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!
Happy Kamehameha Day!
My goal for this blog when I began it a year ago was to write every day except weekends and holidays. No one in my family is headed off to school today! In Hawaii, we honor Kamehameha The Great, the monarch who established the kingdom of Hawaii.
So my post will be brief, but I need to ask the question that has popped into every tennis aficionado’s mind since yesterday’s mammoth letdown of a French Open final between Rafael Nadal and Stan Wawrinka.
Given the considerable time difference between Hawaii and Paris, I wasn’t sure how much of the match I would see live. When my daughter joyfully — and loudly — began her day around 5:15, I turned on the TV. I saw the last three points of the match!
For those of us who think Stan the Man has given professional tennis a much needed boost with his playing style and personality, yesterday was a letdown.
Rafael looked reborn as he claimed his 10th French Open in three quick sets and his 15th major title, just three behind Roger Federer against whom he has won nine more matches in their head-to-head rivalry (24 to 13).
Is Rafael the true emerging G.O.A.T. (greatest of all time)? We’ll know better after Wimbledon. Grass courts favor Federer, but if Rafael can continue his golden winning streak into the summer and defeat Roger, like Kamehameha, he will have a great case for G.O.A.T.-dom!
Advocacy, Blogging, Bullying, Evonne Goolagong, Faith, Fate, French Open, Friendship, Growing up gay, Living in Hawaii, Margaret Court, Peace and non-violence, Presidential election, Teaching, Tennis, Women's and men's professional tennis tours
Evonne Goolagong won the French Open the first time she played the tournament, the only player in the Open era ever to achieve this.
Guess what? I once played alongside Evonne in an exhibition doubles match. Truly. If I were on the Mainland, I would find the framed picture I’ve kept (and will keep forever) and include it in this post. Since I moved to Hawaii more than three years ago, though, I have never been back to the Continental United States. Given the current occupants of the White House, I’m in no rush whatsoever to cross the Pacific.
I’ve been thinking a lot about Evonne, not only because of the French Open. Before I played in that doubles match with Evonne against Pam Shriver and a former anchor with CNN, I had the privilege, perhaps even trumping the honor of meeting a Pope, of having a one-hour interview with Evonne for an article I wrote for a tennis publication.
When I overcame my severe fear of flying and visited Iceland for a week, the afterglow lasted 10 days when I returned to the Mainland. After I interviewed Evonne for one hour, the afterglow of her spirit, graciousness, aura, and je ne sais quoi lasted at least that long. I lightened up, a nearly impossible feat. After our interview I wanted to do good things for the world.
Many players on the men’s and women’s professional tours, tennis legends like Martina Navratilova, and tennis fans around the world want Show Court 1 renamed the Evonne Goolagong Arena following the latest inflammatory comments about gays and same-sex marriage by Margaret Court for whom the stadium is currently named.
Is Margaret entitled to her opinion? Sans doute! Does her privilege to exercise free speech carry responsibilities? Sure. If you want to be portrayed as a loving compassionate person of faith, then don’t speak like a bigot. Arthur Ashe and Billie Jean King have a stadium and an entire tennis center named after them. Both fought most of their lives for equality.
Evonne Goolagong will be forever associated for her graciousness and lifelong advocacy of inclusiveness. She is currently traveling across Australia to encourage Indigenous young women and men to stay in school and enroll at tennis camps sponsored by her foundation so they gain confidence as athletes and scholars.
Martina Navratilova has pointed out that sporting venues are named for a person’s “whole body of work… who they are as human beings.”
Margaret Court’s cruel ranting for decades against LGBTQI people isn’t free speech. It’s hateful speech that promotes bullying endured every day by women and men of all ages. Read my blog post, Margaret, about my being called a fag last week and getting hit with a Big Mac. I could laugh about it this time around. Decades ago, when it happened the first time, I sought answers no teenager should have to ask: why do people hate me? Only through love, tenacity, luck and finding caring communities do I know now that hatred is not about me — it’s about those who throw Big Macs and shout loathsome words and much, much worse. It’s about people like Margaret Court preaching from a very privileged perch.
Preach all you want, Margaret. If the stadium remains named in your honor, though, I hope it will remain empty.
Given the decision by Trump and his close advisors to ignore what is staring everyone in the face — our climate is changing so fast that Antarctica will soon be green and a major tourist destination — life makes sense to me at times like this when I stop trying too hard to make sense of it.
After a few conversations with close friends and my husband, I go back to what gives me hope: making time to be more active so the world will be a healthy place for my child and all children. I want them to look forward to viewing the world from an oversized pineapple or other vantage points and see trees — palm trees, maple trees, birch trees, any trees will do — clear, blue skies, and water they can drink safely and swim in.
One of my close friends told me after the presidential election that now more than ever people need to become more resilient to decisions imposed upon us by the new occupants of the White House. This resilience can take the form of art, poetry, other forms of writing, community activism, taking on leadership roles in faith groups — in general taking on a more active role rather than passively despair.
And still enjoy and appreciate life! And keep disappointment in perspective but taking delight in what we have: the joy and innocence of children and the possibility of making the future better for them.
What an intense 11 months since this blog began! Even in Hawaii, where the weather does not change a great deal ever, though, the pace has changed and it’s starting to really feel like summer.
For our daughter, that will mean learning math, hula, Hawaiian language and culture, exploring the island with her parents, and enjoying her new hobby of painting!
For her dads: preparing for the new school year, reading, training for a marathon, and for this blogger, imagining myself in Paris or London by watching the French Open and Wimbledon!
I wish followers of this blog a wonderful holiday weekend. I hope you will be able to devote time to savor something new or familiar, on your own or with your family. See you back on Tuesday!