Thursday, October 2, 2014
I should not be taking time to sit and write. Here's my view of the world this moment:
The clothes to the left need to be stored away in totes, in case we have another boy that wears size 2T clothing. T-Man has outgrown them. The train sitting on the desk needs new batteries. But first I need to buy more batteries. The giant stack of papers to the right is the bane of my existence. I need a secretary. When I leaned back in my chair to get a broad view of my chaotic room I squished N's backpack filled with three-week-old (undone) school work. The pink hat to the right of the screen has been sitting there for a month, waiting for a home.
But I am writing. Because everything is right with life. And everything is wrong. The rightness and wrongness of life depend on who I'm with. (Though my inability to get this stinkin' text to realign to the left is feeling very wrong, and I'm the only one here.)
Here's what's right with life: My family is awesome. My man loves my kids as much as I do. Here is he laying down the law with our wiggly little girl.
Though I am a novice at sewing, I did manage to throw together some fabric to make hero capes for Christmas last year. N's came in handy when he got a free meal for being dressed as a super hero. The most delicious thing was watching him face off with another masked boy. It was the stuff that commercials are made of. I didn't feel like asking the other action star's parents for permission to take his picture, so I'm treasuring that moment in my heart.
Something else right? Benadryl. Allergies are awful but medicine is available. Double bonus is the medicine makes children sleepy during the long drive back home from the neurosurgeon.
This couldn't get any better. M set up my hammock for me a couple of Sundays ago. First I swung out there in the breeze with my Bible. Then the wild ones joined me.
Here's what's wrong: The last sentence took five minutes to complete. Between typing the word "me" and the period I stopped to unclog a toilet, discovered a bathroom fixture defaced and sprayed a half gallon of lysol.
The day to day chaos of life isn't really wrong, though. That was thrown in for comedic relief. What's really wrong is how many government agencies I have talked to this week. Just typing that reminded me that I need to call someone back because I still haven't heard from them. Actually, I'm going to call them this moment and keep typing while I'm on hold.
I have spent the last year battling the medical field to get T the care he needs. It feels like that campaign is winding down now. Rather than resting, though, I am gearing up for the next theater of this war: education. Just writing that word raises my blood pressure. I have talked to many moms who have children on IEPs. (That's how everyone refers to kids receiving special education: they're on IEPs. IEP stands for Individualized Education Plan.) Every person has had the exact same advice: Be ready to fight. Advocate. Fight for what you know he needs. Don't let them steamroll you. Fight.
I am too emotionally entangled to clearly and concisely say why that is so wrong. Maybe my sister will figure out how to order my thoughts for me. My kid has a disability. Rather than receiving help we receive resistance. It is absurd.
The lady from the Department of Developmental Disabilities told me on Tuesday that our culture respects and cares for people with disabilities. This was just a few minutes after she told me the county offers many of the most crucial services to only 10 people a year. That is such an outrage to me that I can't think straight.
Having a kid with a disability feels really wrong when I'm filling out papers and watching him fail assessments. It is rotten when we focus on everything that's atypical about him. It's horrible to watch strangers' faces change as they realize he doesn't understand them or can't do what they ask.
Having T as a son is really right. He is funny and affectionate and forgiving. It is a blast watching him learn new things. There is peace that washes over me when we cuddle. He gives the best, most enthusiastic welcomes I have ever heard.
It is amazing how life can be beautiful and painful simultaneously. I wish I could run away from the monster of disability care and just take care of my kids. I can't. I am thankful that God has given me the ability to see the beauty He has flooded my life with, even in the midst of the pain.
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