Tuesday, June 09, 2009

what i've learned, part 1

Silas will be one next week. Silas's first year has changed me; if Asher and I bonded gently, in the quiet and stillness of our little apartment, Silas and I bonded (bonding is not a good descriptor - cemented sounds more accurate) like soldiers, having survived together. Because of this, the past year has been fruitful, and in honor of his first birthday I'm going to write a series of posts on what I've learned. I hope you enjoy them.

Dear ENT's office,

Hi. You were pretty good today, much better than the allergist. You were efficient, moving us from the room marked "allergy" to "audiology" to the doctor, and even with intake paperwork (yes, my son is single, no, he is not employed), we were out in just over an hour. I'm impressed. We've seen a few specialists now - cardiologist, allergist, now you - and you get the job done.

I only have one gripe.

I could not get a straight answer from you about my baby's hearing. And I bring this up because it's not that you didn't have a straight answer to give; it's that nobody wanted to alarm me. I saw the flat line just like you did - do you think I don't know what a second (older, supervising) audiologist entering the room and repeating the test means? It means he couldn't hear. My baby couldn't hear. I asked you, and you said it's hard to tell at his age, there's no way of knowing for sure. That's bull, and you and I both know it. I asked your supervisor, and he said the doctor will go over the results with you. But the doctor never asked if I had any questions, he walked out as though he was going to get something and never came back. I asked the nurse about the hearing test, and over her shoulder (from the hallway) I heard, "Tell her it was inconclusive."

Bull.

I understand that assessment takes time, and that you need to be able to gather information before you can answer my questions. I used to do the functional tests that landed nervous mothers in your office, for crying out loud, but you don't know that about me. You don't even know my name. In the world of professionals who serve my children, I am Mom - Mom only. From my sons the word is a blessing, but from the office assistant, an insult. But whatever - losing my name is an indignity I can accept, because it is true.

I am his mother.

I am the one who held that three day old baby in the the doctor's office, watching his little mouth turn blue, then pink, then blue again. I am the one who strapped him, six months old and screaming, to my chest while I cooked dinner, knowing that the only hope I had of soothing him for the next several hours was to hold him as close as I could. I have cleaned up projectile vomit, massaged blood back into his tiny blue toes, and stared at the little welts on his face, trying to decide if his lips looked more swollen, or less, than they were thirty seconds ago. I am his mother, and I am much, much stronger than you think. You wouldn't tell me the truth because you were afraid of me - that I might cry or accuse or despair, and then how would you respond? I know that because I used to be afraid too. Parents would say certain words, ask certain questions - Do you think he is autistic? Do you think he'll ever walk? Do you think he's mentally retarded? - and I would blow them off, too. It's too soon to tell, I'm not qualified to answer that, ask your pediatrician. I didn't want to upset them. I didn't know what I know now - that they were always much stronger than I thought they were.

I know more than you think. Don't you think I know his hearing is affected by the fluid in his ears? He only turns to one side in response to noise, and his babbling is garbled, full of "l"'s that don't belong. I saw the flat line, but I also see him jump when the vaccuum is turned on, cry when the dog barks, smile when his name is called, dance to a commercial. I know he can hear, and I know he can't hear perfectly. If you had talked to me, rather than trying to protect me - assuming I am fragile when I am not - you could have known that too.

Most importantly, I know he'll be okay. His hearing will clear up once the tubes are in. And even if it doesn't, he'll still be fine. He is God's child, and he will be okay. Because if there's anything I've learned in the past year, it's that my baby and I both are stronger than we look.

Sincerely,
Stephanie

7 comments:

ljkgates said...

Amen to that! I am so proud of you, you are such a wonderful mother.

Baron said...

If it makes you feel any better (and it won't - I know that) I failed those tests the whole time I was growing up. I still can't hear all that well (ask Jessica). I didn't say more than a handful of words until after I was two, and I was finally diagnosed with substantial hearing loss in one ear that, later in life, has migrated some of its lousy-hearing into the other ear (probably because I listen to things loudly to compensate, thus damaging the hearing in my "good ear").

If I had to guess, I'd figure I'm down to 60% (total) or so of what I should be hearing. It's still worse in my "bad ear", but you learn to adjust when you can't hear that well.

That sounds bad.

But I say all of this to say that I feel I've led a fairly functional and pleasant life, despite having bad hearing. I can listen to music, have a conversation, and operate in a business setting.

I can't eavesdrop on people in the next room, listen to the TV if people are talking, or hear people whisper, but in the grand scheme of life, I say "meh" - and I mean it.

If Silas is learning to talk and responding to you, it's probably not as big a deal to him as it is to you. At least, that's how it was in my house. I never noticed it much because, well, that's how it always was. My mom, on the other hand, had me in what I called the fridge's every few months and seeing a number of specialist's to see if it would ever get better.

It didn't. And when I finally started talking, learned to quit mumbling, and got on with life, she sort of forgot about it.

Again, I am not minimizing his condition or your reaction. Rather, I'm sharing something similar from my life. I hope it serves you in some small capacity.

Exit Story: Beethoven composed some masterpieces completely deaf. I'm happy to be able to hear (most) of them...

Stephanie said...

Thanks Baron. I've had a couple of people call today to check on me, so I guess I should clarify - I was more frustrated in the way information was handled (or not) than in the actual information. I already knew that Silas could hear, and that he couldn't hear perfectly. I'm really not worried about him in the long run, and I'm really fairly certain that whatever hearing loss he has now will disappear once the tubes are put in.

My frustration was in the way we are treated as mothers in the pediatric health profession (my present pediatrician excluded, because she is the exception). I'm seen as "Mom" - I'm called "Mom" by the staff, and it's assumed that I will be irrational, bitchy, tearful, or unable to comprehend complexities of any medical situation. That I'll go home and google the results and despair ... I'm not that woman, and I'm frustrated when I am treated that way.

Baron said...

Well, then consider my hearing past to be TMI...

I'm glad he can hear, because, although I downplay it, it is quite annoying at times. But, I'll take a little hearing loss to some of the things other people have to live with.

As for docs and how they treat their patients and their families, I won't publish my thoughts... I'll just say they could use some PR help.

The Review Lady said...

Beautifully written post. When will he have the tubes put in? Will he be put to sleep? Let us know how we can pray for you.

(It's such a shame that medicine seems to be the one industry where customer service doesn't matter. How they treat you, how long you wait, doesn't really matter because they know you'll be back. And if you don't come back, someone else will.)

Madame Rubies said...

I am sniffling and have ACTUAL TEARS here in the church media room. At least Haydn is distracted by Gameboy and hasn't asked why I am crying.

wheelsonthebus said...

we're going through the same thing here with two of my kids. i'm sorry to hear you are, too.