Monday, August 24, 2009

The new campaign

The "children" return to school. I still worry about notes because they seem passive aggressive. Do I wake her to tell her I’m going out or do I risk her waking and finding herself alone and confused. Although my daughter is home, she doesn’t live in the kitchen as I do.

First off I would say that I’m not quite sure what I shall be doing but be sure that I will be doing something.

Nonna has always had two alternate versions:-
“What do you mean, I always sleep perfectly!” or
“No, I always sleep badly.”
It’s familiar territory, or at least it was.

Now it is different.

Recently we have experienced a new variation on a theme. She remains in bed for the majority of the day, dozing and reading, and dozing and reading. This seems an entirely sensible option when the weather is hot, the European Siesta option. However, lately the weather has not been true to form. Warm? Yes. Sweltering? No. I cannot be certain until I notice something else.

I knock, wait and enter with a cup of coffee. Not an early wake up call but a 9 o’clock call to action which I hope is a reasonable compromise for someone of advancing years. On my previous similar entries I had noticed that the rubber sheet had been discarded, unfortunate but perfectly reasonable. If it had been me who had be presented with a rubber sheet by my daughter in law I doubt if I would have been so tactful with the implied insult.

Since it is warm it’s also sensible just to use the duvet cover, alone and empty as a semi blanket and reject the puffy duvet’s heat. What is less understandable is the use of the fitted sheet as a top sheet where your body lies next to the bare mattress. When I see her smile back at me in greeting whilst clutching the elastic of the sheet I am at a loss to know what to say. Instead we run through our first meet and greet session before I leave on automatic pilot.

Back in the kitchen I am left with a sinking feeling, a very familiar sinking feeling. I stop worrying about why the tumble drier smells of burnt plastic. I talk to my daughter about it, another adult. She in turn tells me that she noticed the disarray on a previous occasion, meant to mention it to me. She didn’t mention it because at the time I was dealing with other matters, children’s matters, in the thick of it. She didn’t want to tip the balance, so she held it, held if for later, for now, for this moment now that the children are not here. A different moment, a different matter.

It is a matter of opposites, stark. It’s the emotion a parent experiences when their child first smiles, when it isn’t a burp or takes their first step, when it isn’t a stumble. The gasp of breathtaking delight is an anxious one, celebrating the first, anxious for the repeat. The parent of a child with special needs, who may have waited a lot longer, also knows they may have to wait much longer for a repeat, that the repeat may not come, so they hold back their expectations and practice patience, because given time and encouragement, it may just be that whatever this next skill might be, it might just, if they’re very lucky, become part of their general repertoire. It is precisely because we have these common experiences that this should be easy, plain sailing. Except. Except here, it is the exact opposite. Debatably a first step, one that I do not want repeated, or it if is repeated, to be repeated a very long time from now, and please delay inclusion in the general repertoire. The difference is the element of hope. It is hope that sustains us, the brighter future, possibly, always the possibilities, although now even that begins to wither. And that is exactly how it feels, in reverse, just so you know, and I know that you surely know.

So where does that leave us then? Whilst I’m not entirely certain, I do know that it somewhere between there and here. If we can get her up, fed, showered and dressed in a timely manner, then we’re probably not doing too badly.


Jazz said...

My heart goes out to you.

Stacie said...

I don't know what to say except that my heart goes out to you. It's not easy to take care of somebody else.

starblinkee said...

Like them, my heart truly goes out to you. I commend you for being as patient and understanding as you have been. My professor, who became my friend had to deal with a similar situation I think(Both her adult daughters are special children). And every time we talk she is all smiles. Through it, I can tell that she is clinging to the only thing that has kept her going for so many years: her love for her children.

Tanya @ TeenAutism said...

A good campaign, indeed. Thinking of you.

Kelley @ magnetoboldtoo said...

babe, you are amazing.

I know you do what you do out of love, but you are still amazing.

tut-tut said...

You've got a lot stuffed in that sandwich . . .

Bonnie said...

My heart and thoughts go out to you because your description totally fits that of a friends who shared her thoughts on her mom and unfortunately, her declining condition. She told me, "With Casey, there's always hope, but with us, she's just going backward." I am so sorry for you and your family and know you have the strength to take care of whatever comes your way!

tiff(threeringcircus) said...

You are doing an amazing job, you know?
Such a hard one at that.
Thinking of you.

Osh said...

Oh...Oh Nonna. I feel like she is my own Nonna. I wish I could offer better words.


Anonymous said...

Not too badly at all.