Tuesday, October 14, 2008


Dear 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


Suzy said...


Both stories need to be told.

Almost can't be separated.

Love you the most.


Robin said...

Like always, I love your writing. I really like both.

So the audience is doctors and nurses? I think the first one provides more info that is needed in that group, especially what to say - "The crying is making you crazy, but you are not crazy." is the best, how I wish I had heard that.

Could you edit and modify the we did not expect into one paragraph (still keeping it's intent) and add it and stay under 500 words? Maybe after the "you are the expert on your own child" -- how you had to become the expert on your child. Does that make sense?

Just some thoughts, you are a great writer and I am sure it will be great.

Wendy said...

I like Robin's idea. I really like the first one the best but find the second so touching!

Creating Quiet Spaces said...

Moving! The second one had me in tears. It very much helps someone to understand your experience of Rojo. The first one, however, may offer some practical ideas for doctors and nurses in how to better handle these kinds of situations. Empowering parents seems like a no-brainer but for some reason health care people sometimes don't get how to do that. Your story can help.

Me said...


Kim said...

Through my tears, here's what I think:

They are both amazing. I expected nothing less.

I agree w/ the others that #1 is more helpful for doctors and nurses. But I also have to have that what we didn't expect piece in there--esp. we didn't expect to stop being the teachers and become the students. SO powerful, plus would be great for doctors to read, maybe w/ a line encouraging them to do the same please!

Maybe you could also switch in the acronym line from #2--that way you could make some room in #1 by cutting out the stuff about his diagnoses (even though I love that too).

Email me if this isn't clear. I'm frantically working but had to comment!
your VHE,AA

Jenny said...

I like the first one, but I'd include the details about the 5 foods (none on the pyramid) and the potty training in that piece. I'd also expand your comment about him being a slave to time a bit more.

Good job. They are both touching.

Angie Ledbetter said...

Sorry, but they're both good. If you could take parts of #1 (the technical stuff that would help health care folks) and combine it with the moving parts in #2, you've got a dynamite piece! Whichever you choose, it's still a winner. Go, Mom. You're doing great.

Nancy said...

I cannot choose. Both need to be told. Not helpful, I know. I do not quite know the audience. If you are speaking to parents, the first validates the frustration of discovery, and the second the acceptance of what is. Did you count the words so see if they can be blended? Of course you did! I think the second speaks so loudly that if I had to choose, that would be the one.

You are blessed...with the gift of words and the gift of Rojo.

Joanne said...

I like the first one because you mention what you would've liked to have heard from the doctor, the compassion you wanted, the doctor's trust in your instinct. I think that's important for health care professionals to know, their verbal impact on the patients/families.

Deb said...

The second touched me deeply and I loved the lyrical rhythm of it.

I believe maybe you have one more draft in you. . .

I love your writing. I love you.

Terry said...

Wow. Good advice from your readers. I would say the first one combined with the last part of the second one.

Kathryn said...

God....I love it all. You can say it, Carrie.

When I read this paragraph in particular below I said, "Yes! Yes! That is it!"

"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."

Too many tears right now to be a good critic. Somehow you have to put them together. You rock.

Susan said...

Dear Carrie,

Consider the first one your 101 course for them; your second the advanced course.

I agree with Suzy that both need to be heard, but you know how it is in that very narrow world of science - your second might just win a label for hysterical - only because they do not listen.

So start with number one and bring them into your world with compassion for their near total lack of training about the real world.

Wonder if the article could actually be broken into 101 and Advanced with a little one liner explanation of why there are two??

Just a thought.

Susan, Liberty's Aunt

Lola said...

#1 based on their requirements with a little bit of #2 :) Kinda like Robin said and Kim:)
Both are amazing!!!!!!!!

Michelle O'Neil said...

I think they are both beautiful, but I think the first one speaks more to the doctor and what they need to do to actually be effective for parents of special needs kids.


Anonymous said...

They are both wonderful -- I like #2 best, but #1 may be more of what is needed . . . can you submit both?

shauna said...

LOVE them both. I know--that doesn't help. I agree with most of the comments here about the first being better suited for doctors and nurses. But they're both still very, very touching.

Me said...

So... I kept coming back to check on your votes and see if everyone would in fact choose #1. While looking at the posts, I kept thinking my post seemed so incredibly cold...Yuck! That's not me. I was actually going to tell you to take a little of #2 and put into #1 and twist that and turn this, but I didn't want to be too critical. Who am I, not a writer. Truth is...I like them both, love your writing, love your story, and love some of your friends stories. I wish meeting people in the real world was like the blogosphere...it's so real, so raw, most are not surface or superficial. I wish, I wish...