Well Hayden is officially as of today in the STX-209 trial. Nope this is not an audition for a new robot on star wars. This is the drug study for Fragile X. Hayden has entered phase one as of 2pm this afternoon. He is enrolled in a double blind study. Meaning he could get the actual medication or he could get a placebo. But here is the really SUPER part after 8 weeks in the trial he will be guaranteed the real medication. Even if he didn't get it during the trial. So I shall wait patiently for 8 weeks. I just laughed as I typed that. As we were walking out of the doctor's office Mike says to me. "Now don't get your hopes up and let's not look for things that are not there". Um okay honey cause you know that's just how I am. Yeah right...I will analyze everything my little man does to see if anything is improving, changing or developing. Yep that's how I roll. Not even gonna pretend.
So we are holding on to this crazy HOPE that this will be the miracle that helps Hayden. Is it wrong of me to say this...maybe. Does it make me a bad mommy? Maybe to some people. Walk in my shoe's. Spend a day in my life...the unknown...the future. The agony of not knowing what his life will hold. Do I dwell on this...nope. I CAN"T, I WON'T. I've learned it helps nobody. Not Hayden, not my family, not my friends and especially not me. I refuse to do it (well not for very long anyway). It's taken a lot of practice but I have learned how to embrace the here and now. I again with much practice have learned how to snap myself out of a down word spiral of things I can't control. I can't control the future. I can try to shape it by making sure he has what he needs to help him succeed to the best of his ability. With great schools and therapy. I can help shape it by being his mommy, therapist, teacher, friend and did I say mommy?
So as our family heads off into this new adventure. Wait patiently with me...blah, blah, blah. Hope with me that Hayden is on the actual medication!! Yep I said it and I am not taking it back. Hope with me that this will help give back some of what the lack of protein has taken from him. Say a prayer that this IS what we so hope it will be. Say a prayer for all of the other families that are holding on to hope along with us that this medication is what we all hope it will be for our little ones.
Thursday, December 1, 2011
There are few words put together that strike horror in my mind like the words road and trip. I hate everything about road trips. I cannot understand how anybody would want to spend 20 hours in a car when you can spend 3 on a plane. I do not understand the thrill of hitting the open road and then peeing on the side of it. However, I married a man who LOVES road trips. So being the good wife that I am when he suggested we take a road trip to Nevada to see family, I came up with every possible excuse on why we shouldn't do a road trip. Not because I didn't want to see our family only because I hate road trips. Mike being the guy he is had a logical response for every excuse I had. What else can I say when he maps out our entire trip and has that kid on Christmas morning look in his eyes. Of course all you have to say is hotel to Hayden and he is game. The boy LOVES hotels. Oh crap two against one "Ok lets take a road trip"..... For weeks I've been praying that God would help me keep an open mind and help me to not get lets just say crabby like I always do when I'm in a car too long. I also prayed that I would stay awake longer than an hour so I could "enjoy" this one on one time with Mike, Hayden and Hayden's Ipad. So on Friday morning after sending Aaron (that's was our cupcakes name) off and trying so hard to hold it together for Hayden. I thought it would be best that Hayden see him go and not just come home and him be gone. At the time I had no idea if that was the right thing to do. Now I know it absolutely was the right decision. We packed the car and hit the open road with a ton of things to discuss and ponder. I spent the first hour lost in my own thoughts and trying so hard not to break down. Praying again that I would snap out it so that I could enjoy the blessing in front of me. Let's be honest the state of Texas has some boring landscape so I didn't miss much. Cow or look another cow....oh wow a whole bunch of cows....oh hey look at the cows with the big horns. Ok I promise no more bashing Texas. I really do think the cow's with the big horns are really cool and yes I know they are called longhorns.
Since most of you follow us on FB I will spare you most of our road trip details and just give you the highlights. I stopped at three cupcake shops. One was really bad but the other two were pretty good. Now I'm itching to bake some cupcakes. Nothing is better than homemade and I make some wickedly good cupcakes if I do say so myself. Mike hit 3 DDD locations. All of which were really good. Man we love food. Hayden stayed in 3 hotel rooms (well we all did). My favorite part of our entire road trip "the driving part" was seeing the Grand Canyon and sharing that with Hayden. Mike and I have been before but it still and probably always will take my breath away. God in all his glory. You just can't help but be struck by it. My least favorite part of the road trip would be Hayden having to go number two on a stretch of road with no rest stop. This would be where the story gets gross. As long as I live I hope to never hear the phrases while standing on the side of the road with a half naked child "How are we gonna do this? Never mind, he started already" or "He's pooping in his shoe" or "Tina you just stepped in it" ever again. Sorry for that disgusting turn but this is real life people.
I always love when we can spend time with family. I think living away from your family really makes you appreciate them all the more. It makes the time you do get to spend with them even more special and I cherish it so much more than I used to. We had a packed house. Seven adults and four kids. It was the fun and chaos that every holiday should be! We had a great time catching up and hanging out with everyone. We even managed to get professional family photo's done. Mike and I had a date night. That doesn't happen much and we appreciate that so much more when it does. It was a vacation of great times and great food.
I almost forgot we went to Las Vegas Motor Speedway one day. Walked on the track (we were not supposed to) ooops. Hayden LOVED it!!! I didn't even have to ask him to smile for pictures. From the moment he realized where we were the smile never left his face. Now the goal is to get him to a race in a suite so that the noise is not to loud for him. He wanted framed art work of the tracks. He really wanted Kentucky for some reason. I think he just liked saying it. We got him Las Vegas for obvious reasons.
I know for many families like ours with kids who have disabilities, family vacations are very stressful. Some families are not even able to take a vacation because it's just to much stress for their little ones. The amount of preparation and thought that has to go into a vacation is probably double what a typical family has to prepare for. Then you have to deal with the stares from people that just don't get it. The looks in the gas station when your child is touching everything and the comments from a crabby cashier who doesn't get it. No my child is not a brat he is really hyper aroused right now. Which is what I am going to get on your face if you say one more thing. Then the looks of pity when you say "my child has special needs". Really I don't need your pity...I'm really sorry you don't have an open mind and acceptance for ANY child in your heart. With all the extra work and headache I would not give up our family vacations for anything!! The bonding that takes place is just too priceless to give up. I am blessed to have a little guy that loves the car or a plane and doesn't mind new places or changes in his routine too much. We are blessed with a family that is accepting and loves Hayden with all of their hearts no matter what. I know a lot of families that don't have that and I can't even imagine what that would be like to add that stress too. Do I want to take a road trip anytime soon...nope! I do have to say this one was very fun and would have missed a lot of memories we made on road. So I am glad Mike pushed me out of my comfort zone.
I hope you all had a wonderful Thanksgiving as full of family and memories as mine was.