Tuesday, June 4, 2013

This is my life

There have been times in my life when I have been what I call, "fragile x'ed out".  That means our lives have been super-immersed in Fragile X.  I get tired of talking and thinking  about Fragile X, sometimes. Someone in the Fragile X community may say, Kristie Meyer? Who is she?  That's because I am not extremely active in the Fragile X community.  And that is a thing I sometimes have guilt about.  I thank God there are those who are advocating for awareness and funding for Fragile X.  I feel like I should be attending Fragile X Advocacy Day, starting fundraisers for the National Fragile X Foundation, being a Links Leader, etc.

But this is who I am:  a mom of two boys with Fragile X.  I am not a super-mom.  I am just a woman who God has entrusted with two very amazing boys.  I have my own issues with Fragile X as a carrier.   Anxiety and a tendency towards depression--not to mention dealing with Fragile X kids themselves.

We are weaning Drew from Arbaclofen after a surprising notification of the drug trial being discontinued.   Some old behaviors are starting to reemerge.  This stinks.  It hurts my heart to think of it too much.  I am trying to focus on the fact that he is Drew first and foremost.

Someday, I might be able to be a Fragile X advocate, encouraging others as I have often taken advantage of.  I love talking to people who email me.   I enjoy blogging and reading comments.  I am not able or willing at this point in my life to be more.  And I will continue to ride on the coattails of those who are making an actual difference in the world of Fragile X.  To those who are doing ths now, I applaud  and thank you.  To those who can't give more right now, lean on those who can.  And someday, maybe you will be the one lending support.  And maybe eventually  I'll be there with you.


Anonymous said...

I just wanted to say that you ARE contributing to the Fragile X community by writing this blog and by being open about yourself. I appreciate your honesty as I struggle with some of the same things that you do and I find comfort in hearing about it from someone else. Thank you for this blog. I don't believe we are all meant to go to Washington and do all of the awareness stuff. We each have our gifts given by God and we use them accordingly, as you are with this blog:). It is a blessing to me (when I find time to read it).