Her Race

I find recently that my humbling process continues, and with it an expanding view of ways to go and things to try. Yesterday we were in the neurologist's office talking about Baclofen. That has been an obscene word around me for the last three years, but it's time to put away my pride and seek what is best for Abbie. As her cognition soars, so does her frustration with her body. As we were loading up to go the appointment Debbie said,
"I just got the wierdest look from Abbie. It was unhappy, but she wasn't complaining or teasing like usual...she just looked at me like 'Get me out of here! I am stuck!'" I, too, have been getting that sense from Abbie lately as well..she is growing more and more aware that she is trapped in her body. This can sometimes lead to a defeating cycle: she becomes frustrated with her body so her tone goes up, which leads to an even greater limitation of her body and more frustration. I am hoping the Baclofen may provide a little relief and serve as something of a bridge during this period of Abbie's recovery. We are going to start her on a low oral dose and see if it can help her relax without oversedating her. My threshhold for calling it "oversedation" will be very low, so I'm not sure we're going to be able to get to a high enough dose to really help her, but it's worth a try.

As I'd suspected, our neuro had very limited experience with the Baclofen pump, and wasn't all that impressed with it. Given the discussions I've had with other families and the research I've done, however, I don't think I'm going to settle for a "no" until we've at least done an intrathecal trial. She is putting calls in to other physicians so we'll see where that goes.

We've been working quite a bit with Abbie's reading program lately, so we've shelved the old flashcards -- the ones that she learned quite quickly this time around. I was curious to see if, after not looking at them for a couple weeks, she would still know the words on the flashcards. She did!

I got an email this morning from an incredible man. He and his family are an inspiration to us on this journey, for they are much farther down the road and to say he has accomplished much would be selling him far short! When you first see Brian you might only think "disabled", but spend any amount of time with him, and some of those letters fade away, until all you can see is "ABLE." He included a video link that recently aired on TV about an important part of his story, and I hope that you will take the time to watch it. http://youtube.com/watch?v=PIxhfdblYts

I was emailing Jordan's grandma the other day about how the recovery from brain injury reminds me of a triathalon. Sometimes our kids are deep in a healing phase, which can be difficult on them and hard on our hearts as well. At other times, they are in a learning phase where they are picking up new concepts and doing new things. This is a favorite time because it's exciting, motivating and full of hope. Then, there's the doing phase. Some would call this plateau, but I like to think of it as concreting the gains made in the learning phase. This is where commitment gets tested as you do the same things every day without seeing much improvement on the outside.

The tricky part is, we want our kids to be doing all three events at once. We want them to be healing while they are learning and concreting their gains. That's like telling the Ironman competitors to ride their bikes during the swim phase using a running motion. I believe our kids are being tested to a degree even we cannot understand, so according to God's promises I believe they will come forth as gold. Therefore, I deem this race the Golden Child Triathalon.

Now, there's another reason the Golden Child is more challenging than the Ironman. There are no clear "event change stations", no definitive times where it's time to let up on the healing and get back to learning, and as spectators this really leaves us guessing most of the time. I can only wonder whether Abbie is swimming, riding the bike, or running most days, and some days it seems like we do a little of each within the day which makes it REALLY confusing! The route and finish line are also never clearly established, so we just have to keep going. Thankfully, we have many race volunteers (you!!) to pray us down the road, and much Living Water to quench the thirst generated by such a demanding race.

I live for the day when Abbie, and each of her fellow racers, receive a victory lei and a medal around their necks and their Golden Child Triathalons are completed.