bright future

stx-209 is officially a part of my life.  No, I am not the owner of a bright shiny expensive foreign car. Stx-209 is a little white pill that is gone in an instant as soon as my son put its on his tongue, but hold so many hopes and dreams in its shape and design.

Many in the Fragile X community will immediately know and understand the importance of it.  I am not quiet or ashamed of our FX label and many people at my work and anyone who knows me, knows its a part of my life, it makes me who I am, its in my genes! But to the many that dont live it everyday, its difficult to explain how much hope I have in this tiny white pill that I have agreed to let my son be the guniea pig for.  The pill is not yet FDA approved, but is in the third phase so its getting further and further along in the testing phase and we are happy to help.

I worked 7am to 4 on Wednesday, hurried home, grabbed my clothes and my son and my dad and hit the road driving roughly 320 miles to the west to just SEE if we even had a chance to take this drug.  I cant describe the feeling I had when I gave my son the first pill.  Now, we dont know if he is even getting any dosage or how much or anything, its just a chance but its one I am willing to take. My mind flashes to those pictures of his future that I saw disappear in front of my eyes the day we got our diagnosis.  I dont want to get our hopes up yet.  I am a half empty glass kind of girl

Am I scared? You bet.  Do I feel a little bit of guilt over what he has to go through to even get tested? Absolutely! But show me any mother who doesnt have guilt where her children are concerned.

So far, we (and I use that term because I truly believe he and I are in this together) have had 3 doses of this “magical” pill.  Do I see changes? Too soon to tell but I am on the edge of my seat to find out.  I truly hope that all of this that I am putting him through, that one day he will understand why I am doing it.  Some of my reasons may be selfish but I think any deed that we do for others is always selfish in some sense because we are doing it to make ourselves feel good.

So my hopes are that by subjecting him to this test, we not only make his life easier but others as well.

His future is so bright, I may have to wear shades!

 

 

 

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