We’re all a little dressed up for Father’s Day, in our case Fathers’ Day!
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.
Did you know Iowa has its own version of Wimbledon?
Appropriately, it is called the All Iowa Tennis Club: a grass tennis court on a family farm surrounded by a well-tended, short white fence in the middle of fields that stretch evenly as far as the eye can see.
It took 14 months to build after years of hope, research, planning, and perseverance.
The public is invited to make court reservations. Homegrown strawberries are served. A youth tennis league learns the wonders of grass court tennis every year on the court.
For tennis fans young and old, it is truly a field of dreams. I wish I had played at the All Iowa Tennis Club. I had begun to make travel plans with a friend, but out of nowhere a job opportunity came about and my family and I moved to Hawaii.
But I’m always thinking about level playing fields, whether they offer opportunities for folks from all walks of life to enjoy baseball, tennis, safe and sustainable communities, education.
Yesterday I wrote about The Village Community, an amazing living/learning/working center in Iowa begun by parents of children with “disabilities” who dared to dream of a place where everyone is valued for his and her gifts to the world.
If only the new United States Secretary of Education, and more members of the Senate and House of Representatives were truly invested in giving everyone a level playing field and greater access to services whenever possible in integrated settings.
Unfortunately, many people — not just those with “disabilities” — are feeling pretty vulnerable since the national elections last November.
Speaking out about Civil Rights has become more important and necessary than perhaps ever before in our nation’s history.
Since I began this blog a year ago, I have learned what I already knew: telling our stories can make change for the better.
So let’s tell them whenever we can even if it means going out on a limb or out of our comfort zones sometimes. If they are worth telling, they will find resonance and build trust, hopes, community, and yes, fields of dreams.
For my last entry I posted a beautiful painting from my friend Matthew, a view from our last home before we moved to Hawaii. We lived in an intentional Quaker learning community and farm in Iowa.
Our daughter was just a year and a few months old when we moved to Iowa from Germany. Although born with an extra chromosome, she was alert and curious. She took in and responded to songs, poems, and books in English and German her fathers read to her several times a day. She could do everything most babies do!
The shock of our beautiful baby girl coming into this world with an extra chromosome gave another dimension to the steep learning curve of parenting a first child. We knew finding a great community would give our daughter advantages we might not be able to on our own. It was the main reason we left Germany where Ben and I felt at home in the German language, enjoyed many friendships, but also saw that most people would not consider “the sky’s the limit” for Ellen. Unfortunately, most people in Germany were already placing limits on her, and she was just a baby!
Iowa was different. The sky was as wide and bright as farm fields in summer. Ellen had many fans who encouraged us to set the bar high for our daughter. She had wonderful teachers.
One day I received a request at my job for a tour of the intentional learning community. I spoke to an eloquent, kind, funny woman named Mary on the phone before I started asking questions. She paused. Soon, though, we laughed and realized we were speaking the same language. The tour was for a group of parents of children of all ages with disabilities wanting to ensure that their kids would lead meaningful, sustainable lives as they grew older. The parents’ goal was eventually to build a living/learning/working residential community.
I agreed to set up the tour. I asked a colleague named Mark, who manages the farm at the Quaker day and boarding school, to join me. Mark, one of the finest teachers I have ever met anywhere, immediately said yes.
Mark, in fact, pretty much led the tour. It gave me a chance to watch the parents’ faces grow brighter with hope, to listen to their questions, to watch their reactions as they realized that their dream could be achieved.
At the end of the tour, I brought these amazing parents to our home on the school property that was close to the farm. I introduced them to my daughter who at that time was three years old but starting to speak the two languages that are her first (but not last!).
A few minutes later, I showed the parents the Quaker meeting house and we talked a bit. At the time I did not know my family would be moving to Hawaii, and I wanted to become fast friends with this group of people I had just met. I had trusted them immediately so I allowed myself, knowing they had far more experience with parenting than I, to ask what they thought about Ellen.
I think most parents seek reassurance in some way at one time or another (or more) about what matters in life most: the future of their children. For parents of kids with a “disability,” I have learned that we hold our breath a great deal and hope we don’t come across as needy while we seek to be the best advocates possible for our daughters and sons.
In that Quaker meeting house years ago, one of the fathers looked me in the eye and spoke quickly, decisively, and kindly.
“Look, my friend. Your daughter can do so much. She understands and is speaking two languages. She’s alert. She answers our questions. You’ve got a bright girl. She’s going to be fine.”
But one never knows, and every day you try to give your children skills so they can thrive in small and large ways, so they can transcend expectations, so they can learn the rest of their lives.
But it takes a village, and the wonderful people I met in Iowa began one: http://www.thevillagecommunity.org
Before I started writing this post, I revisited my memories and their website. I was stunned to find my name as one of the individuals who supported them. To my mind, I only did my small part.
More than three years ago, my family and I moved to Hawaii. We’ve all found what we were looking for even if we didn’t know it at the time!
My husband: friends, a faith tradition, a devotion to exercise, the Hawaiian language and culture, a great job, and community.
My daughter: friends, first-rate teachers, Buddhism (although she is still a Quaker), community, and the Hawaiian language and culture.
Me: mountains! I grew up with them, I missed them, I’ve met mountains all over the world, and the most magical mountains I’ve ever seen are in Hawaii. Also a great job, community, amazing new friends I feel like I grew up with, a reconnection to writing poetry, starting this blog and keeping it going for a year.
I’m often asked if I ever have “Rock Fever,” a sense of being in the middle of a vast ocean and missing the Mainland. The honest answer: in more than three years, not even for one second!
I’m glad my family sat down together one cold morning years ago in Iowa, weighed pros and cons about moving to a place where we knew no one, hugged each other, and agreed to go for it!
In an ideal world, all our close friends and family would move here! Short of that, we still have pieces of our past with us. I’m cooking a German meal this morning for my daughter’s summer school class. Then I will go to my office where I have this beautiful painting of where we lived in Iowa in an intentional learning community and farm. My artist friend Matthew gave it to me on my last day on the Mainland, and I carried it with me on a train and a boat before I landed in Hawaii. I believe Matthew moved to Japan soon after! Come visit, Matthew. Hawaii is a perfect place to meet in the middle!
I first read Sternstunden der Menschheit (Decisive Moments in History) by the Austrian writer Stefan Zweig as a young man. The collection of miniatures about events that changed the world, such as Robert Scott and his expedition to reach the South Pole, is achingly beautiful and as suspenseful as a novel that must be devoured at once.
I have read the book only in its original German, but I am sure the English translation conveys just as stunningly the fateful decisions made in just one day, or even a few hours or minutes that can change the course of history.
I’ve been thinking about Sternstunden der Menschheit a lot lately for two main reasons. The first is the sad realization, brought home every day, almost every hour, that there is very little heroic about the current occupants of the White House. Just one year ago, I was so optimistic about the United States’ trajectory through history.
The other reason, though, is the courageous efforts of writers, artists, scholars, and even politicians who are rising to the occasion to save democracy in America.
It has happened before in history during times of resistance.
I had the honor of living through the end of the Cold War as a very young man who lived close to the border of east and west Europe as the Iron Curtain first slowly and then with a stunning sense of inevitability fell apart piece by piece.
Those were days filled with true Sternstunden, exhilarating, breathtaking moments that define history and the greatness of humanity!
Call me an optimist, but I believe the world and especially the United States right now have extraordinary potential for many more Sternstunden.
The title of this post could also have been “Learning to Like the Smell of Guacamole.”
My husband and I fell in love in a classic way. We lived in two different cities. I was visiting a friend and we stopped by a shop that offered books in every foreign language imaginable. I saw a guy working at the cash register who I knew in one second was the man of my dreams.
Ben, who speaks 10 languages fluently, was a graduate student at Harvard. I worked up the courage to speak to him. I told him I had an interest in Celtic languages even though I had never really thought of them until I met Ben that first time in the bookstore.
Now, nearly 15 years later, we have lived in two countries, four different states, crossed two major oceans, and have one glorious child. It sounds magical. It still is, but not always. We have also changed jobs, received news our child would be born with an extra chromosome, started life again in new cultures partly because of the extra chromosome, lost family members, and survived the challenges of Ben’s recovering from an out-of-nowhere stroke at age 42.
Real life, is, well, real life. Long ago I lived in a monastery. I loved the simplicity. I had one desk, one chair, one bed, very few clothes, a radio that I played only two hours on a Sunday afternoon, and maybe 20 books. I shared a bathroom with other monks. We ate our meals together. Once a month on a Friday evening we all gathered in the library, prayed, had cake and decided on which television show we would watch that one time for that month.
It’s hard to live that way having a spouse and a young child. At least once a week my husband and I have the The Merits of Accumulating versus Decluttering discussion. He loves to fly. I could live on a boat. He loves guacamole. I do not. He is a voracious reader of science fiction. I like biographies. I turn off lights whenever I can. Ben sighs when the house becomes darker.
The list could go on, but living together as a family is about compromise. And rediscovering pink and white terraces.
I recently read that the eighth natural wonder of the world may have been found again in New Zealand.
Cascading pools of water that flowed over pink and white silica terraces into Lake Rotomahana once awoke excitement, awe, and devotion before they were buried long ago by a volcanic eruption.
How many marriages where everything flows in the beginning of the relationship are lost to inexorable mudslides of the daily grind or inability to tolerate guacamole?
Is it not better to look past the mud and be open to falling in love all over again?
Of course! It may entail losing control, letting go of old dreams but maybe finding new ones, forgiving each other, and remembering gratitude for having someone to share the victories and losses.
And never giving up on finding pink and white terraces.
Yesterday I wrote about my family being featured in a national promotion for diversity and inclusivity. Life is definitely a marathon, but it sure is nice when all the miles invested in training make the vicissitudes of the course a little easier to navigate. If my family’s story can help others along not only in preparing for the unexpected, but also in enjoying the highs and lows of any marathon, then I can pay forward all the times when a little encouragement has gone a long way for me.
I also wrote about tennis legend Margaret Court and her decades-long mission to deny gay men and women the right to marry and have children together. Margaret has ramped up her vitriol considerably during the French Open, currently in its second week. The woman whom Margaret has gone after directly for years, fellow West Australian Casey Dellacqua, has reached the semi-finals of the women’s doubles. Wouldn’t it make a great happy ending if Casey won the tournament with her playing partner Ashleigh Barty? It would be her first Grand Slam victory.
What about you, Dear Readers? Do you believe in happy endings? Would you like to share any on this blog?
If Serena Williams were playing the French Open this year, she and the woman whom she is looking to tie as winner of the most major championships in tennis, Margaret Court, would be the talk of Paris mostly for their achievements on the court.
Serena is enjoying the tournament, but as a spectator this year as she is many months pregnant.
Margaret decided during the tournament to ramp up her decade-long rant against gays and same-sex marriage. A fellow West Australian, Casey Dellacqua, who is still in contention at the French Open, has for years been on the receiving end of Margaret’s tirades. Margaret claims she likes Casey personally but can’t condone Casey’s decision to have a woman as a life partner nor their parenting their two children.
If the world were in a more normal place, Margaret would probably be mostly ignored. Unfortunately, with the new occupants of the White House, all ground gained in the last decades in Civil Rights is no longer guaranteed.
A friend recently asked why I write about this. After all, he said, I have a nice life and my husband and I and our daughter who was born with an extra chromosome have been largely accepted by the communities where we live, work, and play.
My response is that I still get hit with Big Macs (why not a wrapped Double Cheeseburger?!) and people will yell “Fag” at me when I’m walking down the street minding my own business. Even in settings here in Hawaii very familiar to me, I hear comments and questions — not always kind, occasionally laced with disdain — about my style, mannerisms, choices, and sometimes about people of all ages who are figuring out their sexuality and identities.
I’ve learned, more often than not the hard way, not to take it personally. To answer my friend’s question more specifically, as long as I have a voice, actually as long as I can breathe, I’m going to live my life and write and speak so that people like Margaret Court might wake up one day with a willingness to imagine what it’s like to walk in my shoes (or tennis sneakers) even if she never can (nor I in hers).
Change happens. For many years I did what was expected when work colleagues, friends, relatives, and close family members would talk endlessly about dates they had gone on, their children, their marriages, their weekend activities. I was expected to take in all this, be friendly and supportive, but never talk about myself. But every once in a while I would pop in with something like, “You know, I went out on a first date with a guy a friend introduced me to. I think it might have been our only date!”
I would be greeted with snickers or ignored. Once in a while, I would be taken aside and told I had been “offensive.”
Times have changed, slowly, but actually more so than I ever would have imagined. My husband and child are recognized as full-fledged members of my vast family. We are accepted in our work and faith communities where the majority of our friends are straight. I actually don’t define myself as gay or straight. I’ve never been a huge fan of labels.
I’m also happy to share some really good news: I found out yesterday that my family will be featured by a well-known organization for its national promotion of diversity and inclusivity. This is an organization founded well over 150 years ago in part to improve the health and well-being of people in countries throughout the world.
It’s funny, but on my walk home yesterday, after finding out this news, I thought, “For this to happen makes all the Big Macs that have landed on me, the thousand times in my life I’ve been called ‘Fag,’ the bruises from being beaten up, it has made all of that worth it.”
I never have thought of myself as Mr. Advocate. But if I can help anyone move to a place of greater acceptance of differences, then I have my answer for “What’s it all about?”