Delusions of Grandeur


Posted on: January 13, 2012

“Life isn’t a matter of milestones, but of moments” -Rose Kennedy

Every parent celebrates those major milestones when their child takes their first steps, babbles their first words, eats their first mushy bite of oatmeal.  I’ve not yet found a satisfactory description of the feeling of pride and joy that fills your heart when you see that miniature person grasp an activity or concept that is something you probably take for granted every other minute of the day.  As a parent of a child with fragile x I find that not only do I celebrate the big deal milestones, but that frequently things I’ve never even considered milestones or even really thought of at all take on tremendous importance.  Things like communicating a desire or request, the basic building block of communication, become just as big of a deal as walking when they’re things that your child has to work so hard to grasp.

It’s shortly after Elijah’s second birthday and communication is a hurdle we are still figuring our way around.  He’s just recently begun to request things like being picked up (by standing in front of us with his arms raised in that classic childhood pose which is so amazingly cute that you can’t help but feel your heart melt) and he’s also started bringing me his favorite story so I can read it to him.  It’s so amazing to have him doing these that even by the seventh time through Brown Bear Brown Bear I’m still happy to be reading it to him and read it with the exact same amount of enthusiasm as the first time through.

He’s also started babbling with a few more sounds these past few weeks.  I’m trying not to read too much into it as he’s done this in the past and then regressed for months at a time, but there’s always the hope that maybe this time he’ll continue to make gains in communication.  I suppose the overall theme of our days is that there is always hope, but in the meantime, rather than focusing on the milestone, we’re enjoying the moments 🙂


2 Responses to "Milestones…"

Hi, just reading some of your posts. I have two adults sons with Fragile X and remember the times that you are talking about. It brings fondness as well as a sense of exhaustion as I navigated those milestones as a single parent. I have to set up a new blog (loss of password and old email address.) I am well connected to many FX groups on facebook. Find me there if you would like. – Janine

Thank you for your comment Janine. I’m still incredibly overwhelmed by this new world that I somehow landed in and I’m only just now starting to reach out and make connections with other parents. We are moving across the country in a month and a half so it didn’t seem worth it to get to involved where we are now and I’ve honestly been a bit too busy anyhow. Thank you for reaching out and hopefully I’ll see you on one of those groups as I start finding them. 🙂

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