By Cynthia Haddad
For my brother Ron, it has always been about his birthday. Every summer of my adult life, the phone calls would begin with “Are you getting ready for my birthday?”. It would be Ron calling, giddy with excitement, wanting to talk about the plans for his upcoming birthday. The thing is, his birthday is on January 6th.
After telling him how excited I am about plans for his birthday, I remind him that it is my birthday coming up next in August, and then my children in November and then our brother Steve’s is in December, and THEN it will be his birthday, 6 days after the New Year.
Ron has always been, and will always be, “the special one” in our family. This past January was his 60th birthday and we had a big party to celebrate this milestone. It was a surprise party and Ron had a great, great time – especially after he recovered from the shock of it all!
Being with him on his 60th birthday, immersed in the warmth of family and friends and seeing the extraordinary love my parents have for Ron, I am overwhelmed with gratitude.
While they are getting up there in age, their joy and focus on Ron, even after celebrating 60 birthdays together, is so fresh and true; Ron will never grow old in their eyes.
Celebrating Ron’s 60th was also a time for me to reflect back on my parent’s love and devotion to Ron since we were young; a time when there were no entitlements for children with disabilities.
After being told her son was “not educable”, my Mom, as one from a generation of pioneering parents, advocated for her son’s education even though there was no basis for her to do so. She was empowered because she believed in Ron and she knew what he had inside of him.
In 1972, Massachusetts passed landmark legislation, known as Chapter 766, guaranteeing all children the right to a free and appropriate public education. Without this law, coupled with my mother’s advocacy efforts, Ron would have never achieved so much, including:
- Being one of the first people with special needs to graduate from Minute Man Tech.
- Representing Massachusetts in the International Special Olympics.
- Having been gainfully employed after high school throughout his life.
- Living outside the family home, and so much more.
Ron is now a viable part of our society; he works, has friends, goes on trips, lives in an apartment with supports, and is a fully participating member of our family.
We cannot even imagine what it was like for parents of children Ron’s age and older with special needs. At that time, the state’s view was that children with disabilities should be kept in an institution. Parents were told their child would most likely never work or be a part of the community, and other negative stories of a very difficult life ahead. My mother knew parents who literally had their daughter living in a closet in order to protect her from being removed from their family and sent to an institution.
We’ve come a long way. Thanks to the pioneering parents and to the countless parents and advocates who still passionately fight for children to receive needed supports and believe they should be allowed an opportunity to live a full and a meaningful life in the community.
My parents are my heroes. The power of their love for Ron is beyond what I can describe; they have put everything aside to care for and champion him his entire life. As devoted as I am to Ron, I must admit that I do not have the same degree of love for him that my parents do. He is my brother and I am not expected to; I have my husband and children to focus on.
How do I care for him through the ups, downs and every days without losing myself in the middle? How do I honor my parents and pass that intense love forward from generation to generation?
I have found my answer in knowing my limits, what my capacity is and when I need to ask for help from my brothers, my cousins, my friends, my colleagues, and professionals. I know we can never replace our parents’ love but we can surround Ron with a network of family, friends, staff and community who care.
Ron is not just “the special one”, he is the very much loved one by many!
I just came from seeing my brother, Ron, and he is very excited… about turning 61 next January!