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.
I have been the mother of a child with severe disabilities, who is now a teenager knocking on the door to adulthood, and I have just recently become overwhelmingly aware of my numbness all of these years. I literally feel as though I have created a fog around myself to survive the journey of a life in which I was chosen to be a primary care provider, forced to end my career and my income and most of my social life. I have spent 17 years juggling between the needs of my active, over-achiever daughter and my son who is the size of a linebacker but has the mental capacity of a toddler, topped off with huge sensory issues that limit his ability to move around freely within our community.
How could my life have been so altered and I didn't respond? How is it that I have not advocated for my son, for my family outside of our immediate needs with doctors, schools, churches, grocery stores, etc.? How could that be? . . . It's the fog. I'm fairly bright, very compassionate and I love both of my children with every fiber of my being. There is no other logical explanation than the fog. Thank goodness for facebook, for Twitter, for technology -- none of which was around when my son was diagnosed. And I would be remiss if I didn't say thank goodness for the shining examples that other Moms much younger than me have provided this past year -- Holly and Melissa, among others, have literally lifted my fog, and I am so grateful.
So, with the fog lifted, the month of February has been consumed with the bigger picture. Together with four other magnificent Moms and Grandmothers, I have helped create the "Kansas Fragile X LINKS Group" to educate and support other families and professionals who are challenged by Fragile X in our state. I have prepared materials for the National Fragile X Awareness Day in Washington, DC, including letters to our Congressman and two Senators requesting that they join and/or champion the Congressional Fragile X Caucus. I provided materials for a delegation traveling to Washington to advocate for Special Olympics. And today I wrote my first letter to the editor of the Kansas City Star to raise awareness and ask that the Kansas legislators find a way to eliminate the waiting list for services for people in Kansas with disabilities. My son is two years into a five-year (at least) waiting list and I've just been quietly waiting his turn...until the fog lifted.
After a month of reaching outside my comfort zone, I feel more alive and more engaged than I have in a very long time. Thank goodness that fog was a temporary impairment to my vision. To other Moms who may have stumbled onto this blog who are in similar foggy states, I say clear the air! Get busy. You have a voice, we have a voice, and we MUST speak for our children who cannot speak for themselves. Thank goodness my fog lifted. I hope yours will too.