Friday, October 11, 2013

fairy dust

Nobody promised us perfect.

Just a life. That's all that's guaranteed. Everything else is up to us. This blog shows a glamorous portrayal of autism. Not on purpose. It's how my eyes work and how my brain works. I think that Life is a gift- no matter what the package looks like. When I am in a funk, when Life is hard and it's on the front burner in my mind- I tell you about it. I don't hide it. Thank you for letting me be that with you. Real.

I was reading the book, Carly's Voice this week. At the age of two, Carly Fleischmann was diagnosed with severe autism. Doctors predicted that she would never intellectually develop beyond the abilities of a small child. Carly was nonverbal and remained largely unreachable for many years. Then, at the age of ten, she had a breakthrough.While working with her therapists, Carly reached over to their laptop and typed HELP TEETH HURT, much to everyone’s shock. Although Carly still struggles with all the symptoms of autism, she now has regular, witty, and profound conversations on her computer with her family and her many thousands of supporters online. Carly's Dad shared many painful and imperfect truths about their life in this book. The hard, the sad, the gruesome. And reading it was hard for me- because it makes my heart ache for them- and for us too. Because reading it out loud in my head, paints a picture almost too real. Sharp

But reading the book reminded me that I should tell you- my Super Power Parents- that our life isn't always easy and happy and amazing. I can understand how it may come across that way. Sometimes Life is hard. Sometimes so horrifically, painfully, terribly hard. I had a new Friend over a couple of weeks ago. While we were talking in our playroom, I looked over the ledge into our family room and saw Greyson down below. Naked. He had pooped on the floor and rubbed it in. And I realized, sometimes it's hard to let people into our real and weird little world. And it took some time, and a realization that I only want to be around people who are real and awesome and can handle it. But I didn't mind, because this is our Life. It's not for everyone. Sometimes all I can do is laugh- like this Poo-casso incident. Sometimes all I can do is cry, because it feels so hard and so scary and so wrong. Sometimes Greyson is making ticks and noises and flapping his hands and he will mistakenly hit me and I want to go out of my fricking mind, I'm so annoyed. I want him to stop screeching and making grunting noises so I can hear myself think. I want to yell at him for flapping so recklessly. Okay- typing that totally made me laugh. Reckless flapping. It sounds like a misdemeanor. There have been times I wake up in the middle of the night and I can't go back to sleep...because I'm scared my boys will be in an institution after I die. Because I'm scared I won't make the right choice about something I'm dealing with. Because I'm scared someone will touch them or hurt them and they won't be able to tell me. There's been times I've been worried that something won't be covered by insurance, times that things haven't been covered. It makes me sick. There have been times I wish all Super Powered families could win the lottery so we never have to worry about money or available therapies. We can't do anything like a typical family. Go on vacation. Go to church. Use a new babysitter. Enjoy a friend's birthday party. Sometimes a trip to the grocery store is exhausting. The screaming...sometimes it's all day long. Sometimes I just start screaming too.

Yes, yes, yes. All of that, yes. Me too, Friend. Me too. I understand.

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But this picture reminds me of our Life. There are many dark spots, but more importantly, there is speckled patterned sunlight woven throughout the trees. There is so much brightness and beauty and light in the middle, the heart- where it matters. Sometimes I can't believe I got this lucky.

No one's life is all just one single thing.

When you can't have something you want, you end up wanting it even more. Partly because it's hollowing absence makes you realize just how much you want it. Today I got a taste of something I usually can't have. And it was golden, liquid, tears in my eyes, sweet. It was so special there were times I wanted to turn it upside down and drink it.

No future, no past. I lived in today all day long. Today the sun breathed me to life. Greyson's Behavior Therapist was sick, and the day was ours. We took Parker's Therapist with us, and made it a community outing to the zoo. The potential of being a regular old Mom on a regular old Thursday left me giddy. 

And someone sprinkled fairy dust all over the entire zoo because everything was perfect and easy. No other words could describe the day except for magical. 

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The sweestest, calmest of animals. 

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Parker gabbed with this guy for at least 5 minutes. He held his face and looked into his eyes and told him all his secrets.

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Paca the Tiger was breathtaking and majestic. And his lipstick was out, which I felt compelled to tell the Zoo Guide for some reason. He said I'm the only person that's ever told him that. I can still hear him laughing. 

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Two faces of Parker. Look hard. Sea Lion Cove my favorite. Actually, everything there is my favorite. Especially the two little boys.

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Have a wonderful weekend. I'll send some extra Fairy dust your way. Wish me luck. Tomorrow I am having surgery on my shoulder. I think I finally found an amazing Doctor who is helping me find the cause of my headaches. Slight tear in my rotator cuff and bone spurs or something or other. Is it weird that I am excited to go under? Uninterrupted peaceful sleep sounds really amazing.



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  1. Glad you had a great day at the zoo! I love the zoo. Ours doesn't have elephants anymore though. Hope your surgery goes well & that you have a speedy recovery AND that it solves your headaches! My shoulder is all screwed up right now too. Think I need to go back to the doctor. Hoping I won't need surgery though. I think it's my body's way of telling me to slow down & take care of me... so I'm trying to do that.

  2. Love how your boys running around without shoes :)) So my life!

  3. Friend, you simply take my breath away. I consider myself a "wordie" but can rarely find the words to describe how much your writing speaks to my heart. And, those two little loves, too, all covered in fairy dust <3
    I also feel I should call you out on the "Poo-casso" - ok, sure it's wayyy too punny, but kinda brilliant so you get a pass :)
    I will be praying the surgery goes well & the doctor insists on extra bed rest.
    Love & happiness to you, sweet momma. And a speedy recovery. Jennifer

  4. Praying for your surgery, Chrissy! Like Jennifer above, your words speak to me. Thank you!

  5. Lipstick is out. I just peed my pants!! What an accurate description! :)
    This post is awesome and I can relate to the Poo-casso incidents. Sometimes, you have to laugh so you don't cry. I will be praying for a quick recovery for your shoulder.

  6. This post really touched me. Thank you for your beautiful writing. Best wishes for a speedy recovery!!

  7. Two faces of Parker - very cool pic. Love your photos and your words.
    Best of luck with your surgery.
    Your boys are so incredibly blessed to have you as their mama.