That’s the topic for today’s post. I truly know fear. I’ve experienced it in my life as much as you all have and in ways only a few can relate to.
I’ve known it in the form of an abusive father that hated me because I wasn’t his child. I’ve experienced it in embodiment of stepping off a bus on a warm summer morning at 1AM onto some yellow footprints as men in camouflage and campaign covers screamed at me to keep my eyes forward, hold my feet at a 45 degree angle and press my thumbs against the seams of my trousers. I’ve been overcome with it and joy as I held my first-born child, Christopher, wondering how I would screw this up. Oh yes. I have known fear.
In three days I will experience a new kind of fear. Emily, my youngest daughter and child, is scheduled for an all day evaluation to test for learning disabilities. As I write this, we’re concerned that she at least has dyslexia . Anything more than that is the great unknown to us.
Two years ago my wife and I began noticing that her speech wasn’t as clear as Christopher’s or Sarah’s had been at that age. She had a hard time with blended words, particularly words that have an ‘R’ or ‘TH’ sound.
We took her to her doctor for her four-year old check up, informing the doctor in the course of it all that Emily was having problems with her speech. The doctor kindly told us that most children that enjoy a pacifier have this problem and that it would clear up over time. Even telling the doctor that Emily hadn’t had a binkie for over a year got the brush off. It’ll clear up was what we heard then and then again six months later and then six months after that. Two years later we heard the same things but was determined to get a referral for someone qualified to run tests on Emily. Even that was met with resistance.
Other things have come up with Emily’s ability to learn. She has a difficult time going through her ABC’s and 123’s and has only recently understood the alphabet to the letter ‘J’. She’s six years old and it’s been an uphill battle to get someone to recognize that she and Tabitha need help. You can only hear “Go see your doctor” so many time before you want to scream, “That’s what we’ve fucking done and the doctors won’t listen!”
Hell hath no fury like a woman scorned and Hell hath no fear save for that of a mother that won’t be heeded. Tabitha went on the offensive to find a specialist that would do what we needed.
We were lucky to find a wonderful speech language pathologist that sent our already uneasy minds spiralling further into paranoia. Don’t read that as sarcastic. I mean what I’ve written. She really is wonderful. Anyway, that was the first time that Dyslexia was used in our presence concerning Emily. We’d danced around the word ourselves, using pretty phrases like ‘learning disability’ or ‘educationally incapable’ in its place. Neither of us wanted to use the word. Honestly, we know why.
The youngest of Tabitha’s older sisters has Dyslexia and she’s made a great go of life. Like the oldest sister and Tabitha, she’s excelled in the business and personal world as an adult. With that said, Tabitha has insight into Dyslexia from watching her sister grow up with it. It was a battle that left Tabitha shaken at best. I won’t detail what she witnessed growing up but I will say that every lesson was a battle.
I danced around the word’s usage because I was raised by two people with disabilities. The man who called himself ‘my father’ had Athetoid Cerebral Palsy while my mother had Epilepsy and suffered often from grand mal seizures.
Being the child of two ‘retards’ and the brother to a girl who had developmental disabilities, I suffered through massive bullying until my sophomore year in high school. I don’t know what changed but most found something else to pick at. Our experiences shape who we are and mine were no different in that facet.
My life growing up with the handicapped has left me sympathetic to their trials and tribulations and how any disability can have a profound effect on those around you and the future.
With each child Tabitha and I became pregnant with, the fear of a disability loomed at the back of our minds. As I looked down at each child, I felt like James Cagney in his portrayal of Lon Chaney, Sr. in The Man of a Thousand Faces. Each time my mind replayed the scene with Mr. Cagney standing over his fictional son’s crib, terrified that the boy was born deaf. And each time I play the scene through with the clap he made that woke his son, crying.
Unlike that scene, there is no clap that will signal everything is okay for millions of parents. The biggest hurdles for the parents of children with a disability of any kind is financial and support in nature.
Case in point, our insurance isn’t what it once was. Even with that aside no insurance in Tennessee covers testing to discover educational disabilities or educational consultants. If not for the speech pathologist, we’d never have the info of for several consultants. Even finding a pathologist was two weeks work in calling around and getting a mix of misinformation with information. It’s been one major obstacle or roadblock that would leave any parent feeling way past frustrated.
We’re not making millions or even thousands off my writing but we make enough to cover what bills we have. It’s that little extra for Emily’s battery of tests that leaves us scrounging for what we can. We’ve been lucky though. The educational consultant is allowing us a payment plan to pay for the testing to discover what exactly is wrong with our angel.
Three days will go by and then she’ll take the tests. One week will go by and then we’ll get the results. One month will go by and we’ll hopefully be on our way to helping Emily. One lifetime will go by and we’ll pray that we’ve done the right thing with her as surely as we will with Chris and Sarah. In the meantime, I feel afraid of what life has in store for her. I never wanted to save the world. All I ever wanted was to save my children.