One more day, one more pill: thats it.

One more day, one more pill: thats it.  After the pill we give Logan in the morning, I will box up 3 unopened packets and a few open ones and fedex them back to our clinic.  What happens to them after that? I don’t know.  What happens to us after that? I don’t know.  

I still haven’t had the heart to tell Logan that this is it, we are done.  While his communication skills have blossomed, I am just not sure if he is ready.  If I could, what would I say? 

Probably something like this: “I’m sorry.  I’m sorry for that there are no more pills.  I’m sorry you had this new beautiful world opened up to you and for you, and the door might close on it.  All I can ask is please don’t leave me.  I have grown so accustomed to the little character you have become over the past year and the thought that I might lose that is heartbreaking.   The knowledge that you have real friends at school helps ease my anxiety when I drop you off everyday knowing you can’t tell me how your day was when you get off of the bus.  Seeing the relationship between you and your sister blossom warms my heart.  The joy I get from seeing you pick up a toy and play with it, the right way, REALLY play with it, is more than I thought possible.  I will not give up on you.  Fragile X may be in our DNA, but it WILL NOT take you over.   I have always told you I would fight a lion for you and baby, right now this is our lion.  We will pack up those pills and send them back and we will move on.  I will find something else that will help.  You know the cowboys you love to watch so much? Well, this is our frontier.  There are amazing things being researched every day. and they need our help. So, I’m sorry this one didn’t work out the way we wanted (just yet) but maybe there is another one out there that will be better! So until we find it, I just hope that you will continue to grow and blossom.”

 

To read more about our story and more families involved in the STX-209 study, please visit http://www.stx209stories.com.  For more information on Fragile X Syndrome, please visit http://www.fragilex.orgImage

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Eternal pessimist

My husband always accuses me of being the eternal pessimist. Maybe I am but I just prefer to expect the worst and be pleasantly surprised when it turns out better than I expected.

We 4 days away from our last dose of stx-209. FOUR days! When I first got the news about the end of our extension, I was absolutely heartbroken. All I could think of was all the advances Logan had made since being on the drug, all the things we had been able to do, ALL the words. Then my thoughts shifted to all my friends who’s lives had also changed while being on this experimental drug. Did we all put too much trust and too much hope into this drug? Probably. But something that I think gets lost when you have a child that is special needs, is the person, the parent that you so wanted to be. The grief that you suffer when your child is labeled as “different” never really goes away. You deal with it, you move on and you shove it deep down inside of you because you can’t let it consume you. You have a responsibility.

While taking the drug, so many families, us included, had a brief glimpse into the what it was like to be a little more normal. Now, I am not saying by any stretch that by taking this pull, life was just super fantastic. Logan didn’t wake up one day, have no more meltdowns, and walk into the room and say “good morning mom and dad. I would like to go outside and play today”. Oh how I wish it had happened that way, but it didn’t. What it did do, was allow us a few less meltdowns and certainly a few more words. What it also allowed us, is the luxury of getting comfortable. Comfortable with the good news and good reports we were getting from school and camp, comfortable with letting him play with the neighborhood kids without worrying about whether or not they would understand him, or he would take the football game a little to rough.

So upon hearing about the cancellation, I thought we would immediately lose all of that. The interesting thing about this whole experience, okay, there are A LOT of things that are interesting, is that the titration experience is just like all of our Fragile X kids: vastly different. We are all on different time schedules, some started mere days after the announcement and some havent even started yet. Some kids have adapted well with very few bumps in the road, and others, well the stories just continue to break my heart.

But, for us, once again, I expected the worst and have been pleasantly surprised. My husband actually started the titration process without me. At first I was slightly miffed, but I know, and he probably does to, that left to me, I would have waited until the last possible second. We are sending back 3 completely untouched, unopened boxes! We were only on 10mg twice a day. From what I knew, the maximum dosage was 10mg three times day. I briefly thought about upping Logan’s dosage just to see HOW he react. I might never have the chance to know what he would do on a higher dosage. But, we started the titration and there was no going back. But, so far, its been okay. We have had just a few meltdowns that seem to be triggered for no obvious reason but other than that, its been almost, dare I say it, pleasant??!!! Logan seems to be adjusting well, he has been laughing more, interacting more, and even picking up new words. Yesterday, his sister even complained to me that Logan would not be quiet! I wanted to laugh because SHE is the one that is always yakking so for her to complain that Logan is talking too much, is unbelievable. Then, I wanted to cry because for the first time since May 15 I thought we might actually be okay.

Then, it hits me yet again. Still waiting for the proverbial other shoe to drop. I start wondering so is THIS the perfect dose for him? Now, whats going to happen in 4 days when there are no more pills (well sadly we will still have pills but we have to mail them back) Even though we seem to be handling the titration process smoothly, there is still the underlying worry of what will happen when we give him the last pill. So for us, for now, we seem to be status quo. Once again my penchant for expecting the worst has left me pleasantly surprised. I can only hope that in 5 days, I will be able to say the same thing. For now, we just take it one day at a time, prepare for the worst and hope for the best.

To read more about our story and so many others affected by the stx-209 extension cancellation please visit: http://www.stx209stories.com, on facebook, Fragile X and Autism Families For Stx-209.

For more information on Fragile X Syndrome, please visit http://www.fragilex.org.