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Old Wounds Are Hard To Heal

Posted Jan 14 2009 6:36pm
I'm furious.

Not because of something that happened today, yesterday, last week, or last month. Not even something that happened last year.

I was in full nesting mode this evening, clearing out my desk, making labels, and getting everything in order to prepare for our little girl's arrival. I went to go place Christian's updated audiogram from Hopkins in his medical binder, and I started flipping through the pages. This binder is our bible. It's thick, and holds every single medical record I have on file for this kid that has to do with his hearing loss. It's meticulously organized and labeled. It comes to every appointment with us. All the contents are even scanned onto an archived drive for "just in case" moments.

At first, I was glancing at how much he progressed from going unaided, to aided, to implanted. Then, I flipped through our CI candidacy section, re-reading speech-language evaluations, genetic testing results, and even the psychological evaluation.

Then, I flipped to the only tab in the binder that isn't labeled, yet I know exactly what's in there.

The first document in that section is the red note that was given to us after Christian's newborn hearing screen. You see, at our hospital if your child passes the hearing screen, you get a green note with a smiley bear, which details the OAEs that they did, and a signature. If your child "refers" (come on, just call it what it is, it's failed), you get a red note, also with a smiley bear, that details the OAEs, and which ear(s) were tested. Our red note said that we referred on the right ear, but passed on the left...and then has a note on it "Unable to acquire OAEs in right ear, due to fluid in ears from C-Section delivery".

The second document in this section is a packet of information from the first ENT's office we went to to get Christian evaluated. A note from the ENT on the front to our pediatrician says "Normal hearing per attached OAEs. Possible eustachian tube dysfunction due to fluid in ears from C-Section". Yes, this was the well-respected doctor at one of DC's largest ENT practices who looked me, the brand-new Mom, in the eye and said "Christian can hear perfectly, look at how responsive he is".

The third, fourth, and fifth documents in this section are all from our very reputable Children's Hospital, all of which show no responses on his OAE, but yet in the notes section all have varying forms of "Needs more testing, refer to X audiologist".

Now I ask myself why didn't I ask more questions? Why did they piece together OAEs and DPOAEs at this office? Why did they assume that his hearing loss was due to fluid from a C-Section delivery? Were all of these doctors in disbelief?

Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?

Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.

So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will.

I'm prepared to possibly get another red note with a smiley bear in 2 short weeks when our daughter is born. And if we do get that red note, I'm going to cry. I'm going to be sad. Then, I'll make the calls I need to make, put our action plan in place, and make sure that we never, ever, have to go through what we went through with Christian once again.

As a parent, you want your child's life to be better and EASIER than yours. A hearing loss, no matter what level, makes a child's life hard. Then again, having a Deaf child is all I know. I don't know what life is like without pilot caps, ear molds, or topstick wig tape. I don't know what life is like without modeling language the way that I do, constantly narrating my life. I don't know what life is like without sign language. I don't know what life is like without running to the Dry-n-Store first thing in the morning to get all of the equipment ready to turn on my kid's ears. I don't know what life is like without having a Deaf child.

Just when I think I've gotten through the grief, it appears again. I'm sure my pregnancy hormones have something to do with it. When I think I've got things under control, it sneaks up on me. I guess I should just come to terms with the fact that a part of me will always be angry, and that same part of me will always be heartbroken for my sweet son who doesn't know what life is like without his magic ears.
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