Today I thought about Greyson's and Parker's future and I got the chills-- and I'm still not fully certain as to why. That's never happened to me before. So often I think of it with sickness in the pit of my stomach...I have to talk myself off the ledge...God loves those babies more than you- I remind myself. He will take care of them. Today, at least for a little while, I found hope for their future and it was free of expectations.
It didn't look like- they will be rich- they will be successful- they will be smart- they will be xyz- predetermined thing. I don't know exactly what it was...it was like the Holy Spirit just filled me with this peace... Peace that whatever it is- Oh man, it's gonna be good... Maybe it was the taste of spring in the air...Maybe it was the 60 degree weather & baby blue skies. Maybe it was the endorphins of exercise from my jog... Maybe it was just the fact that I could envision them happy... Truly see them happy...
So today armed with a pocket of hope , I was happy too.
Happy like this newspaper made Greyson...all of the sudden I looked up and I was in shock as I noticed he was reading the paper....What?!
And I laughed as I saw what caught his fancy... Yo Gabba Gabba is coming to town... I think they need to meet Greyson...
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In Pharmaceutical Sales my boss would tell us- Hope is not a strategy. You can't hope to make your quota each month...You need a game plan, a broad knowledge of your drug and disease state, a passion for what you do and what you sell- and an appetite for stats and sales strategies that can change in an instant. Hope is NOT a strategy in deadline driven industries, pharmaceutical sales or engineering...
But when it comes to Cancer or Autism or Love or many of the other things we sometimes struggle with... sometimes Hope is the greatest strategy of all. There is no one size fits all in Autism. There are a complexity of differences. You have to trial and error your ass off. And you have to be willing to error 99 times for every 1 victory.
When that one victory comes along- you must rejoice and do a lap. And even more importantly- you can't focus on the 99 things that didn't work...Sometimes it feels so dark in your soul by the time you get to 99 you just want to give up...Boy the joy when you hit the one thing that works is amazing.
Like this chair...it was number 100... He loves it....loves being cocooned inside- loves swinging and loves spinning...at night he needs that kind of stimulation to help him relax --and this chair hammock helps do the trick.
The hardest part of Michael being gone is The Really factor. Some moments hours and days are easy...
But when it's hard- it's really hard.
When it's quiet- it's really quiet.
And when I'm burned out- I'm really burned out- like I was tonight. The bewitching hour is real. And it's bad. And when it's bad- it's really bad...It can start as early as 5pm- but usually waits until 5:30. And if you don't leave before 5:30, then you get tricked into thinking it would just be easier to stay at home. Then the witches and demons get you. They make you do crazy things like say curse words under your breath at Dora trying to teach your kids Spanish.
Bocina is horn in Spanish. Great! Can you say bocina? Say bocina. The bocina on the bus goes beep beep beep.
Dora- PLEASE JUST SHUT UP...THEY DON'T EVEN SPEAK ENGLISH...They aren't going to say bocina... Enough with the bocina already...
This evening Parker started screaming because Mack the truck's trailer fell off... melt down... and then Greyson just stared at him and laughed... and I could actually see witches flying overhead. I checked the clock... 5:47!??? How did it get to be 5:47 already?! I quickly threw both kids into the stroller and I ran like mad.
It's so crazy because once I leave the house, they usually become my sweet little babies again. Shew....
I ran to the park where we were around kids and people and it was good. I laughed because there was a talky talky kid there.
Can I push him on the swing? Are you his mom? Why are you sitting on the swing? Why does your flashlight blink? Why is he crying? Is that your stroller? I have a pink bike. Look at my bike. Look at me ride my bike. I have a helmet.
Suddenly it's obvious why her dad brought her here to the park...and had headphones on- I swear...I bet it is his bewitching hour too... I didn't blame him... In fact I looked over and gave him a nod- that said- Hey- It's OK...I'll listen to her for awhile..you rest your ears...
And although I would pick for Greyson to be 100 talky talkers all day long over being unable to speak, unable to communicate basic needs, frequently screaming out of frustration, having to go to speech therapy instead of the park... I will at least attempt to enjoy the silence of Autism tomorrow since it is my only option. Being happy with the gifts I've been given.
We stayed at the park good and late...
Just to be sure the witches were completely gone....
Swinging AND holding a flashlight...wow- was he a big fan...
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Friend, do you have one of these?
They greet us at the door every time we come home. It's the greatest...
You don't have one (or two?) Then how do you know you are so sweet and miss-able and perfect the way you are? That's how dogs treat you...and they teach you too...they live in the moment...they never hold grudges...they don't care about the way they look or material objects...and they help you live longer too...truth...
This little baby needs a home- and I think you should get her if you live close ..She's 15 weeks old, up to date on shots and spayed... She is some sort of wire hair terrier... Her Momma was 15 lbs- she probably won't get bigger than that. She is a foster with Central Valley Animal Lovers. Like me- she isn't perfect-- she is having hernia surgery in a week and can go to a good home soon after. The adoption fee to take care of all that stuff is $150- and that $150 also gives you an unlimited supply of love.
If interested email shaestew@hotmail.com
That's all for tonight... Oh yes- and like Life with Greyson + Parker on Facebook....
heck yea we have a witching hour. wine helps.
ReplyDeletesusan
where could I find a chair hammock? my son was diagnosed 3 months ago and I am still living that sadness you referred to in your most recent blog entry. it doesn't seem to be getting better... maybe your words will help.
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