I can’t believe it has been almost five years since Hayden’s
diagnosis of Fragile X Syndrome. I will
never forget that day. I can replay it
like it was yesterday. Our son was 2 ½
when he got his diagnosis. Like many of
you now, up until that point we had never even heard of Fragile X Syndrome. We had no idea what it meant for our little
boy. Our story starts out like so many
just like us. I just knew something
wasn’t right. He wasn’t meeting
milestones or if he did meet them it was way later than all of my friend’s
babies. He wasn’t babbling or crawling
at a year old. He flapped his hands and
was very hard to sooth in certain situations like crowds and car rides. Most of all there was just this nagging in
the back of mind that said something was not right. Our pediatrician told us not to worry that he
was a boy and he would catch up. I kept
pushing for something to be done.
Finally after almost a year of pushing she referred us to a neurologist. After several tests and a lot of blood work
we had a diagnosis Fragile X Syndrome.
I remember feeling very alone and angry in the beginning. I wondered so many times “why”, why him, why
us, why me? What had we done to deserve
this. I remember feeling so guilty and
still do that I gave him this. That my
little boy would always struggle and it was because of me.
What I would come to learn through our
journey is that Fragile X would make me stronger and prouder than I ever
thought I would be. It would make me a
better mom than I ever thought I could be.
It would make my husband an amazing advocate. It makes me look at the little things as such
a blessing. It makes me never take any
milestone or little accomplishment for granted.
Hayden is such an amazing guy, He turned seven this year and he has
accomplished what some said he may never. He has such a sweet disposition and
anybody who knows him falls in love with him.
He just has a twinkle that draws you in.
Hayden has both cognitive and developmental delays. He cannot write, and has a very hard time telling us what his needs are. There are days that I just don’t know how to
make his day better. Nothing seems to
work and that breaks my heart. It's a
struggle, not everyday, but it is a struggle and I know I am blessed to not
have some of the struggles so many others do.
I don't regret my life, I
don't wish it away, I wouldn't change a thing - because I wouldn't want to not
know Hayden. Sometimes it crosses into
my mind "if I only knew ahead of time".....but what if I did know
ahead of time....Hayden would never have been a part of my life. So many
amazing people I have met would not be part of my life. The person I have
become, the strengths I have developed, the passion in my heart that I have
would not be part of my life.
Today is Fragile X Awareness day. Please take time out of your day to get educated
or educate someone else about Fragile X.
Love,
Tina
