Susan's Blog

Monday, July 3, 2017

The Third of July

July 1 was my wedding anniversary. July 3 is an anniversary, too — but a terrible one. It’s been exactly a year since Nat came home with a big bruise on his chest and we then discovered he had fractured ribs. The state investigation yielded no clear findings, no evidence of abuse or neglect. We will likely never know what happened. And we have to grapple with the painful fact that Nat could not or did not tell us that he was in pain.

I had him come home last night for a special cookout because I knew he was going to be at his day program today and then at his group home for the Fourth. They are planning a cook-out with two other houses, so it sounded like it would be a pretty good celebration for him. We are not doing much of anything here, so I figured it was okay to have him be there on the holiday.

But family holidays should be family holidays. Even when the family doesn’t have a clue how to celebrate. Ned and I were going to go on a bike ride together today and Nat would probably enjoy it, but he is at his day program.

Driving in the car with him next to me, hearing the rise and fall of his self-talk, I felt the pain ball up tightly in my chest, but I told myself not to cry, not to show it. Not until I’d dropped him off at the day program. Why why why do I feel sad, I wondered. So sad, and yet he’s going to be having a nice enough day at the day program. And a cook-out tomorrow at the group home.

What makes him happy? I wondered this as I always always do. Looking around desperately for something that would connect us, I glanced at the radio and switched from NPR to Magic 106.7 — his favorite. I should always play it when he’s in the car but I can’t stand it. This selfishness I allow.

We were early at the day program and he said, “No early,” because he wanted to go in — either because he likes it or because it is the routine — (or both). So I decided we could spend a little time at a nearby farmstand with a muffin. He ordered it himself at the counter, the guy understood and did not make me corroborate what he thought Nat had said. One small victory. Nat ate the muffin in the front seat, coating his lap with a soft yellow layer of crumbs.

He was greeted by the assistant program director when it was time to go inside, and he walked in without looking back. I had to call him back so that I could get a Goodbye Kiss.

Is it okay to bring him to a carefully-manufactured adult life, and not keep him with me? On this most terrible anniversary, I cannot feel it is. I kept driving, though. Some part of me must feel that this is okay for him. He can’t live with me forever. Although he did for eight months last year after we discovered the injury.

The plan is for him to live very very close to me and be an intrinsic part of the family life while also building a life apart. He is doing that, but is it a happy life apart? The rolling cadences of his self-talk seem smooth but quiet. I suppose that’s good. Anxiety, for Nat, is clear and sharp as broken glass. So he’s not anxious, right?

But I can’t escape the press of sadness against my eyes, so at odds with the bright sun of the Almost Fourth.

It’s the Third of July, a date that now might always spill darkness over the Fourth’s majestic lit-up night skies.

3 comments

Ok so yea…
There are those days when I live in total hope of a quality life for Ashley.

And then there are days with just a hint of a memory, of the injustices she has faced, I am arrested by the Anguish that floods me.

I am then on an opposing side of two points on a continuum. Hope and Anguish. They both solicit anthems from my soul. One loud filled with strings and woodwinds. The other quiet with only horns, like soulful blues.

Even though it is me that rails back and forth on these waves, it is never, never, never about me. It’s about her, all day, every day, every night, and every morning.
I hear you…

— added by Lauri Medeiros on Tuesday, July 4, 2017 at 2:16 pm

Very well written, Susan. The sadness in your words touches my heart. I pray God will give us all strength to endure the heartbreak that comes along with watching our children suffer from autism. I honestly don’t know how we keep pressing on when the pain is ever present. I’m glad you have your husband to lean on and help you.

I read yesterday that Medicaid funding for respite services have been cut for Army families. The Army wives with special needs kids need help so bad. It makes me angry to think that funding is cut on those who need it most. I don’t think we should give one dime away to other countries until we have Medicare or Medicaid for all and Community Services FULLY FUNDED for all special people.

The only thing that keeps me strong is knowing that one day God will call us all home and there will be no more suffering and no more Autism.

Mother’s and Father’s get sick when their children struggle with ASD, and the longer we watch them suffer, the sicker we get. Broken heart syndrome is REAL.

— added by Win on Friday, July 7, 2017 at 2:05 pm

Susan, I think about these issues constantly, and Justin is only fourteen. I really don’t know what is best for him and for us, am grateful we have more time to decide. I hear you and feel your pain regarding everything. Thank you again for putting such beautiful thoughts into words.

— added by kim mccafferty on Friday, July 21, 2017 at 5:24 pm