Friday, August 31, 2007
And a word I don't usually hear - especially when visiting CHEO with Paige. But, this week, we heard it! Paige's last surgery for skin grafts in her ears has worked, and her hearing test was....NORMAL. Pretty cool.
We were very happy to learn that her hearing is back on track, after nearly 6 years of iffy results, and not so good news about it.
Although not a huge fan of the world normal, in this case, I will take it!
But, please, let the record show, that my little girl is exceptional in all other areas...only her hearing is normal. Her smile...off the charts. Her blue eyes...breathtaking. Her laughter...it could end wars. The way she plops on my head, and says "momma" in the morning when I am still sound asleep....priceless. The number of lives she has touched...unimaginable. The love she inspires...immeasurable.
Production would go up. Employees would come in with a smile on their face. They'd probably never call in sick - they'd never have to leave early for a doctor's appointment. Most likely, they wouldn't demand a raise (as long as you continued to pay them the same rate as you did for the archaic 49 work/3 vacation plan).
Think about it. It might just work.
Wayne and I rented a cottage last week, and took the girls away for a few days. It was glorious, and something we should do much more often. We try to be good parents, and we keep our kids busy and active, but the one thing we sorely lack is our ability to just s-t-o-p and relax more often.
Admittedly, that should say that *I* am not good at relaxing. Wayne manages. I'm a multi-tasker by nature - as is evident by the 7 windows that are open on my computer at this moment. Oops...make that 8 - the fax just rang.
Don't worry, though, I'm not neglecting my children - I'm at work - I'm just neglecting my job at the moment :)
It was so nice to have a few days where we slept until we woke up, went to bed when we were tired, went to the beach when the sun shone, and played board games when it didn't. It was so wonderful to sit by a fire at night, and be mesmerized by it. To just...sit and enjoy our family. To be anonymous in a sense - just a family on vacation.
I think parents now are victims of doing, doing, doing all the time. Our family isn't nearly as overbooked as some I know - with many involved in multiple activities for multiple children all at the same time.
We've often joked this summer with friends of ours if it didn't make the big calendar that keeps our lives organized, then it most likely got forgotten.
But, after our vacation, I think we need to take a big black permanent marker and circle a week or two of summer, and not let anyone write in those squares.
There's something to be said for doing nothing. Its the one thing I don't do nearly enough.
Saturday, August 18, 2007
And Camille!! Well...let me tell you - when Camille comes to visit or goes to Paige's school, or meets us for swimming, Paige takes about 3 seconds to make her way over to her for a GIANT hug that usually results in Camille sitting right down on the floor and soaking in the Paige-love for a few minutes.
Paige will hug and squeeze her, and say "awwwwww" to her for as long as Camille will hug and squeeze back, which is usually quite a while!
I'm so lucky to have such wonderful friends - friends that enjoy Paige's sunshine as much as she does.
Monday, August 13, 2007
She's got a bit of a chocolate mustache, only for some reason, Paige always makes upside down mustaches - that is, its her bottom lip that gets the 'stache, not her top one. I guess its probably due to the underbite she has.
And, intermittently, she is holding our her spoon and looking at it in the sunbeam that is coming through the window. She loves sunbeams, and moves throughout the house during the day to play in them with her toys.
Her therapists would tell you that it is because she is autistic that she plays in the sun like that - that its one of those quirky behaviors of kids with autism.
But, maybe she just likes the sunshine - maybe she likes the way it warms her skin when she sits in it, or the way she can make shadows in it, and watch her finger puppets dance on her legs.
When her pudding is done, she will come to me and ask to have her hands washed - she doesn't much like dirty hands. Neither do I.
And off she'll go to find her duck toy, the one that said 6+ months on the box when we bought it for her for her 6th or 7th birthday. She'll take Mr. Duck and spin around with him for a few minutes, as she listens to the music he always plays for her.
If I stay here much longer, she'll come and ask to play on the computer. She loves starfall.com and can whiz through much of the website. Funny, she can't tell me where her nose is, but she can put together a puzzle or zip through a maze like nobody's business.
After a bit, we'll wander out to the deck, paper and pencil crayons in hand, where we'll draw funny circles, and practice writing her name. And I'll smile as she makes the letter "i" three inches longer than the rest of her letters, and circles the top part of the letter "g" two or three times before she gives it a tail.
And those silly legs of hers - long and thin "first grade legs" we call them in our house - well, maybe she'll cross them again like a lady. And maybe she'll just swing them as she draws - a happy, carefree sign of childhood.
Perhaps she'll fold them up under her "Indian style" or put one leg on each arm of the big chair she is sitting in, reminding the world that she has Down syndrome, and is incredibly, crazily flexible.
For me, it'll just remind me that she is my daughter - precious and perfect in every way.
Friday, August 10, 2007
Thursday, August 09, 2007
We have two competitive teams that travel - one is a group of 9 & 10 year olds that are really pretty good. But, this is their first year, and they are working on basic skills of the game.
They were in the district playoffs a few weeks ago, and did really well. They didn't win, but they held their own against the kids who eventually went on to win provincials.
Anyway, during the game, one of our guys noticed the coach from the other team giving signals to the batter - a practice we haven't conquered quite yet.
At the next game, this little guy says, "Oh, yeah, and their coach was making all these signs..."
As he is saying it, he is blessing himself with the sign of the cross. Then he goes, "like we don't know what that means, we go to church too!!!"
Wednesday, August 08, 2007
Its been nearly 2 weeks since Paige and I returned from New Hampshire. Dakotah stayed behind with my sister. Tonight, we are going to meet them halfway to pick her up.
Typical of a teenager, this child can drive me crazy! Most especially with her having mono over the last three months - we have spent every day together. She is a 'velcro' kid, and likes to be near me when she is home. If I leave the house, she wants to go - if I go from one room to another, she follows.
She and I are close, and there is very little about her every day life that she doesn't share with me, right down to the last minute detail. I know every detail of who likes who, which friend of hers got new shoes, you name it.
There are times when she says my name that I have to close my eyes, take a deep breath, and then say, "what, Dakotah?"
Sometimes when I say my prayers at night, I simply say, "Lord, give me strength to get through the next few years." I long for peace and quiet for just 20 minutes, when I'm not be demanded upon. I crave those days when I'm older and my house is quiet again for a while.
So, I knew this little break would do us good.
Because, my goodness...I miss her. I miss her a lot. She spent a few days on Prince Edward Island, where phone contact was limited.
I nearly went crazy. I want her back. I want my little girl/big girl back home. I can't wait to hear every detail of the last two weeks, and to plan out the rest of our summer together.
She starts high school in a couple of weeks. She is planning a trip to France in her Junior year and a trip to Italy in her Senior year.
And in four short years, I will be sending her away to University. And most likely, that will be far away, in New York City or Boston.
I want her to take me with her - to watch every detail of her beautiful life unfold. I want to see her grow, and learn, and be there to pick her up when she falls.
I want the world for my lovely daughter.
Saturday, August 04, 2007
Since Paige has been born, I've always been somewhat puzzled about human development and human nature. We try to be so politically correct, and so unbiased, and so accepting of people who are different, whether it be because of race, religion, color, ability, etc.
But, I sometimes feel as if I fall very short of that non-prejudice way that I am supposed to be living.
I wrestle with a lot of things when I consider Paige "disabled." Even more so in the last year, as we have received an additional diagnosis of autism, and as I have been reading so much about autism itself through the eyes of a person who is autistic. Amanda has made me re-think so many things, and has made me realize maybe I haven't been that far off in the things that I have considered.
Like most parents of a child with T21, or other developmental challenge, I have, at times, felt very guilty and very much like a bad Mom when I haven't been rigid in my "training" of Paige - when I have let a therapy slip, or tossed away an afternoon by playing in the pool instead of working on letters or speech, or behavior.
I think for all of us, there's always this nagging thought that we could have done just a little more...and if we did, maybe our kids would be just a little farther ahead in their progress if we did.
But, here's the rub...
I have always accessed all of the available services for Paige - OT, PT, SLP, hippotherapy - you name it, we have faithfully signed up for it all.
Yet, here I am, the mom of a beautiful, intelligent little girl of 10 who does not speak...who by all accounts, is perhaps at around a 3 year old age level in all areas (except speech, of course).
What I wrestle with, though, is this...
Maybe, just maybe, its quite o.k. that she is developmentally 3 years old. Maybe, just maybe, that is exactly how God has intended her to be. Maybe she's not broken, and maybe I shouldn't be trying to glue the pieces back together.
We all say we want our kids to be happy. Would Paige be immensely happier if I were able to train the T21 or autism out of her? I'm not so sure she would be...because she seems quite joyous just as she is.
Is it fair for us to strive so much to bring our kids closer to "normal"? Or is it simply our desire to have them be more "normal?"
Obviously, we should be doing everything we can for our kids to help them achieve their best, just like we would do with our typical children. But how much farther should we go...how much harder should we push kids with developmental delays?
At what point does it rob them of their ability to be "normal" in their own context? Amanda writes often of liking herself just as she is, and wanting to be accepted just as she is; she doesn't require fixing.
We really must not forget the benefits of a good giggle fest on the floor of the living room, or a strawberry dipped in whipping cream just because it tastes good, not because it helps with oral motor skills.
We have to remember the joy of reading for the sake of reading, not just as an essential quest to allow our children independence. Bubbles in the bathtub are just as beneficial when they are fun and silly and making Santa beards as they are when they are part of speech therapy.
And while we are at it, we need to give ourselves a break about being perfect parents. Because you know what? Perfect parents of perfect children have kids that have temper tantrums in the mall, and cry over nothing sometimes, and strike another child because she has his toy.
In the video on Oprah, one parent worried about her son's "inappropriate touching" of strangers. He liked to hug people. Imagine the horror!!! Imagine how bad it would be if we got 50 hugs a day instead of two or three? Imagine when a teenager with autism claps his hands excitedly and cheers because he recognizes a song he loves?
I'm starting a campaign - I'll be that person who welcomes the inappropriate behavior of a person with autism or T21. If there's a song on the radio that requires a dance, I'll stop and dance - if someone wants to hug me, I'll take 10 or 15 seconds out of my day to receive and return that hug. If someone wants to teach me a tune that consists of a few repetitive syllables, I'll be happy to sing along.
In the meantime, for all of those people who try to train our kids out of inappropriate behavior who might be worried about job security, I've got a few suggestions for you...
Maybe you can work on the person who cuts me off on the highway and flips me the bird. Or who stands 10 feet outside the front door of a building and smokes at me. Or waits on me in the grocery store without so much as a kind word, or an acknowledgement of my presence. Or who stops and stares at me when I share a full body hug with Paige, that involves wrapping not only arms, but legs around my body and saying, "I love" over and over again. Or the one who swears at her child in Walmart out of frustration.
Maybe everyone needs to work on appropriate behavior sometimes.