I recently read Butterflies and Second Chances, a memoir written by Annette Hines. Annette wears many hats (wife, daughter, lawyer), but she writes this memoir as a mother of a child with a disability. In a way, this is also a memoir for her daughter Elizabeth. As I read Annette’s book, I was drafting my own memoir, and I could not help but notice how many parallels there are between her story and mine. This holds true even though we had different roles in our families (she is a parent; I am a sibling), and we were separated by many years and miles in between.
Even though I noted some differences in stories, what stood out the most was the incredible similarities. Annette evolved from being an “outsider” with little knowledge of what it meant to be part of the community of parents, family members, and people with disabilities, to being on the “inside.” She narrates with so much emotional depth how she became an insider after her daughter Elizabeth was born and medical issues began to surface.
Much like Annette, I evolved too, although my own evolution came much earlier in my life, as my brother was born when I was 7 years old. I also became an insider little by little, learning more and more through the years, and adding my voice to the fight for equality when I became an adult. Just like Annette, I remember the constant looking for answers. My parents always had questions that mostly remained unanswered.
And much like Annette’s second daughter, Caroline, I felt like I was the “do-over” kid, even though I was born first. In my case, I felt the pressure to be the “perfect daughter” all by myself, and I made sure that I would not give my parents the smallest headache. I assumed that they needed a perfect daughter, an overachiever, a workaholic. My long periods of perfection were accompanied by some periods of rebellion, which in retrospect were just a cry for help and my own way to show human needs.
Annette and I are also remarkably similar in our choice of loving partners. We both married men who have supported us and provided the scaffold we needed in times of need. In her memoir, Annette recounts how her husband stuck with her through thick and very, very thin. I recently heard her say that she would “walk through fire” for her husband. I remember thinking right at that moment that I would do the same for mine.
Annette’s career revolves around service to people with disabilities and their loved ones. It did not start this way, but naturally, over the course of her life, service to the community became her profession as well as her life. My own career and life are sometimes indistinguishable from each other. I cannot divorce one from the other. I have worked so hard to be an advocate that I can honestly say that my friends and family are advocates too, and many of them have chosen a profession of service to this community as a career.
Becoming part of the special needs community is a process, and no one is ever “done” learning better ways to be a full participant in this community. In my own practice, I refer to the community as a big family, one that is constantly growing and extending its arms around the world so that we can all earn the respect that we deserve and claim our place in the world. Annette’s focus is on building an ever-growing circle of friends, families, professionals, and caregivers, so that nobody ever feels that they must go it alone.
The parallels in our lives are so real and profound.
Thanks Annette, for allowing us into your life. You made it easier for me to tell mine.