We’re all a little dressed up for Father’s Day, in our case Fathers’ Day!
Have you ever completed a marathon or the equivalent thereof, like finishing a long absorbing book or tennis match, a school year, watching a major tournament from start to finish, finally writing a poem that you’ve had in your head for years, closing out a commitment for an organization or cause as a volunteer? Anything where you’ve invested a decent of amount of heart, soul, and sometimes muscle? And then …
I’ve seen and experienced this first hand.
With Wimbledon on the near horizon, I remember dozens of matches where a player out of nowhere would play the match of his or her life and then show up on court the next day a completely different player. It happened very recently at the men’s final of the French Open. Stan Wawrinka, who had beaten Andy Murray a few days before in five grueling sets, looked a little lost against Rafael Nadal. It seemed like he was just going through the motions.
When I lived in Baltimore, I trained for marathons with an amazing group of women who were far more talented as runners than I. To use a running term, I frequently drafted off them to conserve energy I needed as we ran miles and solved the world’s problems, often before 7 a.m.! My training partners were smart about gearing up for a big race and then gently coming down from the high of finishing it. Usually, the day or two after a marathon, we would start a bit later, sometimes even after the sun had risen, and slowly jog a few conversational miles.
My writing this blog for a year coincides with the start and finish of my fiscal year at my job where, as a fundraiser, I’m quietly gearing up for a last surge in June to reach goals. I’m almost there!
Starting this blog was a goal I held since my daughter was born. It took me six years to overcome my internal hesitation (in German, literally overcome my internal pig dog!). Once I did, I was surprised how much I looked forward to writing every day. It became a habit I embraced. Poems I wanted to write, people I wanted to thank, causes I wanted to raise awareness about, whimsical thoughts I wanted to explore — I found I could do all that and more with the blog. I even made new friends who followed the blog!
So as I near the end my fiscal year and blogging every day except weekends and holidays for 12 months, I think about my wonderful marathon friends in Baltimore, how they would approach a gentle, intelligent way to restart, reboot, redefine the next miles after a marathon. I would like to dedicate this post to them, particularly Anne, Linell, Laura, Linda, and Heidi. I miss them and I hope we will all run together in Hawaii some day!
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.
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.
I’m home today with a fever, so if my writing is a little off, please forgive me!
While struggling to get out of bed for a cup of coffee, I saw a news segment about Maria Shriver leading an event this Sunday with prominent journalists hosting panel discussions in major cities about topics that include fitness, food, nutrition, and sleep.
The event, MOVE FOR MINDS, will bring women together to increase awareness of Alzheimer’s as a women’s disease and the need to raise research funds to find cures. Participants will be encouraged to take part in workouts that challenge them physically and spark neural activity in the brain. The event will also promote brain healthy food and lifestyles.
My daughter, like most people born with an extra chromosome, is susceptible to Alzheimer’s. For Ellen and others who have Down syndrome, Alzheimer’s tends to appear 10 to 20 years earlier when compared to the general population.
When I first held Ellen in my arms a few days after she was born, I knew she would lead an incredible life. (But don’t most parents feel that way?!)
When she was a few months old, an early education specialist visited our home. She asked me if there had been an official diagnosis. I said yes but asked why she asked. “I’ve been around a lot of children,” said Sharon. “She is so alert. There is so much going on.”
It may not have exactly been at that point, but soon after my husband and I intensified our research about Down syndrome. We learned a lot about nutrition, lifestyle, early education, physical activity. We joined a wonderful online forum for parents of children born with an extra chromosome. We met parents of teenagers who had graduated from high school.
As all parents of children who are “different” know, it can be at times a lonely path. But we have been blessed by the encouragement and knowledge of many astonishing women and men whom we call Team Ellen.
We are also lucky and grateful for Maria Shriver and others for their courage, humanity, activism and advocacy. They inspire and engage scientists, philanthropists, politicians, industry leaders, and ordinary people like my husband and me who together may accelerate finding a cure for Alzheimer’s, especially as many baby boomers will be staring it in the face or in the faces of their loved ones.
There is a lot of hope. Ellen has been following a nutritional regimen since she was six months old. My husband and I feel like it has made quite a difference. She loves nothing more than to climb walls at the YMCA! She is verbal (at times a bit too verbal) in two languages. With patience, her fine motor skills are improving. Most recently, a link in the online forum Ben and I belong to featured an article about a drug in trials that could reverse the progress of Alzheimer’s.
So what about my 5 Degrees of Separation from Maria Shriver? In my work in philanthropy, I once spoke with Sargent Shriver, Maria’s father, who was first director of the Peace Corps and former president of Special Olympics who was diagnosed with Alzheimer’s in 2003. Thank you, Maria, for looking out for women like my daughter. Because of your advocacy, you inspire me to do my part.
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!
The beauty about a blog is that ideas swimming in your mind can become actual posts — and then they are no longer wandering around like aimless sleepwalkers!
While ironing, I thought about achievements in life that no one can ever take away. I love to iron, but that is not one of the achievements! I hope they are in the right order. I’m sure I will rethink them in the following days and I know some will change in the years ahead.
I am asking, Dear Readers, if you could share a few of yours with followers of this blog. After all, it is called Tennis, Trisomy 21 and Taking in Life Together.
Today usually would be Friday Picture Post. Tomorrow, celebrating our daughter turning 7 with an official birthday party — yes, we brought cupcakes to her schoolmates earlier this week — we will have plenty of pictures.
I’ll briefly note something I haven’t had plenty of since I began this blog more than 10 months ago: a nasty comment, my first and only! I guess I’ve been very lucky writing about Ellen and her two dads, growing up gay, our daughter being born with an extra chromosome, civil rights, and other topics.
I mentioned the remark to a friend. “Why do you put yourself out there?” he asked. “Why not just play it safe?”
Maybe at different times in my life I could have played it safe, but I don’t think that was my destiny. Maybe I could have even “passed” for straight. I sure tried, but thank goodness I had enough people rooting for me — some silently, others more demonstrably — that when I was finally ready to accept that this is who I am and this is how I was born, I knew that playing it safe and not standing up for myself and others is fighting fate, never a good thing to do.
Readers of this blog have written or even said to me in person, “Thank you for what you write. The world needs to know what it was like for you growing up, what it is like for your daughter, otherwise people would have no idea.”
My husband is a very private person. While I don’t like to make comparisons, I’m pretty sure he grew up in a more liberal environment. I’m also reasonably sure he wasn’t readily identified as being gay as I was, although, ironically, I’ve been a jock all my life and I’m pretty conservative in many ways!
But I’ve always been drawn to trailblazers like Billie Jean King, Althea Gibson, Lena Horne, Jackie Robinson, Abraham Lincoln, Harvey Milk.
As brutal as it must have been for them at times, they did not play it safe.
When my family crossed the Atlantic Ocean and Theresa Rosen, a fellow passenger on a ship with hundreds whom I met by chance, spoke with me about my daughter for 10 minutes, I knew that fate had brought us together. Rather than play it safe about my daughter, to have her be nicely and sometimes quietly be held back in life by people who think they know more than they do, I would need to be her constant, reliable, knowledgeable advocate and become captain of Team Ellen for a good part of the rest of my life. Thank you, many followers of this blog, for being part of or for joining Team Ellen.
Theresa Rosen always will be part of Team Ellen which is why I have her picture with me every day. I received the picture from her husband who wrote me that Theresa had died a few years after Ben, Ellen, and I met her in the middle of the ocean.
For me, and for the faith and love Theresa unhesitatingly gave our family, she will always walk on water. I can never thank you enough Theresa.