Thursday, May 5, 2011

A good start...kinda

     I'm happy to say that I took my own advice today. I got up early, did some yoga, and ate breakfast. Truth time: I only got up at 8:00. I only did 20 minutes of yoga. And I only ate a banana...and two coffees. I had an appointment with Noelle's speech therapist this morning so it feels like cheating- I would have gotten up early anyways and had breakfast so my stomach wouldn't make any embarrassing announcements while I was stuck in that tiny, uber quiet room with just the two of us. But I'll celebrate small steps in the right direction.

     Speech therapy is proving to be...ambitious. If I follow everything they suggest, the sum of my entire day will be spent making exaggerated sounds and faces, coupled with signing and repeating the same words until everyone within a 10 mile radius of my house will find me excruciatingly obnoxious. I can no longer simply let Noelle enjoy her "Tubby Time." I was a terrible mother not to have realized that bath time is a perfect teaching opportunity. I now have to say "Bath Time!" {With an expectant look on my face} and wait for Noelle to initiate a reaction. Then I take her clothes and diaper off and wait {with an expectant look on my face.} Once she initiates then I let her climb into the tub and {with an expectant look on my face} wait. Once she initiates, I say "Water!" {making sure surprise and excitement is present in my tone} and turn the tap on to fill the tub. Then I'm supposed to poke my eyes out in sheer frustration {with an expectant look on my face.} She suggests that I do this for everything throughout the day. Problems: (1) Noelle is going to think that I'm an idiot. (2) What the hell am I supposed to do if she doesn't initiate communication? Let her sit naked in the tub all day? (3) I'm terrible at making faces; my "expectant face" is going to look like my "constipated face" I just know it.

     The rest of my day was marbled with stressful emotions that I haven't had to confront in a long time. I'm fairly certain that Noelle is having seizures; Nick is not as convinced- or else he just said that so I'd stop crying. We called her neurologist to see if we could bump up her June appointment and are still waiting for the reply. Before Noelle, I always pictured seizures as dramatic thrashing and twisting in contorted positions on the floor. In truth, they are far more subtle and challenging to identify. I was also shamefully uneducated about what to watch for (I should have Googled it sooner- who knew youtube had so many videos of seizures!) I have a heavy, sick feeling in my stomach; nothing is ever easy for us, for her. I remember dealing with the Infantile Spasms, the extended hospital stays, the tests, numerous medications, invasive needles every second day for three months, her bad reaction to the ACTH. How devastatingly close we came to loosing her. All day I've fought visions of repeating those ordeals and it leaves me feeling sick, my stomach clenching, my heart aching.

     Needless to say, today was not an appropriate day to give up Pepsi. I don't feel like jogging. And if I don't stop crying soon, then I'm going to take Nanimo bars out of the freezer.
Maybe more things will get crossed off of my list tomorrow.

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