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Recently, I flew from Massachusetts to Texas with my son. He was one of 30 children taking part in a clinical trial at the University of Texas. This is a pretty cutting edge study in the US for kids with cerebral palsy, and he was “lucky” enough to be chosen. Deciding to take part in the study was not clear-cut for us, and we spent a number of weeks mulling over the decision to hand our child over to science to essentially become a lab rat. What follows are our thoughts related to the choice we ultimately made to participate in the study. If you ever find yourself in this position with your own child, it may be helpful to hear our thoughts.
When I received the call that my son was accepted to this study, I was shocked. When I hung up the phone there were instant tears, and they were not tears of joy. I was terrified. What was I thinking!? Do we really want to do this? Is this the right choice? What should we do?
Of course, I immediately called my husband. He was much more poised than I, but still uncertain. Obviously, this decision was difficult. We have taken our son to numerous alternative therapies and tried everything we felt could help him, with varying degrees of success. We felt our time and money had not been wasted even for small gains. Little achievements are just as good as big ones, and we felt it was all part of our journey. Without investing in one thing, we would not have gotten to the next. Through it all we met amazing people, and learned that our bright, smiley guy is an extremely hard worker and delights in whatever he is doing.
Part of the decision was us rationalizing to ourselves what we wanted for our son, and our motivations for trying new things. The other part was dissecting the multitude of questions swimming in our heads: Are we trying to “fix” him? Are we on an endless quest to “cure” his afflictions? Would he want to do this if he could make the choice?
Our conclusion was that we are not trying to fix him, only to make life easier for him. In the beginning, before we knew much, we were trying to overcome his obstacles and get him over the developmental “hump”, but it didn’t take long before our perspective was altered. What were initially frantic attempts to change his fate, became an acceptance of our son and what he brought to the world. Effort did not equal outcome in our situation. We are no longer frantic, but we still keep plugging along trying to find ways to make his world more manageable.
If my son never developed one milestone past where he is now, we would be fine with that. He is a lovely, happy child who touches so many hearts. But for him, living in a body that WILL NOT cooperate is difficult. Imagine that every time you tried to use your hand to pick up a simple object your arms were yanked back so you couldn’t get to it, or you reached the object only to knock it away. It is unrelenting. We are looking for him to find some relief.
Currently, my son cannot take care of himself in any capacity. He can make choices and communicate to a certain extent, but he cannot tell me if someone hurt him or advocate for himself. He cannot use his hands well enough to use a device to communicate. With time, these things will improve, but to what extent we do not know. We need to make every effort to give him any type of independence, even if it is to be able to isolate movement in one finger to be able to tap a keyboard.
We also sought out other individuals who had done treatments similar to this outside of the US; and found that to be one of the most helpful parts in making our decision. They helped put into perspective what this could mean for our son and others who follow. If we passed up the opportunity, there were numerous children waiting in line to take our place. This was comforting to me.
In the end, while we really don’t know what outcomes may be seen, the possibilities of this opportunity for my son, and others with CP, are very promising. To be a part of that is an honor.