This has been an incredibly busy year so far. One of the highlights so far is celebrating Victoria’s 7th birthday. Geez! When did that happen? Seems like just yesterday, Lance and I were planning on moving to California only to discover that Logan was on his way and then Victoria. Life just seems to happen. There is nothing you can do to stop it or slow it down. All we can really do is our best to enjoy it. I have typed and deleted about six times tonight as my mind is racing after an evening at work. Yet another evening away from my kids. When I have my feeling down moments, I stop and think about how my life got to where it is today. No where near where I planned, certainly not doing what I planned on doing for a living, still working nights and weekends and holidays and yeah, I wish I could have a do-over. I wish that I had gotten into film school and moved to California, maybe I would have been sitting in the audience at the last OSCAR’s and hanging out with celebrities. But then I look around me at the hand-drawn letters and pictures and the wrestling figures lying all over the floor and I realize that every step, every mis-step, lead me to this place right here. No matter what dreams I had in my youth, the ONE constant that never wavered was that I wanted to be a mom. Then, some might ask well if I am wishing, would I wish that fragile x had never entered our life? I don’t even like to answer that question. What parent wouldn’t want their child to have the “perfect” life, the easy life but Logan didn’t get that option and you know what, its okay. Everything happens for a reason. Lying silently, undetected and unsuspected in my DNA, Fragile X was always there, I just didn’t know it. Logan brought it to my attention. Do I wish that he didn’t have to struggle? That he could tell me completely about his day, he could learn everything a second grader is supposed to be learning, that he could go outside and play football with his friends, and talk on the phone with his friends and…even have friends? yep but fragile x is what makes Logan….well, Logan. Its was makes him who he is and who am I to try and wish that away. Fragile x has even been somewhat of a blessing. FX has made me who I am today. Without it, I wouldn’t have met some of the most wonderful people that I know from all across the globe, not just in the fx world but parents of lots of “differently abled kids”. I wouldn’t be an advocate, not just for Logan and FX but for anyone who needs it. I wouldn’t have the Faith in God that I have today, I wouldn’t have the relationship with my parents that I have today. So yea, life hasn’t turned out the way I had planned but you know what, its pretty darn good. I have two beautiful children that I wouldn’t trade for anything in this world, I am married to a wonderful man who is an incredible father to my beautiful children. So even if I never make as a writer, or teacher or any of those other wishes of my childhood, the best one did come true. So, do I wish I could have a do-over? if its all or nothing, then nah, I am pretty good right now.
A few weeks ago, I was so very fortunate to be able to go to Washington, DC. I look forward to the trip every year for a variety of reasons, here are just a few: 1) As a Southern girl, even this harsh winter, I don’t get to experience snow, REAL snow, not the brown yucky stuff that we get here that shuts down the city for a day or two, but the beautiful white powdery stuff that blankets everything. Because we go in March, the timing is usually that it snows a few days before so I get to see some but this year, it snowed the day before we got there and stayed cold so it was my first real experience with snow. It took everything in me not lay down on the grounds of the Capitol and make a snow angel, so I opted for the first thing I thought of, and wrote “FX” in the snow. It came out awesome! 2) The chance to meet with our elected officials and their staff and to be a part of the legislative process is truly an experience every one should have at least once. There is something about being on Capitol Hill and walking those halls that just makes me proud to be an American, not to mention it feeds my inner history nerd to be surrounded by all the history of that beautiful city and to be able to either educate them on Fragile X Associated Disorders and just give them an update on how we are doing, its always such an incredible feeling that is difficult to put into words. 3) Its a chance to see in person some of my incredible Facebook FX Family and get to bond and catch up and sometimes even meet for the first time but we all have something in common, Fragile X was introduced into our lives and we can laugh and console and educate and just “get” each other for 24 or 48 hours.
While we were there, someone just happened to mention something about STX-209. Every once in awhile, when I hear it, my stomach drops and my heart twinges just a little. Then, I stop and realize its March and Logan took his last dose in July of last year…..and we are okay. Really! We are!! Its amazing to me and my head is sometimes spinning with all the changes I have seen in him since coming off of the drug. He has SOOOO many words, sometimes his sister has to tell him to stop talking! Seriously!! I turned on a Winnie The Pooh movie and he named all of the characters as well as funny parts of the movie (honey, pot, books, mess, etc)
He came home with his report card today and his progress report and he actually has objectives on his IEP that he has ACHIEVED…things like counting, using some sight words, and tracing his name. He is much more attentive with his sister and even asks her to play with him. There is so much less frustration because he can communicate so much better lately. On our visit to the neurologist last week, when she walked in the door, he turned to her and said “hi”…she stopped and looked at me and I just smiled.
One piece of advice that I always give to parents of non-verbal children is one that I got a few years back on my very first Advocacy Day. It was my very first encounter into the FX world, I had never met any other family or person affected with FX and I was sitting at a table full of them! I sat across from a couple from Connecticut who were telling stories about their kids and they were talking about how their son was talking. I was so intrigued because at that time, I had no idea what to expect and I just knew that Logan, then aged 5 I think, was completely non-verbal and life was difficult in our house to say the least. I leaned in as close as I could, totally enthralled as they shared stories of their kids. I began to ask questions and I am not sure exactly what I said but I expressed how I wondered if my son would ever talk, ever tell me he loved me or if he was hungry or where it hurt…he looked me square in the eye and told me, “Never give up. He will talk”. I wanted so desperately to believe it. I was also sitting next to another parent who had an older child and I couldn’t tell you at all who this person was or is, but I remember her saying rather negatively that she was still waiting to hear her son talk. I made a decision right then and there to only think positively where Logan was concerned. I couldn’t get bogged down in all the what he can’t or won’t ever do. I had to concentrate on what he could and would do. So, I turned from her and turned back to this other parent and continued to hang on his every word but the ones I remember the most and carry with me always is “NEVER GIVE UP” so I haven’t and I won’t.
And tonight when I cuddle up next to my boy, and he tells me “night night” and “love” without me prompting (yep! THAT happened earlier this week!!), I will smile and thank God for sending me the people He sends with the messages He does, just when I need them the most. Most of all, I will never give up.
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.org
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.
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.
515 days (give or take, so sue me, I suck at math, blame FX) have passed since I posted about how excited we were after just one day on Stx-209. Then, we weren’t even sure what, if anything, Logan was getting but come January, when we began titrating down off the “study” drug, it became quickly evident that he was getting something.
“Titrating” , since May 15, that word has been used at least once a day in my house. I can’t give you the Websters definition, but in layman’s terms it is the process we are using to wean Logan off of Stx-209, for what we can only assume is for good.
Just 515 days ago, I was so full of hope. So much promise I had put into this little white pill. I thought it would change our world, it did. I thought it would open up my sons world to new possibilities, it did. Never did I think it would break my heart, but it did. Even up until May 14, I attributed most of Logan’s new-found successes to Stx-209. Anyone who knew me, could see how much Logan had grown on it. I spoke of it daily, I called the newspaper and bragged about it. It’s hard to say how much was truly just him growing up, or all of the measures we had put into place, or the pill but it was hard to deny something was different. My 10-year-old niece sat on the couch next to Logan one day, holding his hand, and says “He’s different now. He’s just different, he plays with me”. I knew then, I had made the right decision to allow him to participate in a drug study.
Wrong or not, I, like so many other families, had put so much hope, probably too much hope, in that little pill. Never in a million years, did we imagine getting a phone call that said, um, well, we ran out of money, so, no more for you. Thank you, and have a nice day.
I am angry, I am hurt, I am heartbroken not just for me but for all the families that are affected by this. I am hurt for my niece who has this new side of her cousin. I am hurt for his sister, who now plays with her brother. I am hurt for the kids in Logan’s class who are now his friends. I want to scream from the rooftops: it’s already not fair that Logan isn’t like other kids and struggles with so many simple things, to have what we thought, what we hoped, was something that would help make his future a little brighter taken away, just like that.
Just like I did after we got our initial diagnosis, I realized I couldn’t just sit by idly and just let it happen without a fight. Blame it on being born in Missouri, but I need the “why” and I need to fight back. I contact the press, use any connections I can find, to make a stink, tell our story. It may do some good, and it may not but at least I will have tried. At least by not going away quietly, a few more people are aware of Fragile X.
We started our titration (see 3 times here already!) yesterday, and I am scared yet ready to get it over with. Scared to death because I don’t know whats going to happen. Will the meltdowns, the REALLY bad ones, come back? Will we lose those oh so precious words we have gained over the last 500 days? Will his friends notice a different Logan when he goes back to school in the fall? Only the Almighty knows the answer so I have to trust in Him. Some people have asked, and I know other FX families are in the same boat, as to whether or not we will search for another study to participate in. I just don’t know. It’s a HUGE decision to subject your child, your flesh and blood, to be a guinea pig. Did I feel some guilt over it? Absolutely!! I am a huge believer in research and I believe that one day, we will have something that will help Logan and all of our other FX families, have the life they deserve. But, based on my experiences of my past, I have a difficult time putting my trust in someone who has wronged me before. Am I sorry for doing? Nope not at all.
So, I think for now, we will slowly wean off of the stx-209 and see how it goes. But I did have to laugh to myself when I got the mail today only to find a letter about a language study being done that is looking for participants. Our very first venture into the research field was in a language study. So yeah, it is sort of like a new beginning. One that I believe, I have to believe, will have a happier ending. This warrior mama will NOT let Fragile X win this war!
Wow! How does time really go by so fast! My New Years Resolution LAST year was to do more blogging and knew time had gotten away from me, but seriously, a year??!!! Oy vey!
So we have been in the stx-209 world for a little over a year now and its crazy how different it is. Logan is saying more words every day, and my mom even mentioned the other day that you could actually carry on a conversation with him now! He is a little more tolerant of change and the unexpected and much more aware of his social circle and for the first time in his 9 years on this earth, he had a REAL birthday party, at Chuck E Cheese no less! Kids and adults both stop me at school and talk to me about Logan and how sweet he is and how funny he is and how much he likes pigs! He has actually achieved some IEP goals and all the comments say how far he has come.
However, as good as things are, Logan doesn’t get up in the morning and take his pill, suddenly turning into the “typical” child. We STILL have meltdowns, though they are infrequent, he still doesn’t understand “sharing”, especially with his sister and as far as he has come at school, his last report card came home with UNSATISFACTORY in the CORE subjects of Math, Reading, English. I was okay with it because of all the good things his progress report said. But, then this weekend we got a letter from the school saying that he is in danger of not advancing to the next grade. He is already 9 years old and repeated every grade, so while his typically developing peers are in 3/4 grades, he is still in first and they want to hold him back again?? My heart sinks and as strong as I am at times, I feel a sudden panic and all my insecurities come rolling back in like the tides. As the parent of a child with special needs, with a disability, I have had to come to the realization that he will probably not be a surgeon, or a lawyer or president one day but one of the things I have stayed true to is that I want him to have an education. An education is something you earn, something that no one can ever take away from you. But it seems to be one of the things we struggle with.
If only there was a magic pill to fix that!