Monday, June 29, 2009

Can't Blame Her This Time

(Delayed post from June 19th)

Finally, I laid down, bone-tired, as they say. Long day of errands, wagon-pulling to parks, general pivoting between the polar opposite requests and preferences of my 2 charges. Ankle still slightly swollen and achy from a freak fall a few weeks ago.

Solid sleep was imperative. First, to ensure an increase in patience from the day before, but also because today is Michael's birthday. Surprises and other preparations must be complete by the time he gets home in the early afternoon.

I laid down and was immediately reminded of one of my early mistakes of the day. In my summertime laissez faire attitude, I did not stop Cate from eating a bagel in my bed. Her excuse, while it would not hold during a school year schedule, seemed plausible on a vacation morning. She needed to eat it on our bed so she could continue to watch junk TV on Qubo, while sewing 100 little pillows out of scraps of material. I still try and understand why we need so many colorful little puffy rectangles when I know of no head small enough to find comfort on them. But to Cate, it is necessary. And I'm sure she was trying to impress me with her industrious mini-me multi-tasking.

The fallout from the bagel was downy and soft at one point, but prickly and sand-like 13 hours later. Yes, it could have been anticipated and cleaned up. But I am not a bed maker. It seems fruitless to me. If Michael leaves before we roll out of the sheets, they stay tangled until bedtime again. So I forgot about the bagel crumbs until I sank into them last night.

I brushed away as many as I could, but in my state of exhaustion, did not have what it took for any thorough eradication. Once I made peace with the crumbs, pretending they were actually sand, that I had been to the beach and so the friction was good, I read and then ran through before-sleep random thoughts. This takes a while. I know I fell asleep for a short while.

Then the sky cracked - light was not the exception, but the rule for a few hours. Fat, rapid drops pounded the roof outside while inside looked like the sunniest day. Thunder threatened and growled, shook the windows in sudden and close swipes. Between, with the pillow over my head, I could block out the constant lightening and doze a bit. But only seconds, maybe a minute would pass before another smash that bolted me upright, out of the bagel leavings. After each, I waited for Cate and Addie to come rushing in, one of them crying, if not both.

But they did not come. Today Cate said she heard it, but that before bed dad told her to expect some thunder and lightening. That's all it took for her to make peace with it - forewarning. Must put that in my bag of tricks.

So I flipped and flopped, assaulted by noise, light and carb crumbles until the storm wore itself out. I thought that finally I'd fall into a renewing sleep.

Alas. Michael fell asleep first. He doesn't snore in the typical cartoonish way, but lets his exhale out with a little "PfP!" puff of his lips. Quiet and subtle, but rhythmic enough to demand attention. I shuffle around, try to get him to change position so I cannot hear it anymore.

Just as I am working on that, I do what I should not do. I look at the clock. 2:40am. The intake of the hour makes it swiftly from my brain to my stomach. My stomach can tell time in hours since it's been satiated. Hunger. Sleep-depriving hunger that is derived from being sleep-deprived. So unfair.

I don't know how long that lasted or when Michael stopped his birthday eve sleep-puffing because I did eventually fall asleep. Just before the alarm rang for me to get up and get to the gym before Michael has to leave for work.

As I yawned and lifted my meager weights at the gym, the justified haze lifted as a realization was foisted on me - I had a sleepless night - but my little non-sleeper parasomnia/apnea girl had NOTHING to do with it. She, her sister, her father, caught all the zz's necessary.

Good morning. Happy birthday. No, thanks, no bagel for me. Here are your surprises and cakes. Good night. Oh, and I love you through your crumbs and pfp sounds. Straight through.

Thursday, June 25, 2009

Counts

Belly up to a smokey bar, I sat between my future husband (though that had not been determined yet) and a friend of ours. This was probably 15, 16 years ago. It was an establishment busy on the weekends (which start on Thursday in terms of happy hour), but low key on this day. Probably a Tuesday or Wednesday afternoon.

Our friend seemed carefully placed where ever he was with the intention of providing counterpoint to anything perky. He spoke in a low, raspy smoker's tone, a cadence slow and peppered with dramatic pause and a killer Midwestern accent. His eyes were open as wide as I'd ever seen them at half-mast. His head hung on a slightly bowed neck, also suggesting energy meted out through only the smallest of openings. He held his cigarette still, slowly hauling it up for a puff after long breaks. The only thing that belied more focused and sustained energy may have been his ever perfectly coiffed salt and pepper hair.

On this afternoon, our friend Coop regaled Michael and I of his finite heartbeat theory. He reeled us in with each of its tenets. We half smiled, knowing that Coop intended both to entertain us and completely convince us simultaneously. Coop was usually highly successful in his attempts to amuse, maybe not so much in his attempts to sell his theories and tales of personal adventure.

According to the thinker at the bar with us that day, all living beings are prescribed a certain unchanging number of heartbeats when we are born. This number is unknown to us, and cannot be diminished or increased by anything we do. Our task is simply to chose how fast or slow to spend down our heartbeats. He maintained that smokers, drinkers and the "less clean" living among us spend them faster by choice. Those that choose to live virtuously are simply hoarding heartbeats to have a few extra when they are old. Exercise and cardio work is a bad idea - also burns through heartbeats quickly, but is considerably less fun than partying, in the book of Coop.

I have thought of his theory hundreds of times if not thousands of times since he unveiled it to us that day. I run situations up against it, play with it, think about how many heartbeats a glass - or a bottle - of wine costs... I wonder how many heartbeats my kids each have been allotted, how they will spend them. I joke with myself internally that Michael is squandering precious beats with his marathons and training.

I was made to think about it again yesterday when I heard the news that T. Christopher Cooper's countdown of heartbeats reached the single digits and then ultimately, reset to zero. Coop died early yesterday morning at the age of 46, the same age as my dad when he died. I wondered if the number was revealed to Chris at any time, if he got to count along as the numbers wound down. I chose to believe that he did.

Rest, friend. No more counting, spending, saving. You have made your mark in many places, people, hearts. We are honored to have cashed in some beats with you.

Peace.

Monday, June 15, 2009

This Week in Pictures

Mostly last week and a tiny bit of this week. Pictures have to be worth all the words usually found here. Summer is less about narrating than it is about doing. Sustaining blogativity will likely be a matter of my natural reflex to slip a camera between me and the good stuff.

Addie had a cold, but fun time at her end of the year class picnic. The treats were the best part.



When we came home, she and I considered the garden and hoped things would bloom soon.



The next day, our hopes were realized.






That same day, face-painted Cate had a blast at her own end of the year class picnic, as did I, as team coach of the single-bean-on-a-plastic-spoon transport challenge.




Which takes us to the next day, in which we thoroughly enjoyed an evening our local zoo set aside purely for the enjoyment of people with disabilities and their families. We ran into a lot of people we knew while soaking up the animal oogling and the peaceful twilight zoo train ride.





Addie was riveted by the traditional zoo attractions, but was not certain what to make of the blue-haired, stilted, woman with a high pitched voice.





After yet another sun/moon swap-out, it was time to say goodbye schoolyear, hello summer. Addie seemed to understand she would not see some of her favorite ladies for a while. The first is her classroom teacher and her idol. In the second, she is a bit more concerned with watching the shadow of her feet, but she sits on the lap of her special ed teacher, whom we all adore because she sees Addie with complete clarity and therefore demands the best from her.




Cate looks jubilant here as the final bell of 4th grade rang, but what she was unaware of then was the firecracker of celebration-worthy news she held on her back, in her pack, sealed in an envelope. Later we all whooped it up as we perused the girl's BEST REPORT CARD EVER! Now she too, knows what she is capable of.



Below, everyone awaits the arrival of Cate and Addie's 2nd family to pick them up. The Bautista's took them on an overnight adventure so Michael and I could have a lovely evening to ourselves (this is a "before" of Michael - he just went for a run and was to clean up for our dinner on the river just after the photo. K, pal? Good enough disclaimer to still post it?).



And the best event of all, according to our Fish Called Addie - we made it to "her" pool for the first time this season! She was so relieved that her joy still existed, that the beginning of hours a day in the water finally arrived. And Cate wasn't too broken up about it, either.




The girls are used to being able to splash around in our little pool at home after we get back from the big pool, but it is in disrepair and will probably require complete replacement. So we hauled out the...Slip n' Slide...by Whammo! (if you're old enough, you hear the mail order commercial in your head when you read that). Addie found it to be naught more than a really unnecessarily elaborate drinking fountain. Cate gave it a try a few times, but was still a bit ginger about it. The biggest kid in the house, the birthday boy of this week, seemed to enjoy himself to Addie's delight, though. Click on the photo so you can see Addie's gob open wide in amazement.




Better go charge the camera battery, we've got a fresh week to devour.

Tuesday, June 9, 2009

15000

Take a bow, Addison. 15,000 hits!

video

Monday, June 8, 2009

Two More Holes in Her Head

My sweet firstborn, Catriona, added 2 more holes to her noggin today. At Claire's.

We talked about getting her ears pierced for her 10th birthday next month. To be honest, she wasn't exactly bowling me over with incessant declarations of desire, so I was just going to let it happen, or not. But as I was thinking about what a great year she's had, thinking about how hard she's worked, all she's learned and all she's taught...and thinking about more practical things, like if she has to wear the studs for 6 weeks, earrings as a b-day present would be sort of a dud since she can naught but stick them in a drawer for a month and a half... So I offered last night that she could get them done whenever she wanted, if she was still interested.

Sweet thing just needed to be uncorked - she was beside herself with joy. Tomorrow? Ok, tomorrow. She never told me until my offer, that aside from the girl who vowed never to get her ears pierced, she was the only girl in her class without the ability to accessorize her lobes. Hm. What do I know? She's my first. We had to wait until we were 16 when I was a kid (though being the youngest of 7 girls, I do believe I shaved a few years off of that and found myself in the chair at about age 12).

Her enthusiastic response put a trip to the mall on the schedule for after school today. In the middle of a storm. Which she never noticed.

When we arrived, I was certain all bets would be called off. Right in the entrance by the piercing chair, there was a girl just a year or two younger than Cate crying as her mother tried to coax her with words and a few physical yanks, to sit and go through with it. I watched Cate, expecting her to change her mind. I'm sure she ran through her options, but then I had an idea. After getting Cate's permission, I told the store manager to offer to the girl's mother that Cate go first so the young girl can see how it goes before opting in or out. The manager skipped talking to the mom and went right to the girl with the deal. The mom skipped any answer from the daughter and told Cate that yes, that might work. So Cate went first.

Here is the last shot of her kiddie-clear earlobes, with an anticipatory grin between them -



I did not get the photos of them being done because it took only seconds and because I wanted to be ready in case there was a squeal or any other drama. There wasn't even the slightest flinch.

All done -


The younger girl continued her resistance for a minute, but by the time Cate had picked out additional earrings to buy (to put in a drawer for 6 weeks), the girl was in the chair, on her mother's lap. Two seconds and a few tears later we were all cheering for the girl. She'd done it.

After the relief of having it over with wore off for Cate, I could see her face being taken over by the thrill of entering the realm of big girls with this rite -


We needed to do something for Addie since she had to sit in her push chair for all this, so we went to the tiny play area in the mall for her to run around. I was commending Cate for her bravery, amazed that she had not so much as grimaced. I had to ask, wondering how much things had changed since I had mine pierced so many years ago, "didn't it hurt even for a second? Your face never changed - smiling the whole time!" I marveled.

She said that yeah, it hurt for a second actually, but "I didn't want to break my smile for the girl because I hoped she would still want to get hers done." That comment invoked the first tears of the event for us - mine. I get to live with the kindest person I know. That earned her a trip to nab some ice cream while we waited for the storm to subside a bit.

Addie liked that part of the ceremonial piercing best of all -




On the way home my eyes floated a bit again. I checked her in the rear-view mirror a few times as we drove slowly through the dark drenched streets. Every time I glanced, she had that "the world is my oyster" grin with the matching knowing squint to her eyes. You remember that look from when you were a kid? When you felt kinda bad for anyone that wasn't you that day? I live to see that look on my daughters' faces.

Despite the thunder and lightening, the wind, the wicked angle of a driving rain, the tornado warnings in surrounding areas... it was in fact, a day I think Cate and I will always remember as exceptionally bright and glittery.

Thursday, June 4, 2009

Loud and Clear as Ad: Thanks

It was not that long ago when wondering how I'd get to know my daughter kept me up at night. For us, the diagnosis of Rubinstein-Taybi Syndrome included cognitive differences not to be measured and lack of functional verbal communication, among other things. Bad combo, I have to say. Thoughts too half-baked and complicated to lay out here, I suspect that at least in Addie's case, these 2 things (intellectual differences and being functionally non-verbal) exacerbate each other to some degree. I agonized about the future, about how I'd know when she was hungry, tired, hurt, all the basic stuff a mom is to take care of. For a long time, I didn't dare think beyond those fundamentals.

Because I agonized out loud, in communities of parents with differing parenting needs, I got hints and links and "worked for me's" and tips... I got to draft in the wake of brilliant, resourceful parents before me.

Fast forward to now, I sleep pretty soundly. Addison has multiple ways to make herself understood and uses them in different hierarchies depending on with whom she is trying to get her point across. The fundamentals are mostly taken care of, though sometimes still require detective work.

Addie's home sick today - one of those ugly low coughs that tell you it's time for a break and some extra sleep. And the girl has got to go to school tomorrow - I finally have a date with my dear friend and a couple of kayaks! So the plan for today is to lay quite low, low enough to snore at times.

After driving Cate and her friend to school, we came home. Addie signed school and I had to tell her again she's not going today, because she's sick. She signed "sick" in response, indicating her agreement. Then she took her DynaVox V communication device and told me "I want to watch a DVD." When I asked which one, instead of selecting it from her page, she tossed my hand at the latch on the entertainment center, clarifying that she'd like to browse. After opening the cabinet, I left the room to make my coffee and log on, expecting to see upon my return a random pile from which she should choose...or from which I would choose.

But this is what I found:



Every one of her Signing Times DVDs lined up, being considered. I asked, Oh, you want to watch Signing Times, which one? Her response was to go bring her device closer and hit "I want to watch a DVD" about 6 times in a row. No need to figure that one out, she intended to watch them all today - all 28 of them, if she wasn't going to school.



From there, we put them in order according to volume number within each of the 2 series, practice time DVDs at one end. It was hard for her to see those tiny numbers, but she stuck with it and signed the numbers as we went. Then we counted Rachel's on the cover and flipped them over to check out each Alex and Leah pose on the back. Ultimately, she decided to start at the beginning with series 1, volume 1.

You can see how proud and delighted she was to get the marathon she had in mind underway (so much so, that the beloved toy snake of late rests coiled and untouched behind her), to be completely in control of its order and pace.



She signs, babbles and giggles as she watches (and today - coughs). She added a new form of interaction with it that I had not seen before. She yanked her device over and began to look for a few words as they appeared on the DVD. I caught this pic of her Grandma Lo Lo on the device while Rachel demonstrated the sign for grandmother. The interesting part: Addie had hit the button just before the sign was introduced, that's how well she knows each DVD.



As this unfolded, my pride in my brilliant girl underpinned all other thoughts. Looming large among those other thoughts is an ever-present gratitude to all the parents who have shared their experiences, research, expertise, ideas, and resources with me to Addie's benefit. There are so many such parents, but in the realm of communication, there are a few I have to call out specifically: Lisa P (DynaVox and SGDs), Pam H (all things AAC, implementation success), Lisa O (ASL and Signing Times), Debra D (light tech) and Elsa B (expectations of others and about a frillion other things). I appreciate you and your sons and daughters that inspire you - I see your families in these photos posted here of my daughter making the most of what you have taught us. Thank you for the peace, confidence and fun you have helped restore to our family. And for the sleep at night...

Wednesday, June 3, 2009

Getting More Out of a Damn Good Treat

This snickerdoodle cookie is pretty good...


But the delicate cinnamon sugar coating just lends itself to being enjoyed with an airborne backside and an upside-down set of chompers...


Thanks, Amy and Emily - delicious!