Tuesday, February 21, 2012

The Greener Grass

Very recently I came across a father of a child with autism who enquired about the program I lead in Brooklyn.  That enquiry led to the discovery of his heartfelt blog, his personal journey as a father with an autistic child.  I went through several entries and admired his courage to be so open.

I knew one day I would have to write about this and so, after reading this father's blog, I have decided to talk about my only son, the love of my life.  My Aaron, my prince.

People often ask how we do it with Aaron.  The numerous drops of blood taken multiple times a day to check his sugar, the interrupted sleeps to make sure he's stable, night after night, every night for the last seven and a half years, in fact.  Some well wishers muse in the middle of manual injections and sigh, "I could never do what you guys do."  Then the shaking of the head.  "I don't know how you do guys do it.  I would never be able to do it."

As though in life, we're always handed a choice.  As though we had a chance to say, "No thanks, God.  I would never be able to do it.  Hand the child to someone else who can."

The truth is, life threw a curve ball and we've been swinging ever since.  If swinging is what it takes to keep the child we've been handed, then swing away is what we'll do.

When Aaron was diagnosed with Juvenile Type I Diabetes at barely two years old the nurse in the ER scolded  me when my chin trembled and I began to cry.  The needles and the beeping noises and the hustle and bustle of the emergency room were enough to make a grown up anxious, let alone a toddler.  She advised me to compose myself and smile at my boy and so, I did.  My often stoic husband collapsed on Aaron's bedside and he started to weep after I told him Aaron had diabetes. I told him gently to collect himself.

I never really cried over this unwanted life sentence.  I had been teary, a little sniffly at times in the beginning but I never really gave it the good cry it deserved.  Two years ago, however, I watched the Biggest Loser alone, in the dark, with no one else in the house.  A twelve year old boy with Type II Diabetes had lost weight and the Diabetes shed away with the pounds.  I looked at that boy with utter disdain.  The putrid taste of resentment settled in my mouth.  "You ate and ate," I said at the television.  "That's why you became a diabetic!"

And then, just like that, the angry tears flowed and then the anger, eventually, turned to agony.  And finally, after many years, I sobbed.  Aaron's pancreas had been destroyed by an autoimmune disease, not because he overate the sickness into his body.  He can't shed the diabetes simply by self-control and dieting.  He had nothing to do with bringing the disease into his life.  Life just dealt his little tiny body a bad blow and neither he nor us, his parents, had a choice or a say in the matter. I suppose I had been angry for a long time but I didn't know who to direct that anger to.  For the moment, the 12-year-old triumphant boy seemed a fair target.

There has been numerous hospital trips since that first ER visit and the occurrence of hyper and hypo glycemia has become a normal part of our lives.  And really, the finger sticks, the insulin shots, and the scampering for some sweets to keep Aaron from bottoming out and possibly seizing, are so engraved in our daily schedule that people's pity often confuse us.  Aaron's diabetes has become nothing more than a hiccup at this point.  He is, to both me and my husband and I'm sure his baby sister, anything and everything that is healthy and normal.

I think for years I did not give myself permission to be sad because when Aaron became sick I was a Peds nurse to a bedridden little boy who breathed through a trach and whose chance of any normalcy was nonexistent.  I thought, I have the greener grass.  I have no right to be heavy hearted.

And because our steps are always ordered by God, I eventually became a teacher to children with special needs, many with varying disabilities, from minor to severe, and I found multiple reasons to be grateful.

I continue to pray diligently for a cure but I think after that good cry a certain level of acceptance brought a sense of wholeness that had been absent in my heart for a long time. Our grass may never be greener to someone else but if good health means not having Aaron, then I'll take the diabetes any day.  Really, it's made Aaron who he is: uniquely compassionate, always saying prayers for the poor, and befriending the friendless.

I'll never forget what the mother of that little boy I treated said after Aaron was diagnosed.  "Ana, I have to give it to you.  I can't do what you do for your son.  I don't have the stomach for needles."  I remember looking at my patient, his bedridden little body, and being very dumbfounded.  For that mom, incredibly, her grass was greener.

I've met numerous parents since whose lives seemed marred by the presence of extreme disabilities and you could tell just by looking at them that while they hoped for better, they never wished to live on the other side of the fence.  Just like that father who blogs about his little boy, I know the challenges of fighting through a disease and waiting for either a miracle or a cure but just like him, I also know what it's like not to want a child different from my own.

You see, the grass on my lawn may not be the greenest but it is home and to me, no other place would do.