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9.29.2008

Ten Days

So sorry for the ten day hiatus on yon blog.
Swamped with stuff here and news from Florida has slowed. Andy's not slowing...just the flow of news around him. From all accounts Andrew is kicking butt and takin' names, as usual. Dad spent a week with him last week and I will post his email following.

The good news:
I can have my personal life back now that the 52 page cruise scrapbook for NWYC is done. Joal's taking it to the company anniversary gala this weekend. For those of you who may have missed it, every year NWYC (the company Joal is part of) sends their top producers on a Caribbean Cruise. We went on the cruise in March. Every year I make a scrapbook of the cruise for the company to show off in their home office in Dallas using as many photos as I can cajole people to contribute. This year I took more than 800 photos myself!

The book should have been done months ago but I've been a bit out of sorts and getting it done was like giving birth...slow and painful. :) Next year you better believe that I will not let it drag out.

I feel like I can breath again, finally.
Now we can focus on the wedding!

Here's Daddy's note about his time with Andy:

Dear Andy's Family,
Well I'm back from Florida and it is a beautiful place. It has breath taking views down extremely long halls. It has sparkling, beautifully waxed floors. It has ceramic tile... oh, no, wait, that is the hospital. Well, come to think of it, that's about all I saw of Florida, but it really was beautiful. It was a place of healing and hope and I saw a lot of that going on.

Really, I did see a little of Tampa on two occasions. One was coming in, on the plane. Again the Hero Miles Program operated by the Fisher House Foundation made the travel super easy. As we arrived over Tampa I looked out the window of the plane to see beautiful homes lining what seemed like endless shore lines. It could easily have been one of those aerial shots for CSI Miami. (Maybe they really shoot those in Tampa.)

Daniel and Staff Sargent Main picked me up at the Airport and took me to the hospital. When I first saw Andy, he was working on some occupational therapy and he had his back to me. My first impression was, "he looks frail," so I hugged him even longer. That was the last time I got to feel sorry for him because he would have none of that.

Knowing that I was the "rookie" who was going to be filling in for Daniel (Mr. Experience, at this point) Andy gave me two very important instructions while I was there. The first went like this: "Dad, the idea is for me to not look like a dork, and you to not look like a chauffeur." The second was: "Dad, if I don't ask you to do it, don't do it." (He raised his voice a little on that last part - for emphasis I guess.)

He had to repeat that last instruction a few times over the first couple of days. It was the little things that tripped me up. They seemed so easy for me and so hard for him, so I did them automatically. Then would come that raised voice again (I let him get away with a little more along those lines than I used to). Mr. independent might ask for a bottle of water, but he didn't want it opened. He might want his razor off the table, but he didn't ask me to turn it on. And so it went until I finally got the message: "I have to learn independence again."

It is at once an inspiring and heartbreaking thing to watch. It is inspiring to observe the character of my son rising to such heights in the face if such a daunting task. It is heart breaking to watch the pain of the process, itself. Every little thing has to be consider and analyzed. The small things, the ordinary things, the automatic things - there are none of those any more. The frustration is enormous but every day he goes at it, and every day he gets better at it.

Andy is surrounded by some great people at James A. Haley. The therapist are mostly young highly trained professionals. They seem to not only know therapy, but people. Andy relates well to all of them and he looks forward to therapy every day. He seems more at ease working there than anything else he does through the day.

While he works they also laugh and joke and talk about movies and music and pick on each other. Often in the last therapy session of the day (3-4pm) there are fewer patients in the "gym" and other therapist will come over and sit around and talk and gab and laugh. But the work always goes on.

On one such occasion when Andy was on the "Tilt Table," a device that re-trains his body to control blood pressure when he is vertical, Andy decided to entertain the group. He was strapped to the table and standing at 80 degrees while his blood pressure leveled out. Somewhere in the background some music was playing, so, Mr. Andrew put his hands on his hips and started moving his head and hips as though he was dancing. He made all of our hearts dance with him. It was quite a moment.

Andy has a way of creating those moments often though. At one point we were discussing some mistake that I had made in "disability etiquette," and he was giving me a hard time. I wasn't really looking at him, I was just listening - mostly. Then I caught the end of a paragraph. He said, "I don't know how I turned out so good." I instantly cut my eyes around to his face only to meet that stupid, crooked smile of his.

And the boy never quits pushing himself. If you remember from previous Andy Updates, because his energy level was so low at first, the therapists wanted him in the fully-motorized chair so he negotiated for half time in the assisted chair (You put in a little energy, it puts out a lot of spin.). Some of you may remember that I told you that he would re-negotiate that deal before it was over. Well, it came to pass. When I got there Andy was in the assisted wheel chair. He had already negotiated that to full time but he still wasn't happy about it. He wanted a manual chair, so he warted them until they gave him one. (Really they are very accommodating to his aspirations.)

The first day or three, it exhausted him and frustrated him to no end because his hands don't have quite the strength of grip required. It was difficult to watch him return to his room at night with zero energy left for anything. After a couple of days, I had watched about all I could. I asked him to consider that maybe it took too much energy for now. Big mistake. He said, with perfect resolve, "Dad I can do this. And, I have to do this."

And he did.

By the first of the next week he had tried several different kinds of gloves that successfully improved his grip and therefore his ability to move the chair. His body began to adjust amazingly quickly to the energy need. So, by Monday Night Football time he was wheeling and dealing in the manual chair. We went to Fisher House where I stayed on the hospital grounds, propped up in front of the big screen TV in the den area, ordered pasta from Pizza Hut, and stayed up late watching the game. It was an amazing time and a highlight of the trip for me. By 11:00pm he was tired but then so was I. So, much for "can't do."

Besides personal independence, the other issue that Andy is dealing with is "perception / respect." He has a new identity that is connected to a wheel chair and he is still a little insecure about that. The idea is "How will people look at me now?" But, as usual, he is dealing with it, and he is doing a good job.

Over the last several days of this visit, I have been amazed at the escalating personal gravity that Andy has. So much so, that I have begun to see him so very differently myself. The child image and awareness that has been so long ingrained in my mind seems now to have gone away somewhere. To the point that, where once I was more likely to give Andy advice on life, now I am just as likely to ask his advice. I think he will have no trouble with the issue of respect. He just needs a little time to discover that for himself.

Well, I better close. It was a great time in Florida. I cannot wait to get back. It is a pure joy to be with Andy there. Thanks so much for your continuing prayers. They become the energy of his daily achievements in the very real terms that I described.

Our love,
Larry, Donna and Family

1 comment:

Melissa L. said...

Sarah, I just wanted to say again that the Cruise scrapbook was truly a work of art. And again, I think the only thing that should be changed is the part that says "Assembled by..." - that really does not adequately describe what you have done. "Created", "envisioned", or any number of other words could be used instead, because what you have put into that is your heart, which is more than simply "assembling". Many thanks for creating that for everyone in NWYC.

So good to see you Saturday night, wish I had had more time to talk with you.

Melissa