Personal Advocacy Reflection

I like to think my family is pretty spectacular. Don't we all?

Well, when I sit down and piece together each gem in our family history, I have no reason NOT to believe my family truly IS spectacular... In the mid 1950's, my maternal grandmother gave birth to her first, health baby boy. (She had several failed pregnancies before, including a live birth of a baby with severe tissue deformities, eventually resulting in the baby's death.) She had prayed and prayed for this day to come, and there it was! Michael was born. A little over a year and a half later, Grammie had noticed Michael had a fever that he just could not break. Having taken him to the doctor, and being told it was nothing to worry about, she vigilantly watched as her once healthy baby boy suffered. After taking him back to the doctor and insisting something be done, it was found that my uncle Michael had contracted meningitis. The late diagnosis, and prolonged fever had left my uncle severely brain damaged and deaf. Although this was a huge cross to bear, Michael was still young enough to manage and my grandparents did not believe this road-bump was large enough to deter them from growing their family. Grammie and PopPop continued on to having 5 more children (all of whom turned out perfectly healthy).

My mother is the second oldest in her family. That means she was the first born after Michael's tragic diagnosis. From a very young age, my mother learned (often the hard way) how to put someone else's needs before her own, and to look at such situations with a lens of empathy and forgiveness. As a young girl, she watched her two parents seek every outside support possible for her older brother, all while he ripped the heads off of her dolls and dismantled every toy she ever laid eyes on. Michael was not an easily child to be around. He was often times violent, seemed constantly frustrated with a lack of communication, and love to wander off. My mom, though, never thought less of him. He was her family, and she was responsible for being her parents first line of defense. She would do whatever she could to support those around her.

As my mother beared the brunt of a challenging older sibling, my grandparents began to set up meetings for families affected by disabilities. In the early 70s, my grandparents became hosts to the very first parent support group in the county in NJ. They began to speak out for the rights of people with disabilities, and worked to empower the families around them that were going through similar experiences.

After my grandfather passed away, and my grandmother began to deteriorate in her old age, my mother began to take on more and more of the responsibilities as Uncle Michael's caregiver. She managed the relationships with the caregivers in his group home. She made sure that all of his medical needs were properly being taken care of, and that the family was called together at least once a year to go and visit with him.

It wasn't surprising to me that when I was beginning my undergraduate studies, my mother had gone back to school to pursue a masters in social work. She has, for my entire life, been an incredible role model of selfless adoration for mankind. I have watched as my uncle's care ebbs and flows within the constraints of a state-funded care system, but how quickly his quality of life can increase through one carefully drafted email speaking out on behalf of his unalienable rights. One of my biggest hopes for my own career is that I will be able to speak out on behalf of those, much like my Uncle Michael, with the same amount of grace, empathy, and compassion as my mother has shown our family her entire existence.