Hello Hello

Monday, February 26, 2007

Can you hear me now?

The summer before your oldest son starts kindergarten, move to a new city. New school, new house, new pediatrician, new everything.

Tell the new pediatrician you will need a new referral to a new pediatric ENT. Your oldest will be in between the second set of tubes and the third at that point. He had the myringoplasty in your old house, in your old city, with your old ENT. Get really good at rolling these medical syllables off your tongue. Oe-toe-lare-en-gah-loe-jest. Mare-in-go-pla-stee. Tim-pan-oe-pla-stee. Forget which of those last two your son had. Wonder if it makes a difference in the retelling of his medical history. Hope it does not.

Your son will have a wicked infection partway through kindergarten year. When it is gone, he will be left with moderate to severe hearing loss in one ear. It will be his right ear. Start referring to that ear as his Bad Ear. Start referring to his other ear as his Perfect Ear. It is, after all, and he will rely on it a lot.

Go through the whole rigmarole. Get him a digital behind-the-ear hearing aid for the Bad Ear. He needs it for school. He will hate it. He will be exhausted when he comes home every day. The audiologist will tell you this tiredness will ease. Believe her, for it will.

Ask pointed questions of the ENT. The Oe-toe-lare-en-gah-loe-jest. She will say this sometimes - rarely, but sometimes - happens with viruses, this hearing loss. She will classify his hearing loss as sensori-neural. She will offer bad news and good news. Bad, there is no fix for the loss, only amplification for what hearing remains. Good, there is no reason to think this will progress. Later on, you will wonder if she really said that, did you maybe misunderstand her. But that day nurture this small tiding, this kernel of good.

Years will go by. Two, to be exact. During this time, your son will have his third set of tubes, T tubes this time, followed quickly by a fourth, again T tubes. Tee-toobs. He will also have periodic audiology exams. His hearing will never change, but his ears will grow so his aid will need new earpieces.

When you go for the six month follow-up for the fourth set of tubes, smile when the ENT says when these come out, and one will come out today, we won't replace them unless he starts having infections bam-bam-bam again. His ear bits have grown enough, she feels, for infection to clear them. She won't say ear bits of course. She will use more syllables. Yoo-stay-shun toobs. Decide since you are about to graduate from needing her, you don't need those syllables. Decide to stick with ear bits.

Start the new school year, as you do now, with another audiology appointment. The audiologist will take a new mold of your son's growing ear so the hearing aid won't fall out. She will also comment on how much the rest of him is growing. Beam. You will like this woman. She will tell you she doesn't need to see him again until spring unless you have an issue with the hearing aid or something. Decide this is how your relationship will be now, two visits a year. She will wish your son luck in the second grade, and he will show off for her in some way. He will like this woman, too.

In the dead of winter, your son will casually say his hearing feels "weird". By now, two years later, you have had the hearing aid fixed and/or adjusted several times. You will assume this is the culprit, this small electronic device. You have never trusted electronics entirely. Later that same day, you will watch someone talk to your son with no background noise, and you will see your son nod and smile, and you will know he is faking it, that he does not hear her. Curse the hearing aid. Not aloud, though.

Make an appointment with the audiologist. Take the youngest with you. Your husband will be at work, no reason for him to take time off for what will no doubt be a quick send-off of a dead aid.

The audiologist will greet you and your boys warmly. She will like you, too. She will look in the oldest's ears and check the ear pressure or something with a little device stuck inside his ears while you keep the youngest entertained with a magazine from the waiting room. The youngest will behave brilliantly while she does this and only look up briefly when his older brother goes into the soundproof booth for an audiogram. Pay no attention - you've done this a thousand times before. OK, maybe twenty. Twenty-five. But still.

Realize a few minutes into it that the audiologist is doing a longer evaluation, with more opportunities for your son to respond correctly. Realize she then is doing a beep test, too. Begin to get not nervous, but, well, OK, get nervous. But just a little.

You won't be able to try to make eye contact with her. You will need to keep the youngest quiet, which happily will not be difficult.

When your son comes out of the booth, she will give them both little plastic jars of bubbles to blow. For a second, you will be distracted, thinking about how charming they are. Then she will turn to you. She will have an odd look on her face. Try to decipher it.

When she begins to speak, time will go to slow-mo. Several times, you will wonder if you are really here, really having this conversation. This is what you will take away: Bad Ear gone from 30-40% to 10-20% hearing. Sound fluency down from 80% to 60%. You will slow-mo nod, and slow-mo say, it's worse then. She will still have an odd look on her face. Continue to try to decipher it.

When her mouth opens again, this is what will come out: thee-left-eer-is-all-soe-bee-geh-neeng-too-looz-hee-ring. Translate these syllables and say, "Wait. What?" When she tells you that his Perfect Ear is down to 80% hearing, that low tones are completely gone to him, try not to scream. In an ironic twist, thank God your oldest is too hard-of-hearing to have heard her say that.

She will dodge your questions, of course. She can't explain it or say how far it will or won't progress. No, he hasn't had an infection, she understands that. Yes, his tube in that ear is still in place and open. She will say you need an appointment with the ENT, who usually books a month or two out. The audiologist will make an appointment for you to see the ENT seven days out. She will tell you to get your son's IEP changed to include an FM system. Nod. You will be too stunned to say goodbye, but since you will also see her in seven days, you can do that later.

Take the children to Baskin-Robbins. Sit them inside at a window table, then step outside, inches away, and call your husband. Stun him. At his place of work, he will go into slow-mo mode, too.

When the children finish their ice cream, take them home and let them play in the backyard. Stand at the kitchen window and burst into tears. You will do this a lot in the days to come. Some tears will be angry, some will be fearful, but most of them will just be sad.

You will also, I am sorry to say, wake up in the night to throw up. Multiple times. Multiple nights. This is how stress affects you; you knew it would happen.

Spend the next few days thinking of nothing else. Research in the day, research in the dark. Wonder how something non-progressive could turn into something progressive.

Stare at your son a lot as he sleeps. Whisper, "I love you," and feel the pain like a dagger in your heart when he doesn't stir, blissful in his slumber, unaware how desperately you need him to hear you.
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