Out with the old

So hard to believe that another year is gone!  I feel so old saying things like that but this past year has flown by but as I sit back and reflect, I am very happy with where my life has taken me.  What a year its been but my most favorite memory was made tonight, just a little while ago.  For years we have just foregone the fireworks on New Years and Fourth of July both, much to my husband’s dismay.  This year, Victoria showed some interest in fireworks around July so Lance promised her we would get some.  We just figured Logan would stay indoors or I would stay with him.  So we got ready to start and Logan got very excited, jumping around and jabbering all over the place.  A long time ago, we just learned to take things slow where Logan was concernced.  We always at least try and see where it gets us.  Well, I have to say, he certainly surprised us tonight.  He stayed attentive, and watched and participated the whole time.  We did have a small meltdown, but it was because his dad told him we were going to eat dinner then finish the fireworks.  Momma couldnt take it, so I took him back out. It was amazing.  Even the loud ones that made me jump, all he did was cover his ears, then laugh and ask for more.  It made my heart soar to watch my little boy experience true joy. 

We have now been on the drug trial for 3 weeks.  Today is the first day Lance and I both have noticed a big difference.  Its so hard to say whether its the drug or just him growing up. We both noticed today that he appeared more alert and more little boy like, not like a little boy affected by Fragile X.

After the fireworks, 2 of the neighbor kids came over and Logan and Victoria went in the front yard and played.  Logan played! He even played Duck Duck Goose.  He knew how to play and when it was his turn to be it, he put his hand on one of the boys head and said “goose”.

Sometimes, I feel like we are searching so hard and wishing so hard for those “perfect” moments, those “normal” moments in our lives and I realize that they are always right there in front of us. 

One of my 2012 Resolutions is never ever take a single thing, or a single day for granted when it comes to my kids. 

I hope everyone has a Happy New Year and I for one, am looking forward to the New Year and all the promise that it holds.  I am not an optimist by nature, but I could find myself becoming one!

 

 

 

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!