A Public Life

I started this blog to share Neil's latest condition and progress with family and friends as he lay near death in the hospital and then began his long process of healing. It became a therapeutic tool for me as well, to put what was in my heart into words. As Neil has become so much more aware and cognitively coherent I have sometimes wondered if it's been fair of me to post his personal struggles in such a public forum. Will he ever look back at what I've written and cringe? At this point he seems happy with the attention his semi-notoriety brings him. These days I am eager to find ways to bring a smile to his face as he battles the loneliness of finding his pool of friends shrinking.

I guess that's why I consented to the camera and microphones that followed us around on Monday. A New York production company is putting together a short documentary on TBI and wants to include Neil as one of the participants. They came to our home and shot him and Eric and friends playing Wii "therapy" and filmed him cooking some steaks on his new indoor grill. After lunch they followed us to Kessler for his real therapy. Therapists and staff had been prepped in advance and did a marvelous job of explaining Neil's tasks as he toiled away. Everyone worked hard at acting natural while educating, though it was hard not to look at the camera! Unfortunately for me, I had a bad hair day and somehow gained an extra 15 pounds just before they arrived!

This week was just a test shoot. If all goes well, Neil will be featured on MTV's True Life Series. I will certainly let you know how this thing progresses--unless of course my hair just looks too bad!

Caught On Film - Revised

Check out the sidebar! If you click the picture of Neil in cap and gown you'll connect to the video shot by Artie's mom. Thank you so much Ali!


--Oops. Thanks to Nancy for the camera work. And thanks to Ali for downloading and copying the film to disk. And thank you Eric for helping me get it onto YouTube and linked to the blog. I love technology!

Growing Pains

It's been hard for Neil to hear his recent test results. The therapists and psychologists are as kind as possible--praising him first for his attitude of perseverance and his friendly and cooperative manner--before they share his scores that often fall in the "below average" or "impaired" range. He understands that that's to be expected because of the injury. He also understands that he's continually improving and we're all working and hoping for a near full recovery. But it still hurts to have those scores stated out loud. As I see his face drop a little my heart aches, but I also recognize that his reaction represents progress in two ways. First, he is growing in his ability to see the big picture, to recognize his deficits, to understand what he needs to do to fix them. Secondly, Neil is able to feel the emotion of sadness. Without that sensation he would not be able to recognize joy. Experiencing that full range of emotion is going to be so much more satisfying for him than the flat existence he was living only a few months ago.

As it turns out, Neil is not ready for Kessler's cognitive program--not just yet. For now, Neil will be spending his mornings at the high school this fall getting some help with skills that he's lost and getting a chance to socialize with teens again. (Yay!) Then we'll be off to Chester for his usual therapies in the afternoon. It will be a busy schedule, but he can't wait for school to start!

The Worth of a Soul

Neil and I sat in a conference room at the high school this morning discussing the results of his recent evaluations and his IEP. As we listened to the school personnel discuss their findings and options for the upcoming school year I was overwhelmed with gratitude for the resources available to Neil and to us. So much time has been spent already in planning for his success. Neil's own goals have been at the top of everyone's list and we are all coordinating efforts to work toward that aim. Neil must have been experiencing similar feelings as my own as he leaned over and said, "My accident has sure charged the school a lot, as well as you and Dad." I wasn't sure what he was saying at first, but as he tried to explain I realized that by "charged" he meant "cost." He was referring to all that had been done, and would yet be done for him--medically, therapeutically, educationally--by so many. I don't know if he perceives it yet as more than just a money issue, but it's interesting to see him begin to grasp the magnitude of what has happened to all our lives. As we walked out to the car after our meeting, Neil said he felt like an idiot for getting into that accident. Of course we talked about accidents being just that--accidents--and that it was pointless to fret about a past that can't be changed. But he finally smiled when I pointed out that he might want to look at the "cost" he referred to as an indicator of his value. It takes a village, an extended family, loyal friends, teachers, doctors, professionals, volunteers, and so many more to help a boy meet his potential. But it's worth it. He's worth it.

Good For What Ails You

Botox--It's not just for wrinkles any more.

Neil had six injections in his left arm on Monday. You might be able to see some of the injection spots in the picture if you click on it. By Thursday he should start to feel some relaxation in the muscles that have been so tight. This will give the competing muscles a chance to get stronger so that he can gain some control of his left hand. Although movement in his hand and arm have s-l-o-w-l-y been improving with therapy, we're hoping this miracle drug will give him a little boost to speed up the process. He practiced playing video games yesterday and was a little disappointed that it was still hard, but he wasn't surprised. He knows it's going to take more time, more therapy, and a few more series of injections. Neil is no stranger to being patient. In fact, he's getting pretty good at it by now.

Speaking of more injections, Neil is not worried about getting the shots any more. He found out that the Teflon coated needles they used were painless!