Today I had an appointment with a new orthotist (a person who fits one with AFOs/leg braces). I wanted to find out if there were any newer, better options for me. If perhaps there was a new design that could be just as effective but perhaps somewhat more aesthetically pleasing than my black carbon fiber ones that come up just below my knee. Read more “The Vortex”
People often tell me that I’m an inspiration. Or that I’m brave. When you see me, I am happy, I am positive, I am active and busy. I work hard, I’m grateful, I’m a mom taking care of two energetic young boys. And it’s true, I am all of those things. But brave and inspiring weren’t a choice. My alternative to brave is to give up. My alternative to inspiring is to fall into a dark abyss of anxiety and fear.
Read more “One Day”
Today was my son’s first official full day of kindergarten. A day filled with anticipation, excitement, nervousness and unknowns. And not just for him. If you’ve had the experience of launching a child into the post-preschool world, then you are familiar with the anxiety of a parent who is hoping for the most positive experience for his or her child. But for me, as with most new experiences in my not-so-new-anymore HIBM life, there is another dimension to my anxiety. The sadness. There is a period of mourning that always has to take place with new situations. I have to confront new losses and thereby disrupt the homeostasis that I had previously worked so hard to maintain. I have to be reminded that I only get to feel happy and comfortable in my routine for so long. This wonderful milestone of kindergarten for my son and our family, this “first” for him, is unfortunately at the bottom of a long and growing list of first losses for me. Read more “Four blocks”
For the last few years, birthdays have been a bit tricky for me. As I shared in my very first blog posting one year ago (yes, it’s my blog’s anniversary tomorrow), having a progressively debilitating disease can make any regularly-occuring marker of the passage of time anything but celebratory. What’s there to celebrate about being one year closer to worse? Read more “That time of year…”
I am going to post something a little different tonight.
I have always said that one reason I am able to cope with HIBM in the way that I do, is because I am lucky to be surrounded by such a strong support network- family and friends who are there for me in any way I need them to be.
Tomorrow my baby boy will turn one.
Not only will I celebrate his first year of life tomorrow, but I will also celebrate the first anniversary of a dream come true for me. I will be reminded tomorrow, and probably every birthday of his thereafter, of all that is good in the world. I will be reminded of the fact that if I want something badly enough, and I’m willing to be flexible in how I go about getting it, I can and will find a way to make it happen. His birthday will always be proof that if I listen to my heart, if I trust my inner voice, if I believe in myself and not let others sway me, I won’t go wrong.
Read more “Dreams Can Come True”