If I were not so exhausted by the weekend, I would elaborate on why every weekend since I became a parent more than seven years ago has been a mixed blessing.
So I will save my ruminations for Wednesday’s post. Suffice it to write that except for 10 seconds, I was proud of my daughter most of an exhausting yet fulfilling weekend that soon will be past. Unfortunately, those 10 seconds came near the end of a lovely Sunday.
I know from thousands of tennis matches and 19 marathons that a good finish really counts. I’ve tried to impart this wisdom, in my imperfect way, to my daughter.
Stay tuned for Wednesday’s post!
I’ve always savored Sundays. I loved going to church and everything that came with it and afterward.
If I were with my grandparents, I would sit with them and near my vast family in what was called the German Church in a small town settled by Bavarians in Pennsylvania. To this day, on a rare visit, I love reading the stained glass windows, all in German.
For quiet people, we certainly had plenty of gentle conversations on Sunday mornings, usually with relatives. Most people in that town were related in some way to each other. To my husband’s astonishment, I know many third and fourth cousins. On the rare times I see my Pennsylvania family, I slip into some form of the local dialect that is English but to this day has subtle Bavarian shadings.
I loved the doughnuts or family meals that were part of those Sundays, buying a big city newspaper, and returning to my grandparents’ home on a wooded hill to read it then or later if cousins, aunts and uncles appeared.
I think of those Sundays when I hear my daughter’s sweet voice in the morning, the excitement in her words about what the day holds — for her two dads and Ellen, usually joining the Buddhists, now and then the Quakers, then mixing with the community, then eating, then a trip in the afternoon to her favorite museum.
The news I gather on Sundays is usually on the Internet or on TV. Today, though, I had to turn it off to preserve some innocence in our home. The reporting may be excellent, but the content drains most of the optimism I wake up with. I want to keep my daughter safe as long as I can, for her to savor Sundays and have those memories with her decades later, to hold onto faith, and to know that the world can still be good and fair.
Yesterday morning at this time I was working with my seven-year-old daughter on her homework assignment for Tuesday: sharing with her classmates and teacher a piece of her culture. The options provided for second graders were fun: a song, for example, clothing, a game.
We chose a book Ellen has loved for years: Kennst du das? Mein buntes Bilderwörterbuch or Do You Know This? My Picture Dictionary.
In the next few days Ellen will practice telling why the book is important to her family and culture. She will present verbally to her classmates the reason she came up with on her own: “So that we continue our heritage and language.”
My daughter has been raised in two languages since she was born: German and English. She is now learning Hawaiian and a bit of Japanese. Her other father, a Harvard-educated linguist, feeds her Basque and Cornish words for fun. We keep it light in our home when we use languages other than English either in speaking, playing games, singing or reading.
For me, German has always been part of my life even though I lived only about six years in German-speaking countries. When I did, friends from those countries who knew I that I had grown up in the United States would either say I was an “honorary European” or that I was American. I would gently correct them and state that I was German-American, even Bavarian-American.
To many of those folks, this seemed incomprehensible. If you grow up in the United States, you love McDonald’s (I actually do have occasional cravings for McDonald’s fries), baseball, American football, violence, and only speak an English many Europeans, as best as they try not to, look down their noses at. You care only about being an American, have no interest in other cultures or languages.
Well, no, actually for many of us!
In my vast family with our German surnames, we pretty much know our family roots from centuries ago — where and how they lived, whom they married, when they came to the “New World.” Many of us grew up with the German language or at least German words that became kind of a family dialect on my mother’s side. A few of us are bilingual.
When my husband and I visited our daughter’s pediatrician when we were living in Germany, she asked what language we spoke to Ellen. Ben said English. Sheepishly, I said, “Well, I prefer to speak German to her.”
“Of course,” Ellen’s pediatrician replied, “That’s your mother tongue.”
Well, that was enough for me to keep my vow going that I had made to my maternal grandfather: that I would always keep the language going in our family.
So when my daughter said to me yesterday that she speaks and reads German because that way our family’s heritage stays alive, a shiver went down my spine in a good way.
She gets it. She lives in a city where you can walk down the street and hear four different languages at any time of day, is part of a faith community that traces its origins to Japan, learns Hawaiian culture, language and dance on Saturdays, and then unwinds at home by reading German!
This is all balm for my soul after reading news articles about a president ensconced in his golf club for the weekend in New Jersey firing off vicious tweets to the mayor of Puerto Rico’s largest city, a woman of non-white heritage, who has been working nonstop to deal with a hurricane that has devastated her island. The reason for his cowardly, disgraceful attacks on her? She had the nerve to question him and his lack of leadership, of understanding.
I want my daughter to continue to embrace other cultures, traditions, languages, to appreciate that if you do, you can go anywhere in this amazing world and find community. How lucky we are to be in a part of the world where that is valued deeply. How lucky we are that our last president grew up in Hawaii. How lucky we would be if only our current president could open his mind and heart just a little.
Yesterday my husband and I met with our daughter’s new teacher and her counselor after school. We reviewed Ellen’s strengths and areas for improvement as a young learner and as a girl finding her way in second grade.
Yes, the girl has Trisomy 21, also known as Down Syndrome. Yes, Ellen is already a trailblazer. Blessed with excellent health and a nimble mind, she has already achieved a great deal for any girl her age. She is a Brownie. She’s in a hula and Hawaiian Studies class on weekends. She is bilingual. She adores reading. She’s a pretty good speller. She’s being brought up in two faith traditions and attends a Sunday school. She’s embraced by the YMCA community, our family’s second home.
And for all that, she may need, at least for now, extra support, even one-on-one assistance in subjects like math.
I looked around the classroom where my daughter spends many days. The walls, decorated with children’s work, maps, and illustrations, protected us from the sudden downpour outside. The chalkboard, a multi-colored roadmap to navigating a second grader’s day, showed me one of many ways my daughter is being guided to her potential.
And then I took in the participants for our after-school conference, all members of Team Ellen: the counselor, like me, slowly graying at the temples, unlike me preternaturally calm, who stated why we were all there — “To reach agreement on what the next steps are to help Ellen reach her eventual goal: graduation from high school and her acceptance and graduation from college”; Ellen’s generous, smart teacher whose insights after knowing my daughter for just three weeks are right on the mark yet who looked grateful when I wanted to share more and who stated what she wants most for all her students: A Never Give Up Attitude; my husband, the definition of wisdom and clear, measured logic; and me, Mr. Wear My Heart on My Sleeve.
I held up pretty well, though. My relief turned into streams of gratitude for Team Ellen that began to overflow as much as the creek near our home rushed free past its traditional path as the rain continued.
I looked at my daughter this morning with more tranquility than I usually do. The rain had ceased hours ago. Ellen may stumble now and then, but I have a hunch she will be like me: a late bloomer and bit of an overachiever who is unexpectedly, and not entirely by choice, a trailblazer. She is lucky to have Team Ellen, which keeps growing every year, to help her stay on track.
Blogging, Community, Early Education, Education, Faith, Fate, Fulbright Program, German Heritage, German language, International community, Languages, Mainstreaming, Marathon training and running, Presidential election, Trisomy 21, Wimbledon
Now that I’m posting only two days a week rather than five — after meeting my goal of writing every day but weekends and holidays for a solid year — the topics about which I could write seem to be overabundant!
Here we are, for example, in the thick of Wimbledon. Do I offer thoughts about the surprises of the tournament that lasts two weeks and is the one time of year when I try to rearrange my life around tennis?
Should I share insights about how my husband and I are preparing our daughter for second grade — for most parents probably not a huge deal, but somewhat uncharted territory for a precocious child who is holding her own with other kids her age but who nonetheless was born with an extra chromosome. Is there more my husband and I should be doing? Is there less?
Perhaps some advice for my followers about wisdom I’ve gained training for my 19th marathon that is less than two weeks away?
Or do I reflect on the astonishing turn of events with the new occupants of the White House?
I’ll pick the latter but for this post only as it relates to a subject near and dear to my heart.
As it desperately tries to make itself credible in any possible way, the Trump administration has again made a proposal that defies logic: a 47% cut to the Fulbright program as one of many painful reductions to a State Department that is every day rapidly losing talent, purpose and meaning.
The program was launched by Sen. William J. Fulbright right after World War II to encourage global study, understanding, and constructive engagement with the world’s community of nations.
I think many of us are trying to figure out if Donald Trump is a nationalist, isolationist, or just breathtakingly shortsighted. I wish he knew some basic facts about Fulbright.
Over seven decades, some 370,000 people from 165 countries — Americans studying overseas, and men and women from other countries attending universities in the United States — have received Fulbrights. They include Nobel and Pulitzer prizewinners and former heads of state.
In the current budget year, 8,000 scholars from the United States have been funded by $235 million from the State Department to study abroad. The Trump administration hopes that amount will shrink to $125 million, much less than universities, governments of other nations, businesses and donors offer to maintain the Fulbright program.
I was once a young man who dreamed of studying and living in a German-speaking country to embrace my heritage and language of my forefathers and foremothers. To my great shock, I received a Fulbright to study in Austria for two years. I stayed for a few after that to work in an embassy. I still have poems from that time that I wrote in English, German, and French. Receiving the Fulbright changed my life. It made me strive to be a citizen of the world and inspired me to make a career of helping young people achieve their dreams through education.
There are thousands of former Fulbrights who have a more important voice than I, but I want to add my words to their efforts to lobby for full funding of the program, perhaps for even an increase, so the world has a better chance to advance.
I know I have a (large) sentimental streak, but to see my daughter embrace teachers who have helped her become a better writer, reader, thinker, learner, person who will use her best heart and mind, well, I can only express gratitude.
Have a safe, wonderful holiday weekend, Dear Readers! I’ll see you back on Wednesday.
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.