I was never good at advocating for myself. As a child, I blindly accepted, never challenged, and quietly navigated through those years without protesting treatment I did not deserve. Oddly, I became a fierce advocate for others as I grew into adulthood, and it has defined much of who I am today.
Advocacy for me began in the form of a fundraiser, then PTA president, and a member of a council. I stood before a microphone on many occasions with no fear, and spoke my mind at emotionally charged meetings to actively support and debate issues for the schools of my typical children.
After my third child was born with multiple disabilities, my advocacy took a dramatic turn, as I became a parent member of a committee for special education. I advocated for the rights of children in this system while supporting many stunned and terrified parents as a peer who knew all too well what they were feeling. I felt compelled to make sure the district treated these parents well, while I convinced them of the right choices for their precious children. Eventually, my own career path changed as I began to work as a teaching assistant for special education, and taught and encouraged the children in my charge who could not speak for themselves.
As my own child with a disability grew, I found myself in constant situations of needing to question, challenge and ultimately disagree with several doctors and educators over the course of 24 years. As her support system, I will stop at nothing to make sure I am doing everything possible for her health and well-being. There are few boundaries and no such thing as giving up. Sleepless nights, days of phone calls, frustration and tears are a way of life when you are constantly standing up for what is right. Thankfully, there are also days of intense joys, and the satisfaction in knowing I have made a difference in my daughter’s life, not only as her mom, but also as her voice and strength, her gentle push to try things she would otherwise never attempt.
Advocating for our loved ones is truly one of the single most important things we can do. Doctors and educators don’t always have the answers and they can make mistakes. It is critical to always listen to your instincts.
My husband and I have been advocating for our daughter since the day she was born. It has not been easy. Had we listened to the advice of many and not pressed on to find the origin of her declining health, she would not be alive today. We now have a wonderful team of experts who are our heroes, next in line to the hero who is my daughter. It took many years of research, switching specialists, and of striving for the best possible answers that brought us to where we are today. We still have far to go and it is an evolving process, but we will never stop advocating for her. As her parents, it is our responsibility to do so.
How ironic life can be. That timid little girl I once was who could never advocate for herself grew to be someone who finds it so easy and natural to do so for those in need, especially for my beautiful and inspiring daughter.