This is sweet Suzie with her "purple bike." Yep...it's got three wheels...yep...it's got a basket...and yep...she's got a bell that she rings as she goes down the street.
And if you laugh or snicker at her cruising along on this piece of mechanical deliciousness, I will hop up on that Tremendous Tricycle of Terror and leave a trifecta trail of tire marks across your noggin...ringing the bell as I pedal away.
And in a sense that is much more more true than cliche, I can't believe it has been dozen years. Seems like only yesterday we were back at Batists Hospital holding our littleone wondering "now what?"
Some thoughts from that time twelve years ago...
So I thought maybe we could just drag out this hospital thing awhile. Like maybe eighteen years. Think about it…they have food, they have TV, they have people that are nice who help with things, and most importantly the place is fat with people who really actually know stuff about babies.
Stufflike “which end is up,” and what kinds of screams are ok and which kind of screams are not ok and most importantly of all they know why you must always and forever PROTECT THE SOFT SPOT ON THE TOP OF THE BABY’S HEAD LIKE IT IS FOUNT OF ALL THAT IS TRUE AND PURE AND HOLY. I didn’t even know that there was a soft spot, so you can see how important these people were to me.
But much to my chagrin, the hospital people were not to keen on my extended-stay plan. They had a plan too. Which, simply stated, was “you are going home tomorrow.”
So much for my thought about the hospital being a place full of people that are really nice who help with things.
Today was Suzie's "IEP day." And not just any "IEP day," this was her moving from elementary school to middle school IEP. This was the "leaving all we have known and become comfortable with over the last six years and toss it all to the wind and catapult her to a new school with new teachers and new everything" IEP.
And after I came home and caught my breath about all that is changing for her, I went back and read a couple of other posts about IEP's and Suzie.
This is from two years ago. And while I am still extremely nauseous about all of it, these thoughts from a couple of years ago were a good reminder of all we have to celebrate.
Tomorrow is Suzie's IEP.
For the uninitiated, an IEP is an "Individualized Educational Plan." What it boils down to is that there are stacks and stacks of laws designed to insure that disabled kids get an education that is appropriate and relevant to their needs. The IEP is the document that memorializes all of the plans, ideas, goals, expectations, notes, thoughts, etc, etc, etc.
We began having these when Suzie was three, in preschool. The goal of the IEP is to make sure that the parents (or guardians) are on the same page as the educators and that everyone is satisfied.
There have been books written about the horror stories related to IEP's. We were originally told that we ought to have an attorney and all sorts of stuff for the IEP's. Basically at this point it is us, the team of people who are involved in Suzie's education, and a few innocent bystanders.
The reality is that we are blessed to be surrounded by such a great group of people, who love our Suzie nearly as deeply as we do, and who are committed to help her get the education and therapies that she needs to live the best, most successful life.
More often than not the IEP for Suzie is a time to celebrate how far she has come, to think back three or four years when she was really struggling, and see how faithful God has been, and how gracious He is to all of us.
As I think about though, she and the other kids who walk alongside her in the "non-typical" club are not much different from all of us in that we all have an "IEP."
God has a plan for our lives, He has given us all unique gifts, abilities, strengths, and shortcomings. We have a history that has shaped and prepared us, and a future that is full of the unknown. And accordingly He has provided for a plan that is unique to us; all that we live through and experience allow us to be ready for what may come.
And just like with Suzie, we need to celebrate the successes and not wallow in the challenges. We are all made differently; none better, none worse. All fully created by a loving God who has given us an amazing life. It is our responsibility to live to the fullest what He has planned for us.
It's here again...it is Suzie's birthday week...And was we went through the list of who she "wrote down" on the list and made out the invitations, it reminded me of something from a while back about Suzie's birthday...and like I said before, maybe if you act nice, Suzie might "write you down" next year.
Well, we have finally reached the biggest week (for Suzie) of the year! It is her birthday week.
For the past two months she has been preparing. She put together a list of friends to invite on a notepad and has been referring to it several times everyday...
"You want to know who is coming to my party?"
"You want me to read you the list?"
And then, just as she has a hundred thousand times over the past couple of months, she launches into the her invitation list...
"Meghan, and Madeline, and Reagan, and Little Danielle, and Abby, and the other Abbi, and ...." and on and on it goes.
And then I ask her if I'm invited to the party. And every time she points to her list and says , "I wrote you down." Which means I am invited. Cause if she "writes you down," that is a huge deal in the world of Suzie party planning. And then later this week Suzie and a handful of friends that she "wrote down" will gather at Chuckie The Rat to play and celebrate.
Her parties are especially interesting. Firstly, because there are very few 11-year-olds having their birthday parties with Chuckie, and secondly, because there is always such a curious grouping of people. She will have pre-school kids, and 4th grade kids. She will have "typical" kids and kids with Down syndrome. She will have autistic kids and "regular" kids and wheelchair kids and everything-in-between kids. And there will be some kids that are not exactly sure why Suzie invited them because they don't spend a lot time together, but once Suzie "writes you down" on her list, you are destined to attend. And there might be a few kids this year who will feel a bit self-conscious because they will be the only 11-year-olds singing happy birthday to a classmate at Chuckie Cheese.
But I am not concerned about that, because Suzie will be smiling. And when she is smiling, the world is good.
So for now, we are on countdown to party. (And high-level prayer alert, because it seems that every year around her party the seizures start to ratchet up...one time, a couple of years ago she had a bad seizure at the top of the stairs and fell all the way down as she was having the seizure...so she spent the evening at Vanderbilt instead of with Chuckie...)
And if you see a smiling eleven-year-old having her party with Chuckie the Rat later this week, come by and say "Happy Birthday."
Cause if you do...maybe next year she'll "write you down..."
The AtwoodZoo is officially one animal larger today.
Seymour the turtle joined us. We discovered this handsome, yet clearly misguided box turtle on our driveway today. So we rounded up a large plastic tub, plopped in some grass, water, a couple of sticks, a carrot (i added that for some reason - maybe I forgot that Seymour was a turtle,not a rabbit) and then made a run to PetSmart for "turtle food."
So Seymour, with a belly full of pre-fab tortoise pellets, is sleeping away in his plastic tub on the back porch. I wonder what he thinks of pre-fab tortoise pellets. Pretty sure he has never had them before. (My guess is he will be with us three days and then back to the creek.)
Just another exciting day here at the AZ. You never know what will show up in the driveway. This afternoon it was two cars full of kids. But that is another story.
Sometimes there is more to life than what you see.
Case in point. During our little cave adventure last weekend, the tour guide showed us the giant chandelier hanging in the Cave.
Seems that the chandelier was built in Europe in the late 1800's. The chandelier is stunning, with brilliant light streaming through the thousands of hand carved crystals.
And I thought, I wonder, if in their wildest dreams, the guys who used so much time to hand carve these crystals, ever though that the thing would end up hanging in a cave in 300 feet below the surface of the earth in the middle of Tennessee.
And if by some chance, they knew that their beautiful chandelier was destined to light cave one day, would they have made it.
I contrast that with the amazing beauty and detail that God put in every inch of the cave. And He knew that only a relative handful of the people who ever lived on this earth would ever see the intricacies of the deep recesses of this hole in the ground.
But still, He chose to decorate the inside of this cave in an amazing way.
And unlike the guys who made the chandelier who, if they had been told that their masterpiece was destined for a dirt hole would have most likely said, "why don't you just run by Wal-Mart and grab a couple of lamps" He said I am going to make this dirt hole a masterpiece, even if it is just seen by a few people.
Because I am God, and that is what I do.
I'm not sure where all of this is headed, just that I think I need to trust the One who made the caves because He has thought out things in a bigger, more spectacular way than I ever could imagine.