doctors, bosses, and normal

I’ve talked before about Monster’s disability. He was born with a hearing loss and has hearing aids. Since his diagnosis nearly 6 years ago, my life has been a whirlwind of appointments : Doctors, speech therapy, counsellors, ENT, audiology…. the list goes on and on.
For a time, there was an appointment every other week. Sometimes 2 or 3. It was exhausting – not only physically, but emotionally and career-wise, too. I am lucky to have a job that my supervisor is very understanding of motherhood and the time it requires, allows me to make-up time and switch shifts, but I wasn’t always so lucky. When all of the appointments started, my manager at the time hated me. She looked for any opportunity to drag me in her office and reprimand berate me. If I hadn’t needed the job so badly, I would have told her where she could put her job… alas – a single mom needs money to survive.
I thank God for my current Supervisor and Manager… after that experience, I will always appreciate a “boss” that doesn’t hold my child against me.

Monster has struggled with fluid in his ears for a few years now. He hasn’t had a reliable hearing test in over 2 years because there was constantly fluid or congestion.

He had tubes put in 2 ears ago, which helped for a while, but as soon as they grew over, the fluid came back. The doctors would not re-do the tubes, because it wasn’t “consistent” fluid. Every 3 months Monster would go to the Audiologist. Every 3 months she would shake her head and mutter under her breath because he would have congestion in one ear which makes it difficult for her to get an accurate reading on whether his hearing has remained at the level it was, or degenerated. Why wouldn’t they re-do the tubes? Every 3 months, the fluid was in a different ear. Frustrating.

Last week, Monster had an appointment with his Ear, Nose and Throat doctor. This is the appointment where the doctor looks in his ears, comments on the amount of fluid he has, then books an appointment to follow-up in 3 months because “if the fluid is still there, we will definitely have to re-do the tubes.”

But in 3 months, the fluid will be on the other ear and I’ll get the same speech.

Yeah. Wait for it.

“Right on – no fluid”

Huh?

I look over at Monster lying on the examination table, smiling and giving this new E.N.T., who I now LOVE, a big smile and a high five.

“None?” I ask him, hesitant because he is new, after all – and looks like he’s about 25.

“None. Been a while since you’ve heard that?” he asked with a big smile. Even the nurse looked pleased. Of course that could be because Monster was flirting with her for the whole appointment. He has a way, that little one. The force is strong in him. But THAT’s a whole other post.

Then we got whisked away to do hearing tests while we had a chance for accurate results. And they were a word I haven’t heard in some time : Normal. Well, normal for Monster anyway. While his hearing hasn’t gotten any better (and never will) it hasn’t gotten any worse in the nearly 6 years since he was born. This is just the sort of good news that I needed.

Normal.

Not a word often heard in our home. And definitely not used to describe any of us…

disabilities, depression and why I don’t like some people (part 1)

I am the mother of a disabled child.

It took me years to openly say this.

Monster has a bi-lateral mild-to-moderate sensorineural hearing loss.  He was born with this disability.

His hearing was tested at birth through the Infant Hearing Program. A lovely volunteer inserted a foam earplug in his ear, which produced sounds.  The ear’s response to these sounds were recorded and he was given a ‘refer’ result.

Peanut’s hearing test had been a “pass” right off the bat, so of course I was a bit concerned.

The volunteer shrugged it off with phrases like “quick delivery”, “possible fluid in the ear”, and I was told to wait a few days and take him to the local Health Unit to have him re-tested.

A week later, I’m bundling up my wee babe, along with my nearly 2 year old and heading off to the Health Unit for a re-test. While Peanut played quietly in the corner, we had an instant reply of what had happened in the hospital.  Foam plug in ear, quizzical look on her face, repeat test 2 times.

Then comes the questions:
“Was he delivered by c-section? (apparently fluid can stay in their ears longer because of less compression on the head during delivery)
“Does your family have any history of hearing loss?” Do my practically deaf Grandparents count? (I think that’s more for survival than anything…)
“Did you drink during your pregnancy?”
Ok, now I’m starting to take this personally.  You’re telling me there’s something wrong with my baby and now you’re trying to blame me?!?!  (yes, I got a bit defensive over that one.)

I was referred to an children’s audiology specialist.

Tests, tests, tests, questions, questions, questions…. blah blah blah “your son will have to wear hearing aids” blah blah blah

What??

I’m sorry, I don’t think I heard you properly?

And that, my friends, is when depression set in. I’m sure that was the moment, because I felt my heart drop at those words.  Also?  I was not about to admit that there was anything wrong with my child.  Wouldn’t that mean I had been a bad mother?  I had already spent the last 6 weeks scouring my memory for anything bad that I might have done during my pregnancy…  those few glasses of wine before I knew I was pregnant?

There’s something wrong with my child.  I’m a bad mother.

So, at 6 weeks old, my little Monster was diagnosed with his hearing loss and the wheels were set in motion to get him his first pair of hearing aids.  The world becomes a bit of a blur.

Now, I should explain that I grew up in a very small community and only ever knew one child that had hearing aids, and that was in public school many many years ago – and he was nearly deaf.

Being that my exposure to this sort of disability has been somewhat sheltered, I tended to ask a lot of apparently stupid questions like:
Will his hearing get any better?
Will he always have to wear his hearing aids?
Is there some sort of surgery to help him?

To which I got many eye rolls and gentle, condescending pats on the hand “No, dear. His hearing will never improve and yes, he will always need hearing aids.  His hearing loss isn’t severe enough for a cochlear implant, so no, there is no surgery that can help him.  His ears just didn’t form properly, I guess. Unless it was something during pregnancy.”

Again the accusatory comment.

Again, that stab of guilt at a young mother that has just learned that her child isn’t “normal”.

To top it all off, as I left one of the multitude of appointments that I had to take Monster to, I happened to see on a comment sheet that someone had written that “Mom is very difficult and will not accept the diagnosis”.  I’ve never wanted to tell someone to go Eff themselves more than I did that day.

Excuse me if I have a lot of questions.

Excuse me if I worry that I did something wrong – but thanks for the reassurance that it is probably just hereditary.

Excuse me if I’m a bit overwhelmed at the thought of my little boy not being able to just have a spontaneous life. I want him to be able to run through the sprinklers AND hear his friends all at the same time.  I want him to be able to play in the rain.  I want him to be able to put in earphones and listen to music, not depend on an FM system and boots.

I JUST WANT A NORMAL CHILDHOOD FOR HIM.

So I spoke up.  Which is not like me in these sort of situations. Really.

I spoke up and said “You know what? I think I’m well within my effing rights to want a normal childhood for my 2 month old baby.  I don’t appreciate being called difficult, just because I have a lot of questions. And by the way, if I refused to accept the diagnosis, WOULD I BE HERE GETTING HIM HEARING AIDS???”

GAWD I hate people sometimes.

I’m a good mother.