I’ve been away from my blog for over a year. The wind was knocked out of my sail last spring and at the same time, I needed to transition Josh from high school to adulthood.
For some reason, I seem to get hints from my universe to take better care of myself -- me, the carrier who cares for the teenager with Fragile X Syndrome. These karma-type things usually happen in threes, and yesterday was no exception.
I am about to discuss my downer day yesterday, so for any Mom’s raising FX kids who are squeamish about hearing despairing things later in life, please exit this blog and move on to a brighter, more positive place in your world.
I have been doing a lot of reflecting on my marriage lately. My husband’s dedication and love for me, his Fragile X carrier wife, and Josh, our son who is severely affected with Fragile X Syndrome and Autism, has been unwavering and simply amazing. Sometimes I get caught up in the day-to-day challenges and lose track of making sure he knows how important he is in my life….not just his paycheck, but HIM and what he adds to this family.
When I started this new blogging adventure in December, I committed to myself that I would write something at least once every month of the year. So here I am on the very last day of February putting my fingers to the keys. It's not that I don't enjoy it; I do. It's that I don't want to write until I have something positive to say, and I want it to always be a relevent journal entry. Since I have found myself plunged into advocacy work this week, I believe that the fog has lifted and I found my relevent topic by default.
Before, during and after the holidays, I watch others around me rushing around to get things done -- find the perfect gifts, decorate the inside and outside of their homes and offices, plan menus, attend parties, mail Christmas cards, stand in long lines for pictures with Santa; and the list goes on and on. For our family the holidays have evolved into a beautiful moment of simplicity.
Okay so, the Joshman is verbal (some boys with Fragile X are not, but we worked very hard and paid speech therapists lots of money early on to make it happen). While he can say almost any word in the English language, and some Spanish as well thanks to his girlfriends at the grocery store, he has only about a fifty fifty chance of saying the right thing at the right moment.
In my continuing journey to learn and properly deal with the challenges associated with my son who has Fragile X Syndrome and Autism, I've started reading blogs written by others with similar journeys. One thing I noticed immediately, the most active bloggers are the ones with younger children. Josh is 16 (almost 17) and he is quite the BIG dude. I'm hoping to start a new trend and talk about our life with "The X Factor After Little Becomes Big."