And So It Begins . . .

Picture it:  L. October, 2012.  Birthday party of a friend. Lots of people. Lots of noise.  People she knows. People she doesn't.  10 mg of STX-209 in her system twice a day.  Here she is swinging at the piñata anticipating the goodies that will come pouring out once it's broken.  (Look at her stance. You just KNOW she's gonna knock the schnockers out of it!)

 

Picture it:  L. June, 2013.  School party with her classmates.  Lots of people. Lots of noise.  People she knows.  0 mg of STX-209 in her system.  Notice the lack of picture below of her swinging at the piñata?  That's because she didn't. Not today.

All she talked about all week was the "pick-a-nic" at the park on Friday!  She was so excited. 

I was already sitting in the pick-up line at the school when L's class was walking back from the park, ready to end their last day of school.  I knew things didn't go well when I saw her walking, holding her teacher's hand with headphones on her ears.  <sigh>  I wonder what triggered her . . .

She goes through the school, gets her backpack, and I wait.  Her aide came to my car and said L was in the nurse's office because she melted down after a mosquito bit her.  They could not calm her down while at the park until they promised her she could go to the nurse when they got back to school.  So, I waited.

L finally comes out of the school, still holding teacher's hand, still wearing the headphones.  I was informed that the park trip was not successful, but she made it through.  I asked L how today was and she said, "fine".  I asked if she hit the piñata and she said, "all the kids wanted to". 

I said, "I know. Did you get to?" 
L: "no". 
Me: "why not? Too many kids? Did it break before it was your turn?" 
L: "NO!  I COULDN'T DO IT!!!!!" 

My heart dropped.  My baby girl was so upset that she couldn't do it.  I could picture it in my head:  it's her turn.  She steps up to take the stick and her body freezes.  Everyone's encouraging her.  She throws herself on the ground and says, "I can't!"  Then, she starts grunting, hitting herself, possibly biting herself because she really WANTS to do it, but she can not make her body do what her will wants.  I see her teacher picking her up off the ground, walking away from everybody, and wiping her tears.  I can picture L's breathing getting slower as her body starts to relax again and the anxiety attack fades.  I see her finally walking back to the piñata and slowly pick up a few pieces of candy from the ground, because that's all that's left by the time she's able to move again.

I had to fight back tears on the drive home.  It made me remember last night when she was getting ready for bed. She took the rubber-band out of her hair and it fell. She couldn't find it and became upset.  I was in the kitchen not watching too much what was going on, but her daddy was trying to console her, let her know it would be okay.  I walk by them to head to another room when I saw it.  L hit her daddy in the face.  It was a hit of frustration, agitation.  I know she didn't know what she was doing or why she was doing it, but seeing her hit him shook me.  I have not seen that kind of action from my baby girl before. 

I know there are some who feel fighting the drug companies is not the way to go.  I know that the trial drug did not "succeed" in the written goal.  I also know that my child was changed.  It wasn't a placebo affect.  The medicine was genuine and true and gave me the daughter I know L is. 

Now that the medicine is out of her system, MY L is gone.  It's only been 2 weeks since she titrated down.  It's only been 30 hours since she took her last pill.  I've already seen more meltdowns, more fits, more "I can'ts", more hitting, and more biting attempts than I saw in the last year combined. 

I am sad beyond belief, for her, for her sister, for their daddy.  I know it will all be well in the end, but now it's MY turn to grieve.  I haven't truly done so yet because I always knew there would be a way to make things better.  For the time being, however, the struggles will return.  We will once again have to plan for every possible scenario to help prevent meltdowns.  We will once again sit as close to the exits as we can so we can make our quick getaways.  We will once again have to rearrange our lives to make L as comfortable and "safe" as we can. 

And I'm going to have to be okay with that . . . .for now.

Processing ....

Complacency.  It happens to the best of us. We get so comfortable in a situation that we stop trying, stop looking for better ways, stop worrying.  Until ...

Funding.  It's the hot topic of conversation in government lately.  What can be cut?  Where can spending be limited.  How can we afford the luxuries we've all become accustomed to?  Money is always at the back of people's minds.  Money is the root of all evil.

We have become complacent in our search for helping L.  We've become comfortable in believing the money would always be there.  Her doctors would always be there to hand out her medicine and the FDA would come along and approve the new meds she's been on for the last year.  The same medications that have helped her and so many affected by Fragile X Syndrome. 

Never in a million years did we think the rug would be pulled out from under us with five little words, "we don't have the money". 

I have been sitting on the verge of tears, a few of which have escaped my eyes, thinking of the impact this will have on our lives, on so many people's lives.  I'm sad.  I'm scared.  I'm feeling the need to scream and cry and write to people to fix this. 

A year ago, L began a journey in the field of medicine that would improve her life more than I could have hoped.  She became a little girl that wanted to take on the world.  Her verbal skills sky-rocketed.  She started making friends and talking and playing with her classmates.  She started asking questions about things around her, questions that made sense.  A question no longer went unanswered or met with quizzical, empty eyes.  Stories began emerging of successes and attempts at things never imaginable. 

I heard people - family, friends, acquaintances, teachers, aides - raving about the improvements seen in a short amount of time.  I watched as L and her sister became friends who played together, who taught each other things, who helped each other and shared with each other, and read to each other.  Two sisters.  Best friends.

All of this may change, and change dramatically, all because of money.  The production of the medicine that L's been taking is coming to an abrupt halt.  The company doing the trial is discontinuing the project due to funding.  They don't have the resources available anymore. 

In my head, I picture young men going from playful classmates and sons to aggressive children in stuck in men's bodies, hitting and biting the people who are trying to help them the most.  I picture once calm and entertaining classrooms being overwhelmed with meltdowns, yelling, crying and jumping up and down.  I envision parents trying in vain to get their children to sleep, to eat, to get dressed on their own.  When the children are told "I love you", in response I hear . . . silence.

I fear for these families.  I am nervous for my baby girls, one of whom will be thrown back into the world of sensory overload and lack of understanding, one of whom, I'm afraid, will lose the sister she's come to know over the last year.

I'd like to think none of this will happen, that these advances the individuals have made will not regress.  I'd love to envision the funding miraculously materialize and this is all just a big "haha. Oops, sorry for scarin' ya".  But, I won't hold my breath.

I've been complacent too long, and all I've accomplished in this is to get blind-sided.  It's time to act.  While STX209 may not be saved (but we can all hope), raising awareness will get us somewhere and will get us heard.

Get your pens out and start writing.  Ready?

Go!

Here's to 2012

To say that 2012 was a hard year would be an understatement.  To say I'd like to forget it would be wrong.  If I did that, I would have lost all of the lessons learned and would not have grown.  And believe me, there were MANY lessons learned.

The year brought more pain than I could have possibly imagined.  I was betrayed in the worst way by someone I considered a friend.  I was betrayed in the worst way by my best friend.  The sword went in me, deep, and was twisted over and over and over again, up and down and left and right.  It sliced me in ways unfathomable.  It pierced my heart.  It spliced my soul.  It demolished my trust in people.  I am still in the healing process and I'm still wounded. 

However, these hurts taught me lessons.

Lesson one - friends, TRUE friends, are there for you in your deepest, darkest hours.  They will hold your hand and support you, even when they don't support your decisions.  They will hug you and let you cry.  They will hold the phone to their ears while you sit in silence on the other end, not saying a word, just to let you know they're there.  They will wrap their arms around you in church when you break down in uncontrollable sobs.  And they will not judge you during this entire meltdown.  They will help you build yourself back up, ready to face the world with you.  They will love you.

Lesson two - your spouse should be the relationship you nurture the most, not take advantage of.  You never know what others are capable of, but if you have a solid foundation, you can overcome it.  He must be honored, respected, and cherished, always.  He must be shown these things, regularly.  Never take it for granted that he knows.  Show him. Every. Day.  Continue to pursue.  Continue to flirt.  Continue to build upon your relationship.  This is the relationship you must keep strong, because one day (Lord willing), your children will move out, but your spouse will remain.  Make sure you want each other there when you're all alone.

Lesson three - "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways, submit to Him and He will make your paths straight" Proverbs 3:5-6.  I made many decisions this year that I had a hard time making.  The last thing I wanted to do was make this decision or that one.  I am grateful for my upbringing and my faith because before I said yes or no, stay or go, I closed my eyes, and cried out.  I prayed fervently, more than I ever had before. I tried to tell Him "no", and He laughed and said, "Yes".  So, I did as I was told and am forever blessed in doing so.  My year could have turned out so differently, and not for the better, if I had not listened with my heart and done what I heard.  I am eternally thankful.

However, the year was so much more than pain and suffering.  L has made progress in leaps and bounds thanks to her acceptance into the STX-209 study.  She is able to make sense of words and sentences, communicate somewhat effectively the majority of the time, and can enter unfamiliar places without too much prodding.  Her kinder teacher has nothing but praise for her, and she is starting to play with her classmates.  I can honestly smile just thinking about everything she has accomplished this last year.

K, too, has made much progress.  She decided that panties feel better than pull-ups, so she is finally potty-trained!!  It took a while for her to realize that L had a reason for not using the potty; once she finally understood, there was no looking back!  She makes a great "big" sister and is helping teach L.   K is also impressing her daycare teacher - she was the first in her class to be able to spell her name, count to 30, and recognize every letter and number.  It probably helps that she assists me in helping L with her homework.  It's definitely fun seeing her learn so much so quickly.  

Overall, I'd say 2012 was a growing year.  Every one of us has been taught lessons that will stick with us for the rest of our lives.  There are many things I'd never wish to relive and never wish on my worst enemy, but those are the things that taught me the most and forced me to grow.  

Thank you to my friends and family for helping me, guiding me, and letting me cry on your shoulders.  I could not have survived this without you.

Here's hoping 2013 is a less stressful year where healing continues, growth is less painful, and love expands exponentially.