Julie Lyles Carr: That Place

Tuesday, January 18, 2011

That Place

Every now and then, in a post that is addressing one topic, a sentence or a paragraph or a thought will stand out to some of you and I find myself cogitating on what I wrote from a new angle.

You did that for me last week, last week when I posted about my adoration of 4 of 8's Auditory Verbal Therapist, Wendy. Several of you noted a couple of little sentences in which I talked about the emotion that comes with parenting special needs kids.

To be honest, I don't know that there's a lot of frank conversation out there about the emotional ride disabilities bring. There is a lot of rhetoric about what to 'call' certain challenges, if it's learning 'disabled' or learning 'special' or if 'special' should be used at all. Is it 'hearing impaired' or is it 'deaf'? Is it 'autistic' or is it 'has autism'?

But no matter the issue and no matter the word choice, it's an emotional ride.

Let's face it, the majority of us don't enter parenthood hoping for kids with challenges. Although I do know a few people who have long felt a call to parent special needs kids, most of us analyze the ultrasounds and count the digits. We look for all indication that everything is normal.

For some parents, news comes early on that issues are on board. And for some of us, myself included, indications that we were going to have some challenges come later. For us, that news came with 4 of 8 when she was 2 and 1/2 years old and for 7 of 8 when she was 11 months old.

The news of 4 of 8's hearing impairment was a complete stunner for us. I thought that hearing impairment meant complete deafness. 4 of 8 responded to certain sounds, low, deep sounds. She didn't have ear infections and we had no history of childhood hearing loss in the family. When I took 4 of 8 into my pediatrician because of my concerns over her speech (or lack thereof), my pediatrician scheduled a series of developmental appointments for us, the first stop being the obligatory hearing test. I sat in the sound booth with 4 of 8 on my lap, Mike still at the office since we just 'knew' hearing loss was not the issue.


The news of her hearing loss came right at the time we left a long-time business partnership for a new firm. Literally right in the middle of the transition. Literally. Mike was spending his first full day in his new office when I called him from the audiologist's office to tell him that the initial tests had been confirmed in a more extensive ABR test.

It's hard in retrospect to cleanly divide the news of her hearing loss from the stress of the business move we were making. All said, it was a weepy, confusing, astounding season. My initial reaction was to think, "Will she have to wear hearing aids to prom?", which, obviously, was the least of the concerns I should have had.

With 4 of 8's situation, those early days were a wash of trying to absorb tons of new information and wrestling with letting go of expectations and developmental milestones. Mike and I each had a different path; I cried it out. For about four or five days. Cried it out. Fought with insurance. Cried some more. Threw some hissy fits. Cried some more.

And then I was done.

For Mike, in the midst of a tumultuous business move, he had to move the news of 4 of 8's hearing impairment to a compartment with tight walls. He moved forward with getting his business re-acclimated. He listened to my discoveries and despair. He cloaked himself in pragmatism.

For a while.

It was about three years later, a season when we were with the right therapist, where I felt more comfortable with the lingo of 4 of 8's challenges, felt that we were making solid progress, that the enormity of her situation hit Mike. One night, while putting 4 of 8 to bed, 4 got upset in trying to tell Mike about what stuffed animal or blanket or drink of water she needed before being tucked in. The more frustrated and upset 4 became, the more incoherent and garbled her speech became. Mike worked and worked with her, finally getting her settled. After she drifted off, he made his way downstairs to our bedroom.

In tears.

Big tears.

He looked at me through reddened eyes and said, "She's deaf. She's deaf."

It was a flood three years in the making.

If I had to run a list of the mosaic of feeling that comes with parenting through challenges, it would include heartache, fierce protectiveness, justification, accommodation, obsession, realization. Heartache in the flickering awareness that this kid will have to work harder, struggle more. Fierce protectiveness in knowing that some people are going to be jerks. Justification in trying to manage everyone's expectations. Accommodation in making the necessary life and schedule changes for equipment, therapy, tutoring. Obsession with trying to find every fact and elixir that could explain or help. Realization that you love this kid just as she is.

That place.

That place where it's simply part of the landscape of your family life. And you have the honor to help others on the path. To support and to cry and to be a shoulder.

That place.

I'll write tomorrow of our emotional journey with 7 of 8. It's been a different experience, partly because of our previous experiences with 4 of 8, partly because we are dealing a different challenge.

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