Monday, October 13, 2008

Well, just 2 months later!

Before my last post, my father in law had gone into the hospital for surgery for colon cancer. The surgery itself was successful, but he had complications in the hospital. It's a long story, but over 3 weeks he declined, went in and out of a coma, and died on August 27th.

I tell people I feel like I blacked out for a month of my life. There was so much going on, we were actually away on vacation the 1st week of August. Then the kids were home out of camp for a week before school started, I went to the 2nd annual Flordia Down syndrome Conference in Orlando. Went straight to the hospital when I got back Saturday night. The kids started school. My husband was at the hospital, I was at the hospital, my mother in law was at the hospital (and therefore not providing the childcare she normally does).

It was so heartbreaking when my FIL died. We were all in shock and dismay. Putting together the viewing, the funeral, then starting to go thru paperwork and records and finances. Clearing out his law office. Getting Joey a 2nd hearing evaluation. Trying to work somewhere in there.

I blinked and a month, 2 months of my life have washed away like waves on the beach. I have only the big memories, I don't know what went on day to day.

Tuesday, August 5, 2008

A new favorite

This isn't that new, but it's new to me. I found it through some links about Vicki Forman, whose son Evan died recently. I'm tagging it under 'Truth' - a high compliment.

The Mother at the Swings

I've been on both sides of this conversation. Actually, I'm still more uncomfortable as the mother looking on. Now that Becca goes to a special needs pre-k class, we meet all kinds of kids. I'm really curious, hopefully not in a bad way, about each of their stories. Becca wears her diagnosis on her face, but with most of the kids in her class, it's not obvious. I'd like to be able to ask the other moms, So why is your child in this class? Tell me your story, and I'll tell you mine!

Friday, August 1, 2008

4 Trips to the Ladies Room at Red Lobster

I decided it's time to give full potty training another concerted attempt. I pulled out the little notebook I've used in the past where I keep track of times & results. The last 'full out' attempt was over Spring break in April.

Becca (4 today!, with Down syndrome) has been living a dual life since then- kind of potty trained, but not really. She can go on the potty, and if you put her on at the right moment she will. But she won't generally tell us when she needs to go. So she is still in pull ups and we've tried to catch her at the right moment as often as possible.

So I went into full 'Joy Joy Joy' overdrive mode today. There's an old Dave Barry column on toilet training his daughter. Every one in their house is happy! So very happy! You need to go pee pee? Yay! Let's run to the potty! It's so fun to sit on the potty! Let's read a book! You went on the potty! Hurray! Let's put a sticker in your book! Joy Joy Joy!

Got out the stickers, got out the big girl pants, got out the plastic over pants, paid attention to what she ate and drank and when. Took her to the potty. And again. Dry pants. Clean pants. Try again. The morning was discouraging. But there was a turn for the better in the afternoon!

At 12:40, Becca walked into the bathroom as I was walking out. I told her "Mommy had to pee pee!" (Remember, Joy! Joy! Joy!) and she said "Becca too." Well whad'ya know. I put her on the potty and she went. She only had wet pants one more time today.

We went out to dinner at Red Lobster. I put her in pull ups. Right after we sat down, she signed and said 'Potty.' So I ran her to the potty. But she leaned too far forward at one point and the durn thing auto flushed and scared the bejeezes out of her. So no glory. Back to the table. 3 more times we did this. She was still dry, she'd tell us she had to go, I'd take her to the ladies room, but she was too scared to actually relax and go. She stayed dry the whole time. She was even still dry when we got home! I ran her to her own potty and she went! I am so proud of her!!

Is this it? Is it really going to happen this time??? Time will tell!

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!