Carrie Link

IS THE THIRD TIME THE CHARM?

Dear Readers:

Thank you SO much for your overwhelming support, encouragement and wonderful suggestions, both in on-line comments, and off-line e-mails. I am eternally grateful. I tried to combine the good ideas you provided, and create a third piece. If you have it in you to read one more version, I would love to know if you think I pulled it off, if this is the piece to submit, or if I should submit the first two pieces and beg to have them both considered.

Thank you, thank you, thank you. I have the best blog readers in the world.

love.


FAMILY VOICES - Version #3

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.”

Rojo was yanked from my body on his very due date, 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.

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.
We 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. 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.

Looking back, I feel it was well within my rights to expect that from my health care professional. With the lack of validation, came a lot of things we didn’t expect.

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 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 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.

(654 words)