Sleep is Overrated

I explained the lull one way in November. I explain it another way now. My PC is croaking a very drawn out death of natural causes - age combined with obesity. I cannot make myself delete photos or videos with my sweet girls in them. OK, even my attempts at being arty remain - the flower petals, grains of sand, tomatoes from our garden. All there, bloating my hard drive, compromising "circulation."

So an external hard drive and a more agile laptop are on their way, which I hope will mean a return to frequency here.

In the meantime, sleep is again/still elusive here. Winter break shook things up and just when they started to settle, it was time for alarms and morning routines again. As absolutely beside herself Addie was to get back to her beloved school, she's sleeping less than when the semester ended.

Addie continues to wake up frequently during the night and very vigorously rock in her bed. Cate is the only one that sleeps through it and lately even she has been disturbed.

To add to that, these last few days when we thought she'd be exhausted after restarting school, therapy and swim, she has utterly forsaken her nap. Rocks, plays, jabbers in her bed - anything but sleep. I know, I know. With a typical kid, you'd say she'd outgrown her nap. But since there is precious little sleep at night, this is not the case for her. After a napless Monday afternoon, she fell asleep 20 minutes before we needed to head to adaptive swim class. And today, after getting all her outer gear on as she was waiting for the go ahead to line up, she zonked at school for the first time. Just passed out on her proprietary purple carpet square.

She stayed asleep in her aide's arms while I ran her backpack and communication device to the car and moved the car closer to prepare for the carrying of nearly 40lbs of snoring dead weight over snow covered ice. She continued to saw logs of notable diameter until I put her in her car seat. With how big/long she has become, along with the layer of ice that has covered our suburb for a week, I have to sort of toss her into her seat to ensure her legs are not tangled with mine and that I don't take too much weight into my back and topple. That woke her up. She was absolutely thrilled to be in her K4 room one minute and in her own spot in the car the next, seemingly.

We followed our after school routine: she played in the backyard for a bit (read: ate all the snow she possibly could) while I made her lunch. She came in, ate and then watched Jack's Big Music Show to wind down before a sleep.

Through lunch, I debated whether to just skip nap, but my fear is the involuntary pass out around dinner time and how that might have a ripple affect at night. The girl needs sleep to function and she's just not getting it. So I decided to give it a whirl. If nothing else, I could get a few things done.

Addie now sleeps in a toddler bed with a removable rail on one side, the wall on the other. She has taken the liberty of removing the rail herself a few times (found her downstairs at 3am one night), but we have since rigged different ways of preventing that. Still, she'll sit crosswise on her bed, specific blanket wrapped over head and shoulders, and rock with her back against the rail. Upon impact the rail gives a bit with a thud and then audibly snaps back once she's on the forward part of the rock. There is no mistaking the sound or her particular rapid fire.

Often I go up, remove the blanket, lay her back down and cover her up; "reset" her, if you will. This usually makes no difference at all, as leaving her to continue rarely leads to saturation with it - she could go for hours. We have tried the gamut of strategies, but the girl has a will of her own. If she wants to do it, she will indeed do it, our interruptions never affecting her patience or concentration.

After laying her down and singing/signing our song this afternoon, I busied myself with details that are tricky to focus on when she is near. My plan was to give her (really give ME) 45 minutes up there and hope she'd fall asleep within enough time to nab some productive z's before I have to wake her to go get her sister from school. Within 6 minutes of kissing her cheek and coming downstairs, it started.

This sound of her rocking is a very familiar, very frustrating sound to us all. It initiates irritation and worry at once. It tells us that she is not sleeping and neither will we (at night). It drives us to forecast the 24 hour implications: will Addie make it through the day, will she nap tomorrow, will she be able to participate at school, will this undercut her immune system and her awareness, what will it do to her already compromised motor planning, sensory processing and balance...then, will I get enough sleep, will my nerves be shot to the point of childlike crankiness?

In short, it is not a happy sound.

Today, I heard it a different way.

THUMP-thump. THUMP-thump. THUMP-thump. THUMP-thump.

The second I tuned in, I did not sigh with exasperation as is my reflex. Instead, I was abruptly sent back to 2 separate moments in time, one before Addie was born and one after. Different days that centered around the same rhythm I was hearing from upstairs. Daydreams, hope and promise culminated in the moments anticipating this cadence back then. Despair and cold, bitter loss followed the silence that filled the gap in place of the pattern of sound I expected. These slippery pits of silence took place in my ob-gyn's office. I remember looking up to the doctor's honed and professional look of sympathy as the fruitless stethoscope dangled, an expression that also asked a question: is that enough for you, or do I need to put official words to what you probably already know. This baby did not make it. There is nothing for you to hear.

Holding a wet, soapy dish in my hand today as I listened, I let this brief brush with heartache move out of the way quickly. Those recalled life or death moments were just utilitarian this time, not to be dwelt upon. They had to be called up to lend context to the message I was meant to get. For a girl that cannot speak, Addie is incessantly talking to me. Her wordless message this time:

I am here, mom. I did make it. You hear me? Hear this heart beat? Bear witness to me, mom, to my vibrancy, to my verve. I am with you.

I am.

Nap is cancelled until further notice. In that time slot shall be dance parties, finger painting, snow feasts, sing/sign alongs, lounging, living. Listening to our hearts beat.

Lull

The lull in posts indicates the complete lack of lull in life. It's been nonstop the last month or so. I cannot pull a cohesive theme from these silent weeks to give an accurate account. It's just been rather random.

I think random and busy must be my happy place, though. I am grateful for that.

So I'll go with random.

Cate was in her third community theater production. She has been in the Wizard of Oz, Jesus Christ Superstar and Big, the musical. The rehearsals and peripherals of being on a community stage have reeked havoc on schedules, sleep and emotional steadiness, but she would not have it any other way. The next few shows have no children's parts and though I am looking forward to the break, I know there will be a huge gap for my little performer. We are still seeking out temporary outlets for her verve until she can get back up there again next year for Annie...

The marathon is complete for our hero Michael, but that doesn't mean his feet are up. He still running, orchestrating the most amazing dinners for us, working, playing guitar for his little groupie Addie, indulging Cate's detailed briefs of every moment of her life and picking up my considerable slack. All while demonstrating to the 3 very manic women that he lives with, that wild and opposing winds all need a common, quiet steady force at their initiation to maintain strength.

For me, I mostly keep busy as one woman pit crew for the ones I adore - 80% observation, anticipation, preparation, 20% frantic action. There are the distractions from this: advocating for ones I'm not related to, writing, consulting a bit, being a friend, sister, etc. Then we have holidays which seem to be mothers' work (yes - comment on this - the comment must evoke something from you) upon us. I did not cook for Thanksgiving, though. As a vegetarian of 25+ years - I was quite young at the start, yes, thank you - nobody wants me responsible for bird-roasting.

While I love the early winter holidays (late winter holidays being Valentine's, St. Patty's, my anniversary and birthday), each year they seem more and more daunting. Some of it may have to do with the lack of simplicity when you go more than 3 deep with those in the "helping" professions on the gift list. Cate has a school teacher and a Sunday school teacher. Easy. Addie has teacher, assistant teacher, spec ed teacher, 3 aides, PT, OT, SLP, adaptive swim teachers, respite volunteer... so many that make such a huge difference in her life. I'd like to space out Christmas so I can really do justice to each. You think I could initiate something where Christmas is broken up into 4 or 6 smaller chunks and spread out evenly over the year? But I know it's partly my fault. I have this hang up that the gift must be simple, but meaningful, be indicative of how Addie is impacted by their presence in her life. If I could just go get a dozen gift certificates for the coffee shop and call it a day, it would be much easier. I admit my problem with poignant gift-giving. I am envious of anyone who can purchase an apple shaped ornament or stuff a mug full of Hershey's Kisses and be free.

And then there is our Addie. She's tall enough to choose her own silverware from the drawer now. Never thought I'd see that day. She's been so absolutely squirmy with happiness lately. She loved Thanksgiving at my sister's house - all her favorites: people who adore her, a cat, lots of room to move around, and plenty of mirrors at her height. We also finally got a lot of extended family members in her communication device. She is addicted to her photo pages. We got their names, pictures and a few comments about each in there. Even the family pets. I'm afraid it's going to be a bit of a distraction when she gets back to school on Monday! But at least she'll get to tell everyone there about how Aunt Kathy likes to buy lots of pricey shoes.

Addie has a way, after she's done something she finds exhilarating or peaceful or fun, of swinging around to those she thinks are responsible, even hours later, to say thank you in her own way. She will just make this running dive for you, if you are lucky enough to deserve the credit, and squint her beautiful eyes so tight there's almost nothing left but two tiny crescent moons, you'll see her top teeth, which she almost never shows, and she'll grab you and hold on as though she'll fall off a cliff otherwise. She'll hold as long as she wants, sort of shaking throughout, laughing, snickering or humming. Suddenly she lets go and moves on without a look back as though it never happened. You are left with this pristine imprint that you have not so much heard as you have felt. The message is: Thank you. I LOVED it. Once you get one of these you are instantly hooked - greedy for more.

Of late, she's been doing it quite a bit.

So I hope you'll understand and forgive the present lack in posts.

Listen

Addie says "Listen to me." Addie's mom says listen to these kids, take 3 minutes and 25 seconds to watch it a first time to get over anything that might need getting over, if applicable. For me, this was getting past the emotion of seeing so much living proof in 3 minutes of our conviction that as a teenager, an adult, Addie will continue to be the confident, powerful, joyful, contributing member of many communities that she is now. For my 9 year old, she needed to ask me a question after the first viewing. Because the majority of the young adult AAC users in the video use wheelchairs did that mean that Addie would too by that age. No, hon, everybody's different, even when we tend to group by similarities. Once you process your own stuff on first viewing, watch again and listen.

Since I first saw this a few hours ago I have watched it 9 or 10 times. I hear something new every time.

AAC users have something to tell you. Addie has something to tell you.

Listen.

And Grandma's Mantel Shall Be Graced

I know, I owe a regaling of Marathon Day. You'll find it here soon.

In the meantime, an update of another tale: the school picture saga. I type again, as I did one year ago, with cheeks stiff from tears. And I should not be typing at all because it's nearly 70 degrees out, royal blue sky, brilliant warm sunshine... But it's sort of feels like that inside, too.

Without further ado, here it is (ado will follow, not to worry):




No need for a flotation device this year. Someone might like to tie a rope around my ankle however, and give me a yank or two back down to the planet. Or, could you give me a minute to linger?

I have a habit of commenting that certain pictures are worth a thousand words... and then I go and lay down a thousand more. But if you're reading this, it's likely you're fully aware of that and have your feet up, your coffee cup steaming and full.

This is Addie's smile for me, for her dad, for Cate, for Mrs. Bautista, for Trisha and a few others. Or so I thought. It is the one she hauls out when she feels confident, comfortable, believed in, loved. Truly, it's not for everyone.

I already knew that her aides and her classroom teacher sort of collaborated on picture day. They'd mentioned there was a step stool the kids were to sit on that she wasn't having any of. They sort of shrugged when they told me, as if to say "who knows what kind of picture we'll end up with." There was also hopeful mention of picture retake day. Expectations were not high. I don't think I really had any, in fact.

But on picture day, apparently her team did Addie the great respect of trying, reworking and trying something else. This smile is the smile that someone gets when they aren't deterred by her willful opposition to things. It's the smile one gets when one gives Addie a say and then responds with unwavering faith in her. The smile says "I'm right where I belong and so are you."

So Grandma, clear off the knick knacks and get dusting. There's a hinged double 5x7 frame coming your way, stocked with 2 gorgeous girls. When you look at this frame on your mantel, you'll smell graphite and tempera paints, you'll hear lockers opening and closing, you'll feel the click of a ring binder. And the photos will speak to you in unison - one in a rapid high voice, the other in a synthesized computer-generated voice, "We are contributing members of our own communities called school. Just like you were."