Wednesday, October 26, 2011

Taking Off

The title of the blog is in honor of Eman's pilot costume for Halloween. Updating Eman's life will take much, much longer. But I know someday I will want to look back and remember all this so here goes:

Last week, our priest gave a homily on love. He said, "love is not a warm and fuzzy feeling, it is an orientation of our actions."
We have really been doing our best to love Eman.

Eman had an extremely rough August. So physical, so violent, so much so we were concerned about the next minute, the next hour. How will we be able to keep doing this? After an intense five days, an increase in medication finally helped.
Then, I went to my adoption support group. (there are support groups for everything aren't there?) There was a woman there who had never been before.
She spoke just before my turn and said, "we've been doing biofeedback therapy with our 18 year old son. It seems to help."
I interrupted, "What's biofeedback? Where do I get it?"

So I called the center in Bethesda, Maryland and took Eman in. The first step, a brain map to see if biofeedback would actually help.
The next day I go in for an interview. Dr. Esty has the results.
Dr. Esty is an older woman who often wears the same outfit, a long skirt, a blouse, and a sweater vest. She could be anyone's grandma. She struck me as a very intelligent woman who would have trouble figuring out how to make a xerox copy.
She sat in a rocking chair and asked me several questions. Then she got out her diagrams.
"It looks like your son has a traumatic brain injury, " she said.
"Look at these graphs, there are abnormalities in every part of the brain. Most likely he only hears static when you tell him to do something. See all this activity here? This is the quiet part of the brain. See all this quiteness here? This is the active part of the brain."
I remember sitting there, looking at her paying attention to every word, her clipboard, her pencil, her softspoken but firm plan of how we were going to move forward to treat or save Eman.
I got to my car and called Scott, "I'm so sad for him."

The next night, Scott went to his 'mancave.' I mumbled negatively in my head.
The next day when I went to use the computer I found a stack of research he had been doing on "raising children with traumatic brain injuries."
I scanned through some of the articles. The advice: don't trigger them. Take out things that will cause episodes. Raising a spoiled child is the least of your concerns.

So we went back a few times and had electrodes put on Eman's head. We noticed no change, but after every appointment, "that will be 90 dollars." Can you at least say please? It's too controversial so insurance isn't on board.
Ok, this is an expensive visit that takes an hour to get to. Maybe you won't be our answer to 'saving Eman.'
But the whole thing did get us to make an appointment with a pediatric neurologist who hopefully can give us an MRI and an exact picture as to what's going on.

In the midst of all of this, a friend told me about an 80 year old lady who lived a block down the road from us who was talking about Eman. The woman was raising a granddaughter who was a friend of my friend. What she told me, worried me. You see, the last couple of times we've moved I've been very deliberate to tell neighbors about Eman. That is so if they see a two hour "big mad" or hear a lot of screaming, they won't give it a second thought. It was time for me to meet the grandma down the road.

I greeted her in her driveway. "Hi Evelyn, I'm Sue, I just moved in, I thought it was time for you and me to get to know each other."
She looked startled but invited me in. Her living room, looked like my Grandmother's living room. Everything was in its place. There was no evidence of a child ever being in that room.
"I"m sorry it's such a mess," she said. Oh dear I thought we are not going to see eye to eye on much if she thinks this is a mess.
I told her about Eman, about our goals about how she could support us.
"Well, I appreciate what you're trying to do with those colored children," she said in her thickest southern accent.
"Oh yes, they want to be called black now," she said as calmly as if we were sitting on a southern plantation watching slaves pick the crops.
"They ARE BLACK!" I said getting angrier.
"Now don't you raise your voice in my house," she said
"I apologize."
"You know I moved here in 1948 and I was racist. But then I had my granddaughter and I love her to pieces, but she has a very tough life ahead of her," she said.
Her granddaughter happens to be biracial.
"Uh, Evelyn she doesn't have a tougher road than anyone else, things have changed," I said at this point I was pretty sure I was in the twilight zone.
"Well, I guess they are starting to change but it will be tough. I am sure you love that boy like a son," she said drifting off as if she needed more lemonade to finish her thought.
"Yes, that's because HE IS MY SON," I said firmly.
Feeling like I was in a movie, I decided to end the scene. As I stood to leave, Evelyn reached to hug me and said, "well I hope we can be friends."
"Yes, I'll call you as soon as I need someone to watch Eman," I thought.
Evelyn waves every time I pass now. I haven't heard any more rumors about Eman.

But Eman is enough to keep up with without worrying about the neighborhood. Every day he does something that could make me laugh...if I wasn't his mother.
Just now he came in, "I wanted to put the candy in the bowl."
The candy, is the Halloween candy that had been hidden far, far out of reach of an eight year old. Eman found the candy and put it in the bowl. He also ate six pieces before I had a chance to say NO.

Eman has a male teacher this year, Mr. McGuire.
Mr. McGuire is new to the school and one of the most positive people I have ever met. He and his wife are both second grade teachers, with no children of their own.
At the open house he started by saying, "I just love all your children. They are all wonderful and polite and we are going to have a great year."
I wanted to raise my hand and say 'have you actually met the children?'
He gives happy notes and Eman has gotten two. Eman loves to get happy notes and that's his new goal in life. Whatever works, I'm all for it.

Eman still plays soccer almost every day. His coaches are still amazing.
Eman sleeps with Mommy and Daddy every night. It is OK with us. We want to have him be safe and hugged as much as possible. Every now and then, I lay right down beside him and whisper in his ear, "I know you are going to be something great."


The Googeg's said...

I hope the pediatric neurologist has some answers for you. After all this time -- Traumitic Brain Injury -- it's amazing how we have never quite ever got the whole picture on our kids.

Someday we are going to meet at a Starbucks.


gretchen said...

Okay, the last sentence made me all teary eyed. I so believe he is going to be something great too.

Praying you get some answers soon, knowing God sees all that you are doing now and can work wonders with our simplest gifts to love another. ;)

Melody said...

Raging at that lady. What a horrible woman. I feel sorry for her granddaughter. I'm sure she's well-loved, but what impact will her grandmother's attitude have on her self-confidence?

I hope knowledge of Eman's injury relieves some stress in your minds at least-- you're not making it up, and its not his fault. He needs help, and now you know how to start finding it for him. Good luck with the pediatric neurologist.

The Johnson Family of Seven said...

That was such a moving post...I was sad, happy, angry and happy. I am always thinking of you all hope you can get some answers soon. That darn candy! I threw 95% of our candy last night....after being asked 674 times a day for candy and saying no only to have a kid who would pout the rest of the day.

tnt7kids said...

wow, that was a twilight zone experience! i guess all my 7 'bi-racials' are doomed!!! great blog! Joga for life!!!

Bob Wolff said...

You and I have never met, but I grew up with Scott. I've enjoyed reading about your family over the years. You are very talented crafting the ups and downs and drawing me into your stories. I'll be thinking about you and Scott as you continue what sounds like a wonderful parenting extravaganza! Cheers to the new year.