It's quiet in my living room. I can hear Richie and Maelynn breathing in their sleep (yes, I let them sleep in the living room today). I can hear the rain and occasional thunder from the glorious storm outside. Oddly enough, it matches the storm on the inside.
Yesterday The Weather Channel kept texting me. "A Severe Thunderstorm Warning has been issued for Groesbeck, TX" it said, over and over. After watching the hopeful green and yellow on the weather map fade around Groesbeck all spring, I can't help but think, "Sure. I'll believe it when I see it." This time, it really rained! It stormed all night last night, and all day today, pretty much. I prayed hard yesterday for rain, but no tornadoes, please. We just went down that road, and I wasn't impressed. Rather I was impressed, but not in a positive way!
After picking up Ryan from school, we four made it back into the house to get ready for the evening. I attempted to be interested in things I needed to get done, but my attention completely lie in Ryan's Toy Story 3 backpack. Once I got everyone somewhat settled, this time on "Potty Elmo", still one of Ryan's faves, I sat down at the kitchen table with my coffee and got the plastic folder out of Ryan's backpack. Just as the diagnostician promised, there was a large manilla envelope inside. Fumbling with the metal brads, I reach the contents and begin to read. The report from the psychologist was very thorough, going back to Ryan's gestation, birth, and milestones. This was the culmination of the scads of paperwork involving hundreds of questions I answered with so many desperate words. Desperate to communicate that we LOVE Ryan. He is a great little guy! So loveable, so smart. We want what is best for him! We want God's best for him! We believe in what God made Ryan to be! Never had my no. 2 pencil flown with such urgency. Such desire to say the honest thing, no matter how embarrassing it is or how much it hurts. Every time I fill these things out, I get so worried that I'll answer wrongly, or accidentally be too harsh or easy on him. Imagine my surprise when I flip to the part that tells me that my answers were in a believeable pattern. Alrighty then! Looks like they had something in place all along to make sure the results were accurate. Silly girl; just answer the questions.
I read through all this mess, then got to the part where it says very plainly that the tests show that Ryan is severely autistic.
These words still hang in my mind the same way the word "autism" hung in the air when it was suggested by the first psychologist in 2008. But "severe"?
Yeah, 'fraid so.
I realize that this diagnosis does not change who Ryan is. Yes, I was honestly hoping for something a little lower on the ASD totem pole (though they're all challenging), and this was a bit of a blow. But that's all. Just a bit. I've already been living with this feeling of things changing... things getting more serious. I told Eric one day about a month ago, when we began realizing that our church involvement was about to diminish a bunch for at least a while, that I had a sinking feeling that we did not yet know the meaning of "sacrifice".
Hate it when I'm right.
As I read on in the 12-page report, I didn't cry. Didn't flinch. Didn't fall apart. I was able to read, comprehend, and remember that this is still Ryan. He may be a Mac in a PC world, but he's still Ryan. It was honestly a little freeing. Kind of justifying. Making that feeling that things are just different for our family real; giving me more concrete proof that yes, Ryan has to be cared for more and differently than typical children. That yes, my shaking my fist and crying out "But I wanted to be on the SUPPLY end of ministry... not the DEMAND end!" I wanted to be just like so many cool Christian families I watched as I grew up.
But God had other plans, and still does.
I started praying a long time ago that my will and His will would become the same thing, that I would have a heart like His... and although I know I will never be perfect, and His ways will always, no matter what be higher than mine, that does not excuse me from doing my best. Neither do the lives of people around me! Horizontal comparison of one's life and abilities can't lead to good things. There will always be someone better than you at what you do, and there will always be someone worse. Be it money, ability, posessions... whatever it is, "it" will never be enough. Not as long as I continue to compare to those around me. Material things aren't my temptation in this vein, and the same goes for money. The Lord provides and always has. But I just can't seem to shake the "what it looks like" feeling. What it looks like if we can't attend church get togethers, and some things that just don't work for us. What people are thinking when Ryan starts his screaming and slapping his head thing in the fat middle of a concert, church, or in a store.
What I'm learning right now is that I don't have to live by what others have thought, or what others are thinking or saying. While it is my responsibility to be respectful and kind, it is not my responsibility to make others think I'm doing all I can. Having been raised in a small community, I know how people talk. Believe me. I know the pain that causes. And here I am, living in fear of what might happen if I do what I feel is best for my family. HOW SILLY! I know better, and yet here I sit. Here I sit, afraid of making anyone angry or uncomfortable, no matter how uncomfortable I am or my family is.
And I'm done.
No, I'm not done with the church. Quite the opposite! I believe in the importance of the body of Christ in the life of each and every Christian. I am, however, done with attempting to fit the mold. Or even trying to figure out what the mold is, for cryin' out loud! Now that I'm the proud mother of three, one of whom is severely autistic, I can see why I didn't fit in in high school. I can see why my husband didn't, either. We know what it's like, and we were being prepared to be who God wanted us to be as parents and adults. I could go on and on whining about the pain of not being the same and how lonely and sad I was in high school, and a lot in college, too. But as a 32 year old mom who needs to understand that her boy is just different... not bad, but different... it is of the utmost importance that I recognize that as God's hand! NO I'm not condoning cliquish behavior, bullying, mean-girl brattiness or flat out discrimination. Those things are terrible and I'm against every one, and wish they would all just go away. But the truth is that we live in a fallen, sinful world and those things will not go away.
So what do we do? If I am confident that God has made me and my children with a plan and a purpose in mind, well, those things tend to sting less. If I live with my vision for my life being to fit in with everyone else, to always be smiled at, to always be the best, to always be the most loved, to never hurt anyone's feelings, to be a chameleon at all cost, I will surely live in misery. That is not at all who I am designed to be, and it is definitely not what Ryan will be. It is my hope and prayer that it isn't what my Richie and Maelynn will be, either. So I want God's best to be my vision. My vision for Ryan, Richie, and Maelynn; my vision for my marriage, my home, and my ministry (yes, we all have one... whether it's recognized or not) is to live as close to God's vision for me as I can possibly get.
So as I keep feeling my way through this autism thing, and as I figure out what role I can play in ministering to other parents and children in the ASD community and as I continute to minister to my family first and foremost, this is my prayer and I pray that it will be that of my children, also(so sorry I couldn't find a recording that wasn't obnoxious):
Be Thou my Vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best Thought, by day or by night,
Waking or sleeping, Thy presence my light.
Be Thou my Wisdom, and Thou my true Word;
Be ever with Thee and Thou with me, Lord;
Thou my great Father, I Thy true son;
Thou in me dwelling, and I with Thee one.
Be Thou my battle Shield, Sword for the fight;
Be Thou my Dignity, Thou my Delight;
Thou my soul’s Shelter, Thou my high Tower:
Raise Thou me heavenward, O Power of my power.
Riches I heed not, nor man’s empty praise,
Thou mine Inheritance, now and always:
Thou and Thou only, first in my heart,
High King of Heaven, my Treasure Thou art.
High King of Heaven, my victory won,
May I reach Heaven’s joys, O bright Heaven’s Sun!
Heart of my own heart, whatever befall,
Still be my Vision, O Ruler of all.
Words: Attributed to Dallan Forgaill, 8th Century (Rob tu mo bhoile, a Comdi cride); translated from ancient Irish to English by Mary E. Byrne, in “Eriú,” Journal of the School of Irish Learning, 1905, and versed by Eleanor H. Hull, 1912, alt.