Thursday, July 31, 2008

This was a 1% day

Actually, yesterday and today were 1% days. My daughter Becca has Down syndrome. She is a joy. She's an imp. She's turning 4 tomorrow! But, the private preschool she has been attending for two years doesn't want her anymore. There's lots of ways to sugar coat it. Lots of ways to look at it logically and reasonably. But it hurts like hell and I've been crying and not feeling terribly inclined to be rational.

I read an article on Pinwheels yesterday that just resonated. Most of the time it's pretty easy to just enjoy my beautiful daughter, to laugh with her and celebrate her successes. But then there are those moments... As if someone just can't let it go, and wants to make sure you do realize your child is not normal after all. (what's the tone I'm looking for? Huffy, snorting thru their nose)

I had approached the school director and the 3's teacher on the playground. I said I wanted feedback on how Becca had done that summer. (You know how you practice these conversations in your head, looking for the best possible opening) And yes, I did want to know where they stood on letting her continue in the fall. But I also really was interested in how she had done. Was she washing her hands at the kid sink by herself? Was she playing as nicely with the other kids inside as I'd seen her play on the playground? Things any mother might want to know. But I never got any of those answers.

All they wanted to tell me was that she kept trying to 'escape' and that they couldn't give her the attention she requires. Which may well be true. And I don't want her in an unsafe escapable environment any more than they do! But they found a knife to twist around just to make sure I dropped the subject and left them alone to their normal lives. I said I wanted to find out how Becca was progressing. And (using aforementioned huffy voice) the director told me "Well, she's progressing for Becca."

Maybe no one else will understand how much that hurt. How she's progressing for her is how I always try to look at milestones. It was so wonderful when she started eating solid food at 2 1/2. The whole family (and her teacher from the previous year) were all thrilled when she started walking at 3.

The director's comment, and her tone especially, just said "It doesn't matter what she can do, or that she can do more every day. The fact is she'll never measure up."

And I think I've been in a tailspin ever since because that sentiment "is that last 1% - the feelings that I keep buried and hold secret, sometimes even from myself. That 1% is like the sun. It hurts too much to look too closely at it, and I know that if I look at it too long, it could blind me in the amazing way that I now view life."

Tuesday, July 29, 2008

Oh, and one more thing...

What to call a blog... What to call a blog...

There is a cute email story that gets passed around from time to time. It's along the lines of - a mother looks at her watch and says to herself, "It's time for bed." So she gets up, cleans the kitchen, makes lunches, preps backpacks, puts the dog out, throws in a load of laundry, etc, and finally goes to bed. And the punch line being, a father looks at his watch and says "It's time for bed" and lo and behold goes to bed!

So first, this title is what the mother keeps saying to herself.

And then as I thought about it, it is also what life keeps telling us each day. Surprise! Don't get too comfortable! There's more!

The biggest shock I've had in my young (37 yo!) life was finding out my yet unborn daughter had Down syndrome. She's almost 4 now and doing very well, thank you. But boy was that an adjustment for my husband and me. Now, she has her challenges, but she is such a blessing of joy and happiness in our lives.

More recently, just 6 days ago, we found out our 6 yo son has permanent, moderate hearing loss in one ear. Hopefully, as the doctor predicts, this will be a mere inconvenience for him in his life. God willing. But it was definitely 'oh, and one more thing' in my life. Follow up tests, monitoring to make sure the loss isn't worsening. Talking to his school, what if any changes will be needed in his classroom.

I think bedtime just got a smidge further away!