FAMILY VOICESDear Readers:
Okay, I have two versions of the "Family Voices" piece I've been asked to write. I need you to vote on which one you think I should submit. You can either leave a comment below, or if you'd prefer, e-mail me at: fullycaffeinated@comcast.net
Here's the criteria:
* Give nurses/health care professionals inside look at what life is like for parents of children with a disability or chronic health condition
* A reflection of my lived experience
* Not the whole story - just a significant part, i.e. diagnosis/es, when first discovered something was wrong, transitions, unexpected joys/gifts, how expectations have changed, letting go, etc.
* Include a description of child's condition to give readers background
* 500 words
Piece #1:
My now twelve-year-old son, Rojo, falls neatly into exactly zero categories, he has no tidy syndrome that helps to explain his “quirkiness” to others, but does have many diagnoses that all point towards him being somewhere along the autism spectrum, or as having a pervasive developmental disorder, not otherwise specified – a term that continues to confound me, even after twelve years “in the business.” When I get in charge of the world, this non-helpful, not otherwise specific “diagnosis” will be amongst the first to go.
What we do know about Rojo is that he is dyspraxic, has poor muscle tone, auditory processing disorder, does not have either a right or left handed dominance, is a flat-footed, over-pronator, has Sensory Integration Disorder, Attention Deficit Disorder with Hyperactivity, Obsessive Compulsive Disorder, and spiritual gifts that defy a 21st Century label.
Rojo was born in the summer of 1996. He was yanked from my body on his very due date – a sign of things to come, this boy would be nothing, if not a slave to time - and gave a lusty cry. Everyone smiled, “Good lungs!” the doctor cheered. As the nurses placed him on the scales and saw his weight register at 9 lb., 5 oz., we got the thumbs up sign from our end of the delivery room. They measured him at 22 ½ inches and marveled at his nice, big head.
When my own pediatrician came the next morning to see Rojo for the first time, he said, “Now, this is what a full term baby looks like!” both of us recalling the birth of my daughter, two years prior, who while only a week early, was a puny 6 lbs. 6 oz., and didn’t have the best Apgar scores in the world.
The doctors, nurses, grandparents, and we parents all had high hopes for this little bundle of joy, and as we noticed his dimple in his right cheek, we were certain lots of smiles and joys would be ours to have.
We were wrong.
At least in the beginning.
Within days of his birth Rojo began to scream. Not cry. Not fuss. Not get a little cranky when he was hungry or tired. He began to scream. I knew within the depths of my soul, that something was wrong. No baby could be this unhappy without a reason. This was the scream of a child in pain – excruciating pain.
I took Rojo to the pediatrician for all his regular Well Baby appointments, and several sick baby appointments, too. He seemed to have chronic ear infections. The pediatrician, a lovely man with two young children of his own, dismissed my concerns at every opportunity. How I wish he’d just once looked at me and said, “If you think something is wrong, something is wrong. I am a specialist of
children. You are the specialist of
your child.” If he’d thrown in a little, “You’re not crazy. I know the crying is driving you crazy, but you are not crazy. You are strong and brave, and I will help you to find someone that can tell us both what’s going on,” that would have been even better.
Piece #2:
As friends all around us, those who began their parenting at about the same time as us, start to launch their children into the world, the realization that our son’s “launch” may never fully occur, hits us with fresh waves of grief.
For the most part we are at peace with the fact that the plan we
had, and the plan we actually
have are two very different things. For the most part we accept that our son has special needs and with those needs also come very special gifts. And for the most part there are more days of joy and gratitude than sadness and resentment.
For the most part.
We didn’t expect to have a child that only eats five foods, none of which show up on the food pyramid. We didn’t expect to have a child that cannot play organized sports, be in a classroom without an aide, or take eleven years to potty train. We didn’t expect to have a child that would be obsessed, for years on end, with garbage trucks and calculators, time and scoreboards.
We didn’t expect to have a child that possesses no sense of jealousy or competition, and is completely uninfluenced by the media’s pervasive “buy this” mentality. We didn’t expect to have a child that has peace, love and compassion oozing from his being, at an age “typicals” are self-centered and moody.
We didn’t expect to have a child who may never live independently. We didn’t expect our child rearing years to extend to the ends of our lives. We didn’t expect we would need a plan in place for what happens after we’re gone. We didn’t expect to burden our older daughter with this, either.
We didn’t expect to have to fight to get someone, anyone, to believe us there was something wrong with our little baby. We didn’t expect to react so strongly, twelve years later, when someone, anyone, implies that there is now.
We didn’t expect to have working knowledge of acronyms like ADHD, OCD, ASD, SID, and PDD-NOS. We didn’t expect to become warriors on bad days, advocates on good days, single-minded in our drive to pave the way for our son.
We didn’t expect grief to be something we’d cycle through, again and again, like winding our way up a Slinky, each time being as surprised as the last time, when we come back to the same old place: The place of Why.
We didn’t expect the depths of love we know now, that we knew nothing of before.
We didn’t expect to stop being the teachers along the way, and become the students.
We didn’t expect that the greatest lesson of all, would be to release all expectations.
Thank you, readers! I so appreciate your valuable input!
* Photo from http://adsoftheworld.com