Tuesday, November 9, 2010

Whirlwind: Personal Experience Part 1

"Your son has mild permanent hearing loss." The words bounce around in my head.
"Oh, okay," I say. "What does that mean?"
"Well, we want to run a few more tests to confirm our findings, but it will mean hearing aids and auditory and verbal therapy."
"Oh, okay." My daughter lurches forward and fusses, I hand her a toy to distract her. The audiologist peers at me closely, concern in her eyes. She is under the impression that I am taking this all rather well. I smile and nod as the audiologist and speech pathologist explain the steps we need to take from here, show me a chart of what my son can and can not hear. The information is thrown at me quicker than I can absorb.

It's not until I am strapping the kids into their car seats that my heart starts to drop. My son has hearing loss? HEARING LOSS! It was the last thing I expected to hear. Sure he had never passed his newborn hearing screening and is behind in his speech, but by golly, the doctors kept telling me it was just because of fluid in the ear. Take care of the fluid, take care of the problem. I was expecting at most that he would need tubes in his ears.

I call my husband at work. "How did it go?" he asks.
"Good, he was such a trooper, they did four different tests on him, plus some more stuff. Umm, can I pick you up for lunch?" I can't explain it over the phone.
"Sure..." he sounds hesitant. I am worried he has something going on, I can't go the whole afternoon without talking to him, my husband, my help meet. "No," he reassures me, "I can go to lunch."

He gets into the car and I start in on the explanation I've been reciting in my head for the 25 minute car ride to his workplace. "He will need hearing aids and therapy," I recite.
"Are you serious?" my husband asks.

Then come the phone calls, my side of the family, his side of the family. I spend all afternoon on the phone, explaining, answering questions I barely know the answer to myself. My mom's response is, "Are you serious?" Do I sound like I'm joking? By the end of the day I'm emotionally exhausted. We are going out for dinner that night.

Within weeks, the hearing aids are fitted, therapy is scheduled. There will be two different sessions, a one-on-one therapy and a class therapy. The important thing is to prepare him for school. Both sessions will be held weekly. Insurance does not cover hearing aids or anything hearing related. They will only cover the therapy if it is listed as a specific type of speech therapy. I will need to find a babysitter for our daughter twice a week. The audiologist instructs us on how to fit, clean, and take care of the hearing aids. The batteries must be replaced weekly. There is special cleaning solution and dry crystals and a container that the hearing aids must be kept in nightly. We will need to do a genetic test to make sure the hearing loss is not a sign of something bigger.

I suddenly feel very overwhelmed.

I've been in contact with the state's early intervention program. They will subsidize the therapy and hearing aid costs until he's three, when we will be turned over to the school districts. He will be reevaluated when he turns three.

It's been a few months later and I am still processing everything. An interpreter for the deaf asks me if I have reached the acceptance stage yet. I tell her I don't know. I've been told that we will go through the same stages of grief as one who has lost a family member to death. Denial, Anger, Bargaining, Depression, Acceptance.

I'm not sure where I'm at in those stages, I'm just acting. I'm just taking it one day at a time, trying to do what's best for my child, and all the while worrying that it won't be enough.

4 comments:

  1. I cried reading your post. Sometimes being a mom isn't what you expected it would be. I'm sorry you have such a big thing to deal with. May I suggest reading Welcome to Holland. http://www.our-kids.org/Archives/Holland.html

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  2. So sorry! I know what it is like to go threw all of this, We found out a couple of months ao, my son is blind in one eye... and we actually could have done something about it 2 1/2 years ago! Oh thanks! and my other son has speech issues, his palet is fine but the other three sides of the closure between his nose and mouth don't actually close! surgery will probly be needed, we only found out when he aged out of the system at three... tough stuff sister! I don't even know you and I feel for you.. the only thing you can do is keep your child coming first! Great job and good luck!

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  3. Ahhh, sweetie. I'm so sorry. I do understand at least a little bit with the allergies and everything. Little Man will grow up, he'll cope, you'll cope, it'll all be ok...but in the meantime it really, really sucks. (((hugs)))

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  4. I'm so sorry. That is really a tough situation. Really, what comes to mind is that life is never, ever what we expect it to be. Nothing. Parenting, marriage, just life in general. It keeps us hopping and growing. Stretching. What I have to always keep in mind that Heavenly Father knows us and he knows the whole picture. We just don't understand our struggles in our small, finite point of view. Things often seem unfair and unjust, but we just need to be patient (hard, huh), and trusting. WE need to keep plugging on, even when it seems so futile. But it's not. It never is if we remember that Heaven;y Father knows what's best.
    I'll keep you in my thoughts. Sometimes just knowing people care is what it takes to get up the next morning and to keep on going.

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