Wednesday, October 10, 2007

I'll just have a water with a chaser of reality

I will post about Vegas tomorrow, but right now it seems so far away.

Part of your official duty dear Blog, is to act as my cyber-bartender. In the cyber-proverbial sense, of course. There are some moments that I need to write out in order to sort out, and therefore I need you not to act as a shrink, or priest or counsel of any sort; but rather just a casually interested observer who inserts an occasional wise, Hmmmm, while mopping the bar or drying a shot glass while I spin a tale of woe or wax poetic. I'm sorry if this didn't fir your job description, but you should have read the fine print of your contract.

And today's tale is of Amy. Please don't tell me all of the things I already know like, "She's going to be fine," or "It could be worse." Because my mind isn't suffering, it's my heart that's breaking and you will have no words for that.

We went to the doctor again today to discuss the latest hearing tests. It was good, in that I laid out all of my concerns from the onset so as to save time and circumvent the doctor-speak. I frankly tire of it easily these days. So we ended up having an actual discussion, which was both helpful and refreshing.

We discussed the steady decline in those tymps--the test that shows the movement of her eardrum. They were completely flat before surgery, and wide open immediately after so we knew there was improvement. And her speech improved, too. Over the last year she has made amazing progress, truly. But over the last couple of months those tymps have steadily declined again. Today they were absolutely flat. This affects her hearing. On paper, it says she hears the beeps in the headphones, but her doctor thinks the world must sound like everyone is Charlie Brown's teacher. He looked through her chart and declared, "She's never heard any differently. It's like you're starting from scratch."

I've said that same thing a million times, yet to hear him say it, confirm was like a knife to the chest. She will be four in 2 weeks, and I mourn this childhood that I don't think she's ever had. She tries so hard, and yet she can't seem to catch a break. And I watch her try with a maternal ferocity that I would have never thought a human capable of, and I want to keep her tucked under my wing protected forever because I don't want to offer a medical dossier every time a stranger asks her some rhetorical question and fails to get a response. I am tired of talking about it because every word of explanation is a reminder that I have failed her. And not that I am ethnocentric enough to believe that I could have transformed into a pediatric ENT over the last 2 years, but failing her because it is days like this when conversations occur about her in front of her, and that her milestones are measured by a nod, or a repetition of sound, that I am going to lose her to whatever this is--a disease? A condition? A something? A something that robs a little curly-headed girl who wants to sing and play. A thing that commands all of the attention so that no one notices Amy--only that she repeated something or startled at a loud noise. A thief of the things that other four year old girls do. And I hate that thing. And I hate that I hate it because I don't want to be distracted by it, because who will fight for her if my back is turned?

She gets the tubes placed back in two weeks. We think this will help as it did before. It won't be as bad as a year ago, and we know what to expect. And tomorrow I will have reconciled this and prepare with efficiency and strength, and I will resume my position as her greatest fan and cheerleader.

But tonight I just feel like missing that little girl who I can't ask what color she wants her birthday cake to be or where she wants her party.


JODI said...

"You must be proud to be different. Your only shame is to have shame". Trace, this is the quote I repeat often to my two oldest girls-- as they trudge through life with visual birth defects and one also with scoliosis...the most important thing with a child that has to over come a obstacle in life is to keep the "crutch" in the closest and remember for every hurdle they must jump God has great things waiting in life for them. I understand the ache of your mothering heart. The best part of being that curly headed girl is...she is surrounded by love, genuine love!

Tracey said...

Thanks, Jodi. I don't want to appear as though I feel any shame--I don't. I actually think I would be incapable of feeling that way. I am so proud of Amy--I just really feel awful that everything has to be so hard for her all of the time. I don't want the focus to constantly be on this one issue when there is a whole lot of sweet girl for the majority of the attention. Ya know?

JODI said...

I say that quote not for me (or you)--I've never been ashamed of my creations but for my daughters...b/c when you are kid you want to be "like" everyone else, somehow as a parent we have to make a child understand that there "difference" from the rest of the world should be celebrated since it makes the greatness they each possess. I would wear the burdens of my children to spare them, if I could.

Tracey said...

I gottcha. I guess what I was trying to say in that long ass rambling post was that I just don't want it to define her.