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Four blocks

  • August 16, 2012November 19, 2017

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” →

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That time of year…

  • June 21, 2012November 19, 2017

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…” →

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Imagine

  • May 11, 2012November 19, 2017

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.

Read more “Imagine” →

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Dreams Can Come True

  • March 14, 2012November 19, 2017

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” →

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My Holiday

  • February 29, 2012November 19, 2017

Today is Rare Disease Day. And despite all of the talking, sharing, writing and public speaking I do about my rare disease, HIBM, it is still hard to believe that I actually have one. Read more “My Holiday” →

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Jennifer’s NDF-HADASSAH Speech from the Fundraising Gala for HIBM…

  • February 22, 2012November 19, 2017

Read more “Jennifer’s NDF-HADASSAH Speech from the Fundraising Gala for HIBM Resear…” →

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When the disease is only half the battle.

  • February 11, 2012November 19, 2017

This week was one of those weeks when I was made acutely aware of the fact that most people in the world-or at least, in my world in West Los Angeles- are not disabled. And as such, most people just don’t get what it’s like to not have their body function as it normally “should.”And therefore, they sometimes simply are not able to put themselves in my shoes or worse, not willing to even learn more about what it may be like to try to walk for a day in my shoes. Because I imagine if they were able to do so, then experiences like the one I had this week wouldn’t be so painful.

Read more “When the disease is only half the battle.” →

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