Long Distance Calls

We talk to God alot around here. Not just talk, sometimes gasp, shout, and sometimes, just sometimes, cry. Our home is built on a foundation of faith, which is so appropriately Camryn's middle name. But the way we all speak to him in our own private moments as well our public outbursts varies greatly. So today I thought I'd do a post on what a family living with autism has to say to their maker.

As you all know, many times I walk into Camryn's room to find not only torn up books and broken toys, but stinky,poopy panties. And sometimes, she takes it up a notch with stinky, poopy footprints and stinky, poopy fingers. It's a phenomenon quite common round these parts and although I have moved way past the shock and awe of it all, I still find myself conversing out loud with God as I grab Camryn by her wrist and lead her to the bathroom. "Why God, why? What am I to learn from this? Patience? I think I have it down...really! Acceptance? Again, I've accepted alot of crap, and oh I so meant that pun, so I think I got it."
Meanwhile, Cams is trying to squirm away from me and usually ends up getting a smear of poop somewhere on my body. I usually stop asking the big guy questions around this time as I am too busy wiping Cams butt. As the toilet paper tears, leaving just my bare finger to finish the job, I find myself using the Lord's name in a very un-Godly manner, pairing it with curse words and then begging for his forgiveness right before I do it again. It's actually pretty funny now that I think about it, though at the time, humor is nowhere to be found. I know I shouldn't say those things, even if they are only in my mind and under my breath, but I think God understands. I mean, really,we're talking poop here.

Every night Brad reads the Bible to the kids and then we pray with them before bed. It's usually your basic prayer, covering everything from being thankful for our blessings and his mercy to helping the less fortunate. It is mostly Mason who says the bulk of it and then Natalie chimes in with her thanks for me, her Dad and of course, the dog. But the other night, Nat decided to tack on one more thing. It was dark and Brad was working late. I was dead tired from an especially challenging afternoon with Camryn and so ready for all kids to be on mute. Mason said her part of the prayer and I was secretly hoping Nat would have fallen asleep because I just didn't think I could stand there one more minute without falling over. But she hadn't. She began with her usual and then she started thanking God for the moon, the sun, the sky, the grass, etc. I was just about to cut her off when she added " and thank you God for Camryn's autism." Mason busted out laughing and Nat started crying and I was furious. "Why did you thank God for Camryn's autism?" Mason asked sarcastically. Nat was still crying, embarrassed by Mason laughing at her prayer. I sat down beside her and wiped her tears. "It's ok Nat, don't you worry about Mason." She looked up at me and said quite matter-of-factly "I thanked God for Camryn's autism because I don't care that she's autistic. That's what makes her Camryn and I like her that way!" Wow, my kids never cease to amaze me. "You are so right Natalie, you are so right." I turned off the light and not another word was spoken. Five years old and she already gets it. I was so proud.

Not only do we pray with Mason and Natalie, but I also pray every night with Camryn, though as most things do, it goes a tad differently. I tuck her in, give her all her comforts i.e. blankie, white tiger, and a book to hold, she has to have a book. I turn her sound machine to rain and put my face in her hair. I've said the prayer enough times that she knows it by heart, but whether or not I can get her to say any of it depends on the night. "Dear....." I wait for her to finish it. If she feels like it she will answer "Lord" in a very low, silly voice. I go on with "We ask that you...." And again, if she's up to it, she'll answer "forgive ush of our shins". Yeah, she says "shins", it's part of her silly voice that she talks in most of the time.We go on to cover all the things we are thankful for and then I say " We ask that you help Camryn....." and she finishes it with "To pleashe stop pinching and to ushe her words." Then I say "Please give all of us patience and help us to not get...." and she says "frushstrated". I then wrap it up with "In......" and Cams says "Jeshush name we pray, amen." It's one of my favorite times with her. Some nights it takes longer than others, as sometimes she will just lay there silently no matter how many times I prompt her. But I know she is listening to it all and could say the whole thing by herself if she were able. That is something I ask God for later in my own prayer.

There have been times, many times, that I have cried out to God in my moments of sheer desperation, trying to figure out why he chose this road for me. I'm happy to say  that it has been quite a while since I have had an episode like this and if I never have another that will be just fine with me. When Camryn starts her screaming and hitting her head, biting herself, as she often times does, I can usually handle it. And by handle it I mean  "check out" for the length of it, put on a straight face and maneuever around the house like a robot, emotionless and void of thought. It's the only way I have found to deal with it other than throw myself on the bed flailing my arms and legs, sobbing uncontrollably and biting my own hands and arms. But there are days, when I have had nowhere near enough sleep or just a little too much input, that I cannot handle her tantrums and those are the times I open up to the Lord, questioning his judgment and bargaining for a different way. I live by the philosophy "everything for a reason" but wow is it hard to reason an eight year old child shouting blood curdling screams while banging her tender head against the wall. He never answers in words, but I always feel a calm about me after my rant and just know in my heart that I was born to do this and I must go on.

When all is said and done and the sun has long gone down, I lay my head on my pillow and close my eyes. I thank God for my family, my friends, our health, and all the other blessings bestowed upon us. I ask for his forgiveness, I beg him for his mercy and I promise to do better with another day. I thank him for my children and pray he keep them healthy and safe, that he give them courage and guidance, strength and wisdom, humility and grace. And patience, lots and lots of patience.

And as always, he gives us what we need, though too often we confuse want with need and wonder why our prayers have gone unanswered. Like I reeeeeaaaallly want to be a size four, but I need to weigh  more than my daughter when she is refusing to get out of the tub and I need to lift her. And I want to live in a mansion, but I need to be near Camryn's room at all times in the event she gets stuck in her closet or poops all over the floor ( both of which are real possibilities). And don't even get me started with the stairs! And oh,  I sooooo want to live a normal life, but I need Camryn in it for it to be as it should. God knows these things and on days when I stress and worry I have to stop myself and remember....he's got this.

So this is how we talk to God and we have so much more to say. I know I will ask him again if he's sure I'm the one for the job. I'm sure Mason will seek his forgiveness a million more times for calling Camryn names. And I hope that Natalie will thank him every day for making her sister just the way he did. As for Cam, I don't know if she get's the whole prayer concept or not but if she does, I bet I know what she says to God. I bet she thanks him for Ry-ry and dog bones, liquid soap and tire swings, carousels and shoes. It's not your typical list of gratitudes but wow, maybe it should be. Typical or not, those things make her happy and at the end of the day if my daughter is thanking God for such instead of praying he keep her safe from strangers and make her skinny I can't think of any better way to respond to that  than a great big AMEN!