I invited a friend to my blog today. Sherry is one of the kindest people I have ever met, a terrific writer, a true development professional, and an amazing mother. I’ve worked with Sherry for two years writing grants to support a small, independent school. She makes the intricacies of foundation requirements easy to process, the subtleties of a grant application fun to work through. We’ve had many long conversations in our work together, and we have become friends.
Today Sherry told me Ellen is an inspiration for a book she is considering writing, the theme of which would be children accepting differences and recognizing what they have in common. Sherry noted that Ellen came to mind because her parents are two dads.
I will admit, that yes, although I played hockey, I liked figure skating — big surprise for a gay man! When I really like a performance at the Olympics, I’ll listen to commentators from the United States and Germany. (I’m bilingual.) They usually have different takes on the highlights of the performance.
My chest was swelling a bit when Sherry was describing Ellen being an inspiration for children accepting differences. My mind immediately went to Ellen’s extra chromosome as the reason why other children would gain valuable lessons by including her in their lives. Sherry, though, talked about Ellen’s two fathers!
Isn’t it funny how the same topic, like the same figure skating performance, can be viewed in two entirely different ways? Sherry is right: there may well be children and parents who find Ellen’s home situation something new to take in, but I’m used to it!
It’s a scary time for the world in many ways, but I hope that what once was beyond the pale, like gay marriage, will more and more become the norm. I also will do whatever it takes so that folks like my daughter who have an extra chromosome are accepted into all reaches of life. I look forward to Sherry’s book and thank her for being inspired by Ellen.
I bet when my friends and family read the header for this blog entry, they skipped a tiny breath! No worries: Ellen is absolutely fine. But this blog is about tennis and trisomy 21. The setback I’m referring to is Roger Federer missing the rest of the season as he recovers from knee surgery. (Ben would say this a classic example of my German sense of humor!)
Believe me, I would let you know if something serious were going on with Ellen. But let’s turn briefly to tennis. It’s taken me a while to come around to Roger Federer. He’s too perfect. He moves too gracefully around the court, always looks like he’s ready for a cover of Vogue, has won everything in sight, has four gorgeous children, and could build private grass courts at all his homes if he wanted to. His family is financially set for at least the next three generations. He even embraces his fiercest rivals, like Rafael Nadal and Novak Djokovic who are the only reasons why he may not be a unanimous choice for the greatest player of all time.
Fortunately, the game on the men’s side is more exciting than I can remember with Djokovic, Andy Murray, and Stan Wawrinka always contenders for major championships, the chance that Nadal and Federer might still have one last French Open or Wimbledon, respectively, to add to their resumes, and a new generation eager to catch up to them. If only the men and women embraced serve and volley tactics again.
So, recover well, Roger. I’m not even sure I will follow the Olympics this year, but I know many of your loyal and new fans, including me, will miss you at the U.S. Open.
When I learn a new word or start actually speaking or writing one that’s been in my head, it seems like I start to see it everywhere.
Resveratrol has been part of my cocoon vocabulary for about eight years now, ready to emerge.
Polyphenol resveratrol is found in plants and fruits, including red grapes used to make wine. Scientists and others have become pretty excited about it because it may slow aging, and articles crop up fairly regularly about it being tested to fight cancer and depression, reduce the risk of heart disease, and prevent insulin resistance, a precursor to diabetes.
About eight years ago, a wonderful friend was battling prostate cancer. A distant cousin of mine who was part of the Waldorf community where Ben and I taught collected funds to pay for resveratrol supplements to help our friend who lost his battle with tremendous dignity. So resveratrol has been on my radar screen ever since, but in the last few years, as our daughter grows into a beautiful young girl, it’s a topic about which I’m slowly becoming more fluent.
A new study has shown that resveratrol restores neuron formation in animals with a similar condition to trisomy 21 (also known as Down syndrome, which is caused by the presence of all or part of a third copy of chromosome 21—hence trisomy 21).The study was conducted by the Institute of Biomembranes and Bioenergetics of the National Research Council in collaboration with the Department of Basic Medical Sciences, Neuroscience and Sense Organs of the University of Bari, the Department of Neuroscience and Brain Technologies of the Italian Institute of Technology, and the French National Institute for Health and Medical Research (Inserm), and results have been published.
Wow! I believe for the first time since I began this blog a month ago, I have used the words “Down syndrome,” instead of how I prefer to characterize my daughter’s “condition,” that she was born with an extra chromosome. That is definitely a topic for another blog entry! What is most important for today’s entry is the heart-surging hope for all parents and loved ones who may benefit from this study, continued research about it, and clinical trials that could be organized.
Another blog topic will be our daughter’s nutritional regimen which we believe has helped her immensely. We also know, as I have written before, that we are very lucky. I’ll have to explore all kinds of things, including thoughts I have not even processed out loud to myself, about the word “spectrum,” but many specialists say to Ben and me soon after meeting Ellen, “Oh, you know she’s on the high end of the spectrum.”
In my heart, I know this, and am mightily grateful that Ellen’s issues are relatively minor. But I wake up every day tuned into the extra chromosome, just like I knew from about age 8 onward that I was gay. I did not want to be “different,” but now I thank the universe that I am. I’m pretty sure Ellen will find peace with herself much sooner than I did. I can be a champion not only for Ellen, but for others with an extra chromosome. I know when Ben and I first learned about trisomy 21, I didn’t know where to start. Maybe for those reading and following my blog, a community of minds can help accelerate progress being made with research about resveratrol and other advances.
Living near the mountains, we were lucky to stay dry through Tropical Storm Darby this weekend. Ellen slept through the considerable thunder and lightning, which is unusual for Hawaii. Homelessness is pretty serious on Oahu, and I could not stop thinking about how many families without a home must have had their lives thrown even more off course yesterday. We often see these families on our way to the YMCA, museums, Ellen’s favorite place to have breakfast. We live pretty modestly, but we have a good life in a place where the cost of living is very high.
Laura Siegemund of Germany won her first title on the main women’s professional tour. She is a late bloomer and has slowly but surely climbed her way into the Top 50. During her press conference in Bastad, Sweden, yesterday she reflected on her thankfulness, on staying out “of that narrow, unhappy perspective. I try to see the big picture more now than before.”
Those are my thoughts too as a new school year approaches and time becomes even more valuable with our full-time careers and Ellen entering first grade in a school known for its high academic standards. (She will be in a “regular” class.) Yes, we will no doubt have expected and unexpected challenges, but looking at the big picture, we’re in pretty great shape to embrace them.
Ellen and I are heading into the homestretch. Daddy comes home today, so Papa may well become second fiddle again! As Ellen in her dramatic, six-year-old fashion would say, “It makes me sad.” It’s been a long time since it’s been just the two of us. I didn’t realize how much I missed it.
Last night as I was helping Ellen fall asleep, she looked more angelic to me than ever before — and that’s saying a lot! She smiled and asked, “Who is God?” I had no idea how the question came about. Ellen and I are Quakers, but we don’t talk about God a great deal, or maybe we do and I just don’t know it.
Ellen then said, “God loves all of us and he is a butterfly.” I knew I had to write those words down. I’m pretty sure I’ve never referred to God as a man or woman. Given that two of Ellen’s grandparents died in the past year, Ben and I talk about angels and heaven, but mostly we say that angels look over us. I go a bit further, probably to Ben’s dismay. I mention that if you want something, you need to ask the angels for it and you need to state clearly what it is. That has always worked for me!
As for the butterflies, I’ve always believed in my overly idealistic way that they are powerful symbols. Of what I am still trying to figure out, but I’m always relieved when I see them. I should probably leave it at that for now as this blog is about tennis and trisomy 21. I said to a friend yesterday who has been following the blog that tennis has taught me and reinforced valuable life lessons. Trisomy 21 came much later into my universe than tennis, but it’s also given me a range of perspectives I never would have known how to tap into.
Before I get overly profound, I’ll give grades for Ellen and Rüdiger being on their own this week. (I do come from an extended family of teachers!) Rüdiger: B-. My angel: A. She’s pretty amazing night and day.
I missed the Open House and art show yesterday at the summer school my daughter attends. I’m still kicking myself a bit.
My somewhat lame excuses: a few projects at my shortened workday this week where I needed/wanted to make progress, and the logistics of finding a ride to the Open House and back. Because of my faith, which I can get into later on, I gave up my driver’s license soon after I moved to Hawaii. I mostly walk or am driven by friends and by my husband. Fortunately, he very much enjoys nearly all aspects of the modern world!
When a friend drove me to pick up Ellen, one of her teachers said it was fine for me to take a quick peek at the students’ artwork. I scanned the beautiful creations hanging on a line fastened from one wall to another so adults could stand and marvel. I saw a piece of colored paper with Ellen’s name, which she herself wrote, but I did not see an illustration. “Oh, no,” I thought, “Does Ellen have a mostly blank piece of paper?”
But then I saw the other side. Ellen had made a collage with a figure near the top of a tree. The facial features were more abstract than those drawn by other students, but they were recognizable. Her classmates’ figures were at the bottom of the tree and somewhat clearly defined. Their colors seemed pretty appropriate for trees, grass, the animals near it. Ellen’s choice of colors and the shape of her animal were fascinating, but not what I would call at first blush standard. But I could not stop staring at it, could barely contain the pride that moved through my body in a few seconds. It was stunning.
Ellen’s school work is in some regards not quite at the level of her age peers, but she is more than ahead of the game in understanding, reading, and speaking two languages (English and German). Her fine-motor skills need improvement, but she is getting there. I tried not to compare Ellen’s art to that of her classmates, but I couldn’t help myself. I’m sure this is a father’s heart speaking, but I recognized a real sensitivity in Ellen’s creation.
Later after tossing and catching a ball with Ellen for 45 minutes and practicing addition with her for another 30, we made breaded tofu together. Ellen mentioned the Open House. I told her how sorry I was I couldn’t make it. She said, “That’s all right, Papa. I made a panda in a forest!” So that’s what that figure was: Ellen’s panda up in a tree, smiling and knowing it could be proud of how high it had climbed.
This is one of those weeks leading up to the U.S. Open where it’s too early for the really big warm-up tournaments. A number of second- and third-tier tournaments are being played on both the women’s and men’s professional tours. I scan the results like I have for decades, note who has won well and who has had a surprising loss, but usually, one can bet that nothing earth-shattering is going to happen during these weeks. The most dramatic news, perhaps, is the number of withdrawals from the Olympics.
Fortunately, my week as a single parent has been — dare I write it, relatively smooth. Our little girl sobs a couple times a day and states clearly how much she misses her other dad, and she needs a few extra bedtime hugs and songs, but all things considered, it’s been uneventful. Thanks to wonderful friends and my husband’s great instructions, I’ve been following Ellen’s routines for her nutritional supplements (a subject upon which I can expand more in another blog), her need for lots of reading on her own, even a surprise trip to the Y yesterday where she could climb the wall to her heart’s content!
For me, I’ve been lucky so far to juggle some deadlines at work in the morning while Ellen is at summer school, and bonding time with our daughter in the afternoon and evening. I wake up at about 4:30 a.m. to squeeze in a bit of work time on the computer and to catch up on the world before Ellen wakes up without fail at 5:30. I try to do this in the evening after Ellen falls asleep, but I usually don’t last more than an hour!
At times like this, I like life to be uneventful — check that, I’m extremely grateful! My mother balanced three kids, a full-time career she adored, and my father’s studying for college degrees in another state and coming home on weekends. I took it for granted that she did all this with great humor and grace. I don’t take it for granted any more!
This week I have a taste of solo parenting, and naturally after two days I’m quite aware that I pale greatly in comparison to Ellen’s other father whom Ellen and I miss greatly!
Thank goodness for Ellen’s many aunties and uncles, like the wonderful friend shown in this picture with Ellen, who are helping out. It really does take a village. I was lucky to grow up in a very large family with the best aunts, great-aunts, uncles and many others around. (When your maternal grandfather alone was one of 16 children, your family really does become a village.) Here in Hawaii, aunties and uncles may not be related by blood, but they sure take on the roles my relatives did when I was young.
I could go on forever about what I could do better as a parent, and what my husband does with the most natural ease. I will only say that he sings better, has more patience playing all kinds of games, engages Ellen on all kinds of levels where I feel like a rookie! I woke up this morning at 4 a.m. Part of my message to self was to be more like my husband, the best dad I’ve ever met. Fortunately, children are forgiving. Where Ellen last night let her frustration be known that I was not climbing into bed with her at 7:15, nor had sung enough bedtime songs, she embraced me fully this morning. What a relief!
This week has also been humbling in that I know there are plenty of single parents around who do a fabulous job with their children day in and day out, many of whom do not have the advantages our family does. I salute all of you!
Saturday was family YMCA day, or morning to be more accurate. Joining the Y has been one of the best things we’ve done since moving to Honolulu: it’s instant community for all kinds of families—gay, straight, black, white, native Hawaiian, Asian heritage. The Y has wonderful programs for all ages. As much as we love our daughter, it’s pretty great that Ellen can be in the children’s area while her dads hit the treadmill or catch up on reading or correcting papers.
The staff at the Y is pretty amazing as well. To say our family has been accepted is an understatement. After more than two years, you look forward to catching up with people behind the counter who greet you several times a week and make an effort to get to know you.
So it came as a bit of a surprise when one young staff member with whom I have chatted regularly for over a year about her life at college, who knows me as a marathoner, and who lives in the same neighborhood we do, asked me on Saturday, “So, what do you do?”
I laughed and said, “How would you like me to answer that?” I told her I was a father, husband, marathoner, tennis player, and worked as an advancement officer at a school. I love my full-time job. I’ve been in the development/advancement field for 20 years now, so I better like it! What made both my Y friend and me laugh, though, was that up to now, I’ve been Ellen’s father and Ben’s husband who runs a lot.
As more people read this blog, I almost feel like I can call myself a real writer again. I went to a wonderful journalism school and have published poetry and tennis articles as a freelancer. But this blog can help build community, be a place where people share resources, learn more about Trisomy 21 (and tennis!).
Mahalo/Danke/Thank you to all of you.