Thursday, February 7, 2013

Making that phone call

Okay-doodle. I've been collecting all your nudges and pokes and 'Spill the beans already, Stacey!' hints. There's so much going on, and instead of blogging about it I've thrown myself into my work and dumped my thoughts and feelings in a box. Sealed with duct tape. In a dark cupboard.

Did I eventually make The Phone Call? The one to the respite care centre in Magaliesburg for Travis? Yes, yes I did. But first I tapped the numbers into the phone, and... burst into tears. Sniveling, I handed the phone to The Husband and said: 'Please can you do it?' Yup, I crumpled like a cheap paper plate.

He pressed the Call button and spoke to the lady who runs the place. It was an awkward conversation. Your first instinct is to launch into a long speech justifying why you're not coping with raising your disabled child. Tip #1: they've heard it all before, drop the guilt. Tip #2: you'll never drop the guilt.

The next call (which I made) was to set up a 'meet and greet' appointment with the sister in charge. We were asked to bring Travis the Lionheart. Cool. Okay. Um. What does one wear to this type of appointment?

I'm going to fast forward here.

I didn't feel the tingle. That feeling, like lightning bugs in your tummy, that tells you that The Big Guy Upstairs has His divine finger in the pie. The people at the respite care centre are cheerful and kind. But it felt wrong.

The property is in disrepair. You need a 4X4 to drive up the dirt road leading to it. There is no daily schedule or activities of any kind: no coloring in, no baking cookies or making playdough - nothing like that. Just physical care. So feeding, changing nappies... Which means the Lionheart would spend 24 hours bum-sliding around the respite care centre's common room waiting for us to collect him. It costs R275 a night.

I don't know what I was expecting. A holiday club for disabled kids?
One thing I did approve of - they're quietly against sedating the residents to get them to sleep at night. In my research, drug policy quickly emerged as a big factor in the search for the right kind of care for our disabled child.

Some other things:
Travis is considerably younger than most in respite care. Does this mean his dad and I are giant pansies for turning to this option so early in the game?
Most people in respite care require 24/7 physical care - they are bed-ridden and fed through stomach tubes. Once again, are we giant babies that we're struggling with our Lionheart?

I just don't know, readers. The Husband, who neatly balances my heart-thinking with his head-thinking, says let's give it a go. Just one night. 24 hours.

I've had two glowing reviews from people who know families whose disabled children live at the respite care centre permanently. The sister-in-charge also phoned me this week to ask if we are comfortable after our visit, and to let me know which weekends she's on duty so that she can make sure she's there at the same time as Travis. That was sweet. Or was it desperate? Do they need the money? Am I over-thinking every tiny detail?

In the meantime, we've been forced to remove our Lionheart out of his beloved special needs nursery school of three years because we can't afford the R4200-a-month fees. It's temporary, I hope. I scoffed (more out of guilt than anything else) when someone suggested I start organising fundraisers to help with the expense of raising Travis, but maybe it's time to stomp on my pride and do something.

Okay, so that's my round-up on our trip to the respite care centre in Magaliesburg. I think a few brighter posts are in order now: this is all very heavy-going stuff. And *sings*: "He ain't heavy, he's my Travis-bear."

9 comments:

  1. wow Stac - You really are SUPER WOMAN...

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  2. Don't condemn yourselves with considerations of pansiness - giant or otherwise. You have no way of knowing how long the older people there have been in their respective conditions.

    A comment from my wife when I told her about Septo Optic Dysplasa - "Bloody hell. There is more than one lionheart in that family." I agree.

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  3. Stacey, why don't you get a weekend nanny to help you? We have a weekend nanny for Gabriel, it gives us the respite we need from his daily care and we can have some as a "normal" family. He is at home in his familiar surroundings surrounding by his loving family BUT we have the freedom on weekends to have a break from the arduous care-giving, screaming and strict routines.

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  4. Oh Stacey, today in the car, I was at whits end with L - an ordinary slightly on the autism spectrum, nothing like what you are facing every day but honestly, I so totally understand. Wish I could help

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  5. I vote for fundraisers. Come on...do it! :)

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  6. Cannot be an easy call... think your husband may have the best idea... to try it for a night and see.

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  7. My instinctive reaction to this post is, "Go with your gut." But I have no reality on raising a disabled child or what you go through every day.
    Love & strength to all of you!

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  8. I can't imagine how tough this decision is for you all. Kind of like leaving Ava for the first time with the nanny x 1 000 000 000! I cannot imagine how scary it must be to trust his care to strangers.

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  9. I have done the same as Ally Cohen. Over the past six years we have employed a really wonderful girl to au pair Nick. Just a few hours during the weekend makes a HUGE difference. We no longer need the respite, however, she still does 10 hours a month for us. Good luck with whatever you decide. Di xx

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Rooooaarwl! Thanks for sharing, Lionheart fans.