I am left wondering…

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Ten years ago, I began to fight publicly for disability rights, CMV (cytomegalovirus) awareness, and special needs advocacy as a whole. I established a non-profit charity that had nationwide campaigns across America and supported funding for CMV vaccine research. We networked across the globe in our awareness and advocacy efforts. All the while, I was a single parent to 2 young boys, one of whom (my son Brendan Bjorn) was severely disabled, with fragile, complex, and profound medical care needs. Behind the scenes I fought for my son’s rights to proper medical care, timely and appropriate services and education, against a bureaucratic machine hell bent on running me over any chance it got.

Ten years on, I am still fighting publicly for those same causes. And while the charity I established was dissolved in 2015, I continue to work on public policy and rights campaigns here in Ireland. I am still vocal, involved, and put myself in the public eye in order to facilitate positive reforms. And yes, I am still a single parent to 2 young boys, one of whom grows more needy, more fragile, and more complex in care every year. Behind the scenes I continue to fight for my son’s rights to proper medical care, timely and appropriate services and education, against a bureaucratic machine hell bent on running me over any chance it gets.

If I sound like I am repeating myself, that’s because I am.

Despite the many years of fighting, both publicly and privately, not much has changed. I still fight the good fight, once tirelessly, but now reaching for the white flag to sheepishly raise above my head in resignation. I don’t want to give up the fight – truly I don’t. But how am I supposed to keep fighting for national reforms or international awareness or providing experienced advice to others when most of the time I can no longer muster up the will to fight for myself?

I am left wondering:

  • Why does no one fight for me? Am I not worth it?
  • Who is fighting for Brendan Bjorn, and all he needs, other than me? Is he not worth it?
  • What happened with the once compassionate world that now it no longer will stand in the fighter’s corner in support of a single mother while she once again jumps into the ring? Are others no longer worth it?

 

These are questions I believe we should all think about with compassionate reflection, both inward and outward.

 

 

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