Advocacy, Alberto Costa, Blogging, Down syndrome, Early Education, Education, Faith, Family, Fate, German language, Gratitude, Iowa, Living in Hawaii, Marathon training and running, Peace and non-violence, Pediatrics, Philanthropy, Quakerism, Trisomy 21
My posts have an Iowa theme this week.
Before my family and I moved to Hawaii three years ago, we had returned to the United States after living in Germany with our baby daughter. We were looking for a permanent home, a safe haven for two dads with their first child. Having lived in community before, an opportunity to work for and reside at a Quaker boarding school and farm in Iowa with gentle rolling hills and gentle, intelligent Quakers seemed to me like just the right ticket to make it back to America.
And even given those circumstances, a ticket to a world full of unknowns.
What would my new job, a new state where none of us had lived before, new pediatricians, new neighbors and community be like? Ben and I would be coming back into the American language and customs and traditions after living pretty much like most native German speakers would during our time in Europe.
We switched languages although I continued (and continue) to speak to our daughter in German. We had started to make inroads in Germany with a promising network of friends, but now we sought connections in the United States.
I’m pretty good at cold writing and calling people. I like reaching out, finding common ground. My husband does, too, but he is more reserved. A Harvard-educated linguist, he devours complex medical texts. We make a good team. I find articles with information I think could be helpful for our daughter, and he reads them after I do and gives me his take. Then we decide if there is a next step.
One of those articles was in The New York Times about a doctor, Alberto Costa, whose life and work changed completely soon after his only child was born 22 years ago.
A physician and neuroscientist, Dr. Costa’s joy that my husband and I met 15 years later when our own daughter came into the world was accompanied by the realization that the marathon of parenthood had suddenly turned into an ultramarathon.
Facing the knowledge that his baby girl had been born with three copies of all or most of the genes on the 21st chromosome, instead of the usual two, Dr. Costa entered a brave new world of disbelief mixed in perhaps with a little grief and urgency.
Dr. Costa’s dreams for his daughter Tyche, like ours for Ellen, now rested on a marathon course filled will all kinds of potential detours and questions. Would their future hold limitless potential? Would they be able to freely and boldly pursue careers, meaningful relationships, compete with other girls their age, navigate social pressures, deal with conflicting messages about how they should act and who they should be? What about their confidence? What about their vulnerability?
I only know that the first time I held my daughter, those questions remained but I felt a new calling: to be my daughter’s advocate, to help her acquire every tool possible for her life toolkit, to go outside my comfort zones at times if she were able to benefit from my doing so.
Reading the Times article about Dr. Costa and Tyche on a cold morning in Iowa, about his decision that after Tyche’s birth he would devote himself to the study of Down syndrome, I realized I needed to see if he were interested in a friendship with our family.
I found an email address for him and sent him a few words about Ellen and her picture. I mentioned that like his daughter, Ellen would be described as “high functioning,” although, truth be told, I much prefer “high achieving.” Why? I don’t always think of myself as high functioning! But I always hope to achieve a little something each day!
I thanked Dr. Costa for his research and offered my modest support for his goals to improving the quality of life of persons with an extra chromosome.
He wrote back! He described his hope that children of our daughters’ generations would gain from his research.
Time passes. My family moved to Hawaii. A few years after we had settled into life here, I began this blog. I wrote Dr. Costa again.
Here is part of his return message:
It is good to hear from you after such a long time.
We have made significant progress … and have learned quite a bit more about the specifics of the biology behind some of the cognitive and other brain issues in persons with DS.
Dr. Costa is raising funds for his research at Case Western Reserve University. Here is the link to his profile and work. I know he may well make the path my daughter follows in her life a little or a lot smoother.
Ben and I feel blessed for all the people we have met since Ellen was born who have gone out of their way to help clear her path, to give her a chance at having equal footing in the marathons she will face.
They sure don’t have to, but we will be forever grateful for the time and love they have given our family.