are no longer experiences to anticipate they're only messengers of repeating grief.

This thought lived buried in the back of my mind as having some truth until Nicky had his first Grand Mal seizure, after which his little body laid totally still and I thought he was dead. In that inconceivable moment the choice between living with autism or NOT, didn't exist. I only wanted Nicky to be here. The notion that I would go on, get stronger, be happy again  was born out of grief not reality.  My family, friends who have lost a loved one are not better off, and I'm ashamed of my misguided conclusion. In my pain I lost touch with all I had to be grateful for, making it possible for me to compare my pain to a loss, I had not suffered!

Nicky for all his challenges by the grace of God is here and I'm here. I get to see him every day. Clearly not seeing him - no matter what loses we suffer, what sacrifices we make, what crappy stuff living with autism may dish out one day after another - it would not be better. We have the possibility of tomorrow.

No, is not the life I expected, and I wonder who's life is?  There are challenges that I could have never imagined, and thats just "What is". So now with a renewed determination I thank God that he's here. I thank God for all the joy he brings to me and others. I thank God for the better person he is forcing me to become.  I thank God for giving me enough love to share,  and the strength to help my son. I thank God for every minute he let's us share and I intend to grab the most of them and I apologize for thinking I understood, when I did not.


  1. Reconciliation is hard but not the answer. I think too many of us try very hard to reconcile ourselves to whatever sad situation in which we find ourselves. I think, frankly, it is a waste of energy. In addition, it very probably only adds to our unhappiness. Am so glad you have found another approach!