Friday, January 22, 2016

Good Grief. Dealing with death and special needs.

We've recently had a loss. Our good friend and neighbor, Becky, passed away last Friday. I've been asked more than once how I explained death and dying to The Chick Magnet. They were concerned that he wouldn't handle it because of his intellectual delays, etc..

The answer is fairly cut and dried.

I don't have to.

He's lived enough loss in his young life, he could write a book on it. He was born into the time of the death of his great-grandmother. Once he was old enough to be conscious of loss, it was his Bumpa, his Daddy, then two young friends and another "Mom" friend who left behind a 4-yr-old. That was his first experience in learning that Mommies die too, since all he had known was loss of male figures in his life until then. That left us vulnerable for a long time.

His Grandma V. was a hard one, since we lived so far away, but we had a good visit with her in the months preceding, and that eased it a bit. His auntie called from her bedside to give him the chance to tell her goodbye. <3

Now this.

Becky was a fixture for us, she was his buddy, his cheerleader and one of his biggest fans. She was my touchstone, my partner in fighting the anxiety we both dealt with in different ways. She became a kind of surrogate Grandma for Steven, especially after his own remaining grandmother flaked out on us.

She jousted her dragons of depression and anxiety, stressors coming from both within and the outside world. I would get a call or a text saying "Can I come over?" and we would sit and wait it out together until her husband came home. Sometimes, the quiet of being alone created voices that scared her. Sometimes, her own mind turned on her for no good reason. Dementia was a very real monster.

At times it was my turn, She would babysit me when the first twinges of a panic attack would threaten. She understood them all too well, and knew that just being there helped. Just being. I would try to joke and bluff my way out of it, but she knew. She always called me the brave one, but she was about to dethrone me for that title.

When the call came after an appointment, the call that she had decided to enter hospice, my ground shook. My first instinct was to try to talk her out of it. I knew she had a chronic, degenerative illness when I first got to know her, but it wasn't real, nope. Not going to happen.

Steven and I are a lot alike. We deal with our anxieties and fears by wanting to fix things. Surely, we could fix this?  After her original prognosis of two days began to stretch out, we kept up our vigil of "just being". Her dementia eased it's chokehold enough for her buddy the Chick Magnet to be able to come for a visit and give his stamp of approval on the ladies who took care of her. We were allowed to hope she would get a reprieve, and we could keep her.

Her body had other ideas.

On his last visit, she was having a bad day. She loved him enough to ask that he not come in. She didn't want his last memory of her to be of her fighting to breathe and being afraid.

He was content to send in a hug and to get another smile by having me relay the message he as busy out in the hallway chasing the ladies.

We went home to face reality together. During hard times, His Majesty and I can be like oil and water, but the hidden gift is that caring for him gives me strength I don't know if I could tap into otherwise. Tears don't come easy for him. When they come out as anger, it scares us both, but we find our way through.

I would go to sit with Becky as often as I could. Steven would text for updates during his day and quiz me when he got home. I'll admit his coping mechanism of hyper-vigilance doesn't go well with the loss of my anchor, but we have a wonderful psychologist to guide us. It's hard, but we'll make it.

I'm thankful for my daughter, who also has the gift of "just being". Knowing she's nearby keeps us both from flying off, and the dynamic duo text each other nonsense and inside jokes that remind him someone will always have his back.

All special-needs families deal with that fear. We need to create a network of support, so when we're gone, there will be enough people "just being" to carry on in our place.

I plan to carry on. My writing is rusty, but Becky made me promise to get a book done one day. I have no choice but to try. Both she and my late mother-in-law have made me swear to never give up art like they did, so I'd better get on that too.

Thanks for reading my rambles.

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