Today

Today I sit and wait.......yesterday, I didn't have that opportunity.....she was frantically crying at our bedroom door while Don was dressing for work....the day before she came upstairs looking for me just after he left for work....today.....Don left about fifteen minutes ago....and I'm waiting.

Yesterday,as Don left for work...I sat her down in front of the television....thankfully Olympic programming is on...instead of listening to the inane pre teen programming that we are forced to listen to with three developmentally delayed adults in the house, we listen to sports.....hockey....ya, I know...my older kids would have a laugh about that...I.normally hate hockey...I never let my boys watch it while they were growing up....ya, I know ..in Canada that's got to be against the parenting rules ....but I hate the stupid , immature fighting that the crowds seem to perpetuate with their hollering.....I'm sure most of it has to win the hockey players the drama award......I never felt it was a good role model for my boys...this immature fighting at the drop of a stick....then all of a sudden my boys would be copying them and I would turn the hockey off.....but now, it's Olympics ....fighting is not allowed....I still don't understand the extreme pushing and shoving into the boards...seems kind of violent instead of just using athletic skill to be the champion....anyways...I digress....the hockey is playing...two countries that I rarely if ever think about, but it keeps her occupied.....occupied, while I make her breakfast, assemble all her supplements,....pills and capsules that we hope keeps her healthy while her mind is locked away.....somewhere......

Her breakfast is ready and I break another rule...I let her eat in the living room, in front of the television...it seems to preoccupy her and she eats without being prodded as we have had to do the last few days.....it gives me a few extra moments that I don't have to repeat myself three times before she completes the simplest of tasks......
'Put the lid down, Maya...no, Maya , turn and face the toilet, and put the lid down, ..Maya! Put your hand on the toilet seat lid, now ...put it down....that's it...now flush the toilet....no, put your hand on the handle and push it down....down, Maya, down....that's it.....now come over here and wash your hands.....get them wet....and now put the soap on....rub it in good...yes....now rinse the soap off...rinse the backs of your hands.....rinse...there's some soap there....okay....now dry your hands....no, that's your face...dry your hands...no, Maya...your hands ...not your face, your face isn't wet....oh, never mind...just come out of the bathroom.....'
Back to the living room we go, I gently push her down onto the chesterfield....in front of the sports that she loves so much....she sits....she cries, she laughs.....she keeps saying, I'm sorry,...over and over and over...or thank you, thank you.....

Yesterday, while we were watching the television.....we do a lot of that.....it keeps her occupied.....there's nothing else that she can do.....and I sit with her....when I get up to go somewhere....the kitchen, the bathroom, she calls my name in a panic.....nothing is accomplished these days....the house needs cleaning, meals are quick or get your own.....but yesterday, during her tears, she asked if she could pray....I said , sure.....she moved off the chesterfield to her knees and bowed her head, then her back...and she just sobbed...and I cried with her....and it reminded me of the bible verse that says something about not needing words that our God understands the groaning and cries of our heart......we don't have to utter a word...which was good because Maya isn't big on words and sentences these days....in fact she'll start a sentence...get two or three words into it and stop.....forgotten what she was going to say.....

Later, it was bath time......maya is usually willing to have her bath.....my friend gave me some nice smelling bath stuff for my birthday and I pour some into her bath water......when Maya was very little she had a favourite video...called'The Biggest Little Ticket Birthday Celebration'...she asked for it constantly.....in it there was a Happy Birthday song sung in kind of a jazzy way..she loved it! Yesterday, as she was getting into the water she started to sing the Happy Birthday song just the way they did in the video....I was very surprised...I hadn't heard it in at least fifteen years......to try to figure out just how her mind is working right now just boggles your mind...

Throughout the afternoon she watched Olympics, Don came home from work early...our youngest daughter had an appointment to get her needle..it would have been difficult to take Maya...I was grateful that he could come home. I left with Megan and Don sat down beside Maya, taking my place. I stopped on the way home to buy some more disposable underwear for May...she seems to have developed an incontinence problem this time....not fun...these make it a little easier.

I arrived back home an hour later, Don is still beside Maya, with his laptop in front of him, a text book beside him.....finishing up some prep for his evening class that he teaches at the local college. After sharing some tea together , he leaves again......not too late , he says.....around eight-thirty- nine.......bring milk I say, we are almost out.....

We went on with the evening, maya surprised me, asking to go on the treadmill...I said sure....she went down stairs...I didn't hear anything....I went to check and she was standing beside the treadmill, in the semi darkness, ....just standing......I turned it on for her and encouraged her to get on.....I started it up and told her I'd get her supper ready......while in the kitchen, I heard silence again...I went to check...she was standing on the quiet treadmill, looking confused....I started it up again.....

After supper, with her napkin from supper folded up in her hand, she asked to go on her computer....sure, I said...it's in dad's office...go and get it......she was gone for a bit...I went to check....she was coming down the hall , carrying my glass case from my bedroom......I decided that she wasn't ready for the computer yet ....so we sat back down in front of the tv.....

Don came home from class, he forgot to bring milk....he was tired too....we are all tired......he went back out to get the milk.....

When he returned, we started the bedtime preparations .....I found some pyjamas for her and got her changed.....helping Maya do these simple acts is exhausting and my arms and hands are aching, hurting. It's like working with a two hundred pound one year old. We gathered up her pills.....she takes a Benedryl to help her sleep, a Melatonin also, she takes her depression capsule...a little yellow one and , the night before and tonight we will give her an anti psychotic pill......I don't like giving her those.....they only have a positive effect for about five days and then the cause her to have very bad hallucinations....it's a very powerful medication but we are desperate....desperate to have our girl back, desperate to have our lives back.....just desperate.

The last two nights she has become very obstinate in taking her pills for some reason.....she takes all her morning stuff without a problem but fir the last two nights, she holds the pills in her mouth and refuses to swallow them...she will drink a whole cup of water and they will still be in her mouth. I tried feeding her yogurt , thinking that would help...it did minimally, and resigned to just letting the last pill just sit and melt in her mouth. Don made her Sleepy Time tea, and when she was done, he took her down to bed.

I went to get ready for bed, opened my glass case to put my glasses away, and there was Maya's folded up dinner napkin......

When he came back upstairs , we crawled into bed, two exhausted parents...in mind, body and soul.....Don barely said a prayer before we were sound asleep. Another day is done.....

........and now another day has started, Ben came to my door as I was writing this, maya was in the bathroom, she was calling for me.....I got up and went to her......so far the day is the same, she's had her breakfast, were sitting watching Canada trying to get a Gold medal in the curling.....

......another day......


~ Marie