Monday, April 30, 2012

Yeah, I prayed over the phone.

I did two really revolutionary things today:

1. I prayed over the phone with a friend (Can you say, Bible-Banger?!)
2. I prayed before Lily's IEP meeting (If you are familiar with IEP meetings, prayer seems like the only viable counter measure)

I know praying over the phone may sound really weird and maybe you are thinking that I have finally become that insufferable, Jesus-y church lady, who runs around saving heathens and planning church bake sales and praying in the grocery store.

I should get a headset. For next time. 
But, it isn't weird. And I have always been that insufferable, Jesus-y church lady; (you just haven't noticed that you've been saved!)

My good friend Stacey suggested we pray this morning. I had just told her about my IEP-anxiety, rage and generally bad feelings. We have a big IEP (Individualized Education Plan) meeting once a year for Lily. It is a time when we sit down with her teachers, support staff, the school nurse and a member of the Child Study Team to analyze all of Lily's progress and lack of progress. It is a hard time to be a mother--I have to check my ego at the door. And I have to stand firm in what I believe my child needs; while keeping an open mind to her teachers' thoughts.

Lily has been analyzed by developmental specialists her entire life. She was a 29-week preemie; so we have post-NICU developmental follow-ups. And then, of course, Lily had a brain tumor and subsequent brains surgeries and radiation. Following surgery and treatment, therapists would classify Lily on a their developmental scale. I loved hearing that my 15-month old, who just battled a brain tumor, had the motor skills of a 5-month-old.

I mean, I loved it. I loved it so much that it made me want to puke and scream and rip my hair out. In Lily's medical file, there are many evaluations that we ripped up or spots that are redacted with a black Sharpie. To me, Lily was not a 15-month-old who motored at a 5-month-old level. Lily was a 15-month-old, who just had her brain cut open and a tumor removed.  How the hell was she supposed to move?

At school, IEPs follow similar levels and patterns. It is maddening as a parent to have your kindergartner compared to a 4 year old. Or to worry that all the other kids are writing at a Level 7 and your child is at a Level 4. All of these constructs are bullshit--and maddening: people are not levels or grades or developmental ages. People are people; children are children.

So, today, I woke up with a giant chip on my shoulder. I kept thinking, maybe today they will compare Lily to a Pre-K student! Or maybe today they will remind me again that she has ataxia. Or maybe we will spend 45 minutes discussing the importance of coloring in the lines (by the way, coloring in the lines is not important. ).

And of course I took my cause to the phone; to Stacey, who reminded me, as Joyce Meyers once said: to take it to the throne.

And we prayed.

Prayer, as I've noted before,  is not magic. We did not pray for Lily's IEP to show that she was a genius or for some sort of magic shift in the policy and language that plagues IEPs. We prayed for understanding and peace.

And I got it. And I lost it, because I had a few hours before the meeting.

Then I prayed again in the car on the way to the meeting.

And I got it again.

And you know what: I had a positive attitude. I listened and I asked. And I saw, truly, for the first time, how much the teachers adore Lily--how much they love all their students. I asked questions on how to do things better and I was honest about my own struggles as a mother (flash cards, sight words and being on time). And I found advocates and friends.

They were always there. I just was not listening or looking. I was so wrapped up in my own mind; that I did not see what has always been sitting right there.

So, yeah, I prayed over the phone. And I will probably do it again, when I call Stacey to thank her for reminding me that the right time and place to pray is now.

P.S. Lily, as it would seem, is in fact a little genius, who adores math and hates flash cards.  She is also working on a running long jump. Pretty damn good for the kid who didn't walk until she was 3 1/2.

2 comments:

  1. Yay for you!!! So glad you went in with the open mind and look what it did!!! Hallelujah!!! Praise the Lord.
    Thank you Jesus. Is that churchy enough? Love ya.
    Aunt Ginny.

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    Replies
    1. LOL!! Love you too. And yes, it was great. ( :

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