What day is it? No, really. Today feels like Monday, but I know it's Tuesday. There are so many things I need to keep doing, to catch up on, but I keep forgetting what day it is. Between the long weekend and the lost day yesterday, I'm struggling to keep up.
Over the past week, everyone in the family received a visit from the infamous stomach bug. We had a reprieve from Wednesday to Saturday night, but it still feels like all we've done is run the washer, wipe everything with a disinfectant wipe, spray the things we can't wipe, and otherwise wash, clean, and scrub with fervor driven my the thought that one more of us might not get it.
Yeah, so... everyone got it.
Despite our best efforts to sanitize, wash hands, not drink after each other, and let's not forget the ever-popular "Stay away from me" cry, each one of us came down with a varying degree of ick. It was miserable. Ryan was first to get it. He was the easiest sick patient! Then Maelynn, then a break. Then Richie. Eric had a touch of it Sunday, then Mother and I were down all day Monday.
If you'e ever had that type of ailment, you know that misery too well. And while it was awful and I couldn't wait for it to be over, it had an end. The promise of an end to our agony was golden.
But what if there was no end?
What if the promise was better... maybe. But definitely not an end.
What if all those around us could discuss our challenges, our issues, our frustrations and host of other problems, and we could hear them... but could offer no discussion ourselves.
So often I wonder if this isn't where Ryan is.
No, I don't know exactly what is in that sweet little head. But I do believe that there is more than we think. I know there's more than he can express. Continually we are frustrated by education's best efforts at measuring and appraising his intelligence and abilities because they fall so short. We have good people who do their best to sift through and learn about Ryan while teaching him about the world around him, but when it's time to sit down and talk about what he can do and translate that into state-appeasing numbers, so often the result is wrenching.
We are doing what we can for him. We love him with all our hearts and want the very best for him. And honestly, we're a little nervous.
When you live with something like autism, you have one foot in the future at all times. I've talked so many times with people who encourage us by saying how much he's improved and how we shouldn't worry because he'll grow out of it. I've even listened, bristling, through talks from well-meaning religious teacher-types who insist that if we simply had enough faith, that silly ol' mountain would just move right out of the way.
The truth is that the odds of Ryan simply growing out of this are not good. He will likely improve, yes. But how much we don't know.
I know that this sounds horribly unhopeful. I know it sounds like I'm giving up on faith, dismissing it in favor of wallowing in the mire of the moment. Hold on.
With the things we live around, I need a deeper hope than one that says "if you pray real hard and you're a real good girl, God will wave his wand and make it go away." I need... and live in... a hope that says "It's hard. But I'm with you."
I need a hope that helps me see how to enjoy life the way it is.
I need a hope that gives me a reason to get out of bed and keep trying, even when my day starts with screaming.
I need a hope that is more than a vending machine. I need a hope that cannot be manipulated by what I do or do not do.
I need the grace that covers my inability to be a good girl and be happy-perky all the time.
I need the mercy that covers my selfishness and desire to just lay down and cry.
I need the words of comfort that I'm not the first one to need to lay down and cry... and someone to cry to.
I need to be encouraged that, although there will always be people who don't understand or just don't care, and in that moment, God has my honor. I can simply, calmly, educate where I can.
I need hope that reaches through the noise of the difficulty and differentness, bringing me back to rest in the knowledge that Ryan is just as fearfully and wonderfully made as any of us.
I need hope that is bigger than something happening or not happening.
I need hope that gives me courage to accept all that is... and the grace to start over when I refuse.
I need the sovereignty of God.
Because this ain't gonna be over in 24 hours.
Thanks be to God for his sovereignty.
Over the past week, everyone in the family received a visit from the infamous stomach bug. We had a reprieve from Wednesday to Saturday night, but it still feels like all we've done is run the washer, wipe everything with a disinfectant wipe, spray the things we can't wipe, and otherwise wash, clean, and scrub with fervor driven my the thought that one more of us might not get it.
Yeah, so... everyone got it.
Despite our best efforts to sanitize, wash hands, not drink after each other, and let's not forget the ever-popular "Stay away from me" cry, each one of us came down with a varying degree of ick. It was miserable. Ryan was first to get it. He was the easiest sick patient! Then Maelynn, then a break. Then Richie. Eric had a touch of it Sunday, then Mother and I were down all day Monday.
If you'e ever had that type of ailment, you know that misery too well. And while it was awful and I couldn't wait for it to be over, it had an end. The promise of an end to our agony was golden.
But what if there was no end?
What if the promise was better... maybe. But definitely not an end.
What if all those around us could discuss our challenges, our issues, our frustrations and host of other problems, and we could hear them... but could offer no discussion ourselves.
So often I wonder if this isn't where Ryan is.
No, I don't know exactly what is in that sweet little head. But I do believe that there is more than we think. I know there's more than he can express. Continually we are frustrated by education's best efforts at measuring and appraising his intelligence and abilities because they fall so short. We have good people who do their best to sift through and learn about Ryan while teaching him about the world around him, but when it's time to sit down and talk about what he can do and translate that into state-appeasing numbers, so often the result is wrenching.
We are doing what we can for him. We love him with all our hearts and want the very best for him. And honestly, we're a little nervous.
When you live with something like autism, you have one foot in the future at all times. I've talked so many times with people who encourage us by saying how much he's improved and how we shouldn't worry because he'll grow out of it. I've even listened, bristling, through talks from well-meaning religious teacher-types who insist that if we simply had enough faith, that silly ol' mountain would just move right out of the way.
The truth is that the odds of Ryan simply growing out of this are not good. He will likely improve, yes. But how much we don't know.
I know that this sounds horribly unhopeful. I know it sounds like I'm giving up on faith, dismissing it in favor of wallowing in the mire of the moment. Hold on.
With the things we live around, I need a deeper hope than one that says "if you pray real hard and you're a real good girl, God will wave his wand and make it go away." I need... and live in... a hope that says "It's hard. But I'm with you."
I need a hope that helps me see how to enjoy life the way it is.
I need a hope that gives me a reason to get out of bed and keep trying, even when my day starts with screaming.
I need a hope that is more than a vending machine. I need a hope that cannot be manipulated by what I do or do not do.
I need the grace that covers my inability to be a good girl and be happy-perky all the time.
I need the mercy that covers my selfishness and desire to just lay down and cry.
I need the words of comfort that I'm not the first one to need to lay down and cry... and someone to cry to.
I need to be encouraged that, although there will always be people who don't understand or just don't care, and in that moment, God has my honor. I can simply, calmly, educate where I can.
I need hope that reaches through the noise of the difficulty and differentness, bringing me back to rest in the knowledge that Ryan is just as fearfully and wonderfully made as any of us.
I need hope that is bigger than something happening or not happening.
I need hope that gives me courage to accept all that is... and the grace to start over when I refuse.
I need the sovereignty of God.
Because this ain't gonna be over in 24 hours.
Thanks be to God for his sovereignty.
This is so good. There are no pat answers. You are speaking of a hope many have trouble understanding...it doesn't fit into our "consumer," instant-answer culture. Thanks for sharing!
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