Today was the first official day of titration off of the stx-209. Today was especially hard for so many reasons. Since we are officially lowering it now, it seems so much more real. Don’t get me wrong. What we felt when we first found out about Seaside cancelling the extension, it was very real. The sinking in my stomach, the aching in my heart, very real. But we were still administering the medication like before, life was going on just like it had for the past year and a half. Until today. Logan was just slightly “off” today. Its difficult to pinpoint whats going on with your non-verbal child because they can only help you so far. You get very talented at distinguishing moans and grunts and just the look they give you. We went along with our morning. He didn’t even give me any static about going to see his neurologist today. While we were standing at the desk, I looked over at him and he just looked different, he looked not like himself. I asked him if he felt okay, and didn’t really get a response so I just shook it off as my paranoia.
We go home and everything is fine and then out of nowhere, he comes into the den and throws everything in his hands down, looks at me, hits himself in the head and forms fists with both of his hands. I ask him what happened because usually its triggered by the drain of the ipod battery, or his tv went off or something but he just got worse when I asked. He turned and stomped off to his bedroom, closing his door. I sit and wait and he comes back out. Instant replay. This little dance goes on for an hour or so with him getting angry with me if I speak to him, and angry if I don’t. Finally, I decide enough and go into his room and he tries to push me away. I just put my arms around him and start rubbing his back and scratching his arm and I can feel all the frustration melt away. We stay like that for about half an hour. I ask him if he wants me to go or stay. He pats the bed so I stay. I stay for awhile, and then when I think he is done, I leave the room because he tells me he is better. All I can think is whether or not the incident was brought on by the fact that his dad has been home on vacation all week, or the fact that school has been out for a week, or one set of his grandparents are out of town for the week, or….is it the lower dose ALREADY having an effect?
A little while, it starts back up again and it hits me. It could very well be the lower dose already taking affect. As I go back into his room, and put my arms around him, all I can do is cry and tell him how sorry I am. I am sorry for giving him this stupid defective gene. I am sorry that he isn’t like most other 9 year old boys. I am sorry that just as he thinks his world is opening up, its going to shut right back down again. In that moment, I was even sorry for ever getting him into the study in the first place.
I know, I know. I didn’t know about Fragile X when I had him. I had no way of knowing that the study drug that would work wonders for us, would be taken away because a large pharmaceutical company decided that it wasn’t worth the investment to help out a smaller company. I know I was just trying to give him a better life. I know that I am STILL trying to do that by helping to fight to keep our extension. I know all that. I also thought to myself that I didn’t see how I could possibly put him through it again, EVER. In that moment right there as I could feel how frustrated my sweet boy was, I just wanted to take it all away. It probably didn’t help that I had to leave for work and couldn’t stay to help him sort it out, to help my husband deal with it, and to help explain it a little more to Victoria.
My husband called me later to tell me that he had calmed down and had even laughed and eaten a good dinner. He also called to tell me the UC Davis had called about another research opportunity. I guess when one door closes, another one opens.
A friend of mine today, said that they should have issued some precription strength tranquilizers for the parents to take along with the titration kits and I believe she was right. This is going to be a long, bumpy road and its only supposed to last 14 days from today. I am not sure how we will surface on the other side of this but I do know we will. I know that we are not alone and I have gotten closer to some pretty incredible ladies over the last couple of weeks that keep reminding me of that.