Two lessons

Yesterday was Mother’s Day. As often happens on both this and Father’s Day, we were unable to be with our children and grandchildren. It does not bother me because we are blessed to spend so much time with them throughout the year. We did go over to visit Barry’s mother. Although she lives just a few blocks away, we do not get over there as often as we should. I would think about going to visit her now and then on my own, but I cannot actually do that for what may seem a rather odd reason. When I was diagnosed two years ago, Barry and his brother Rich decided it would be best for everyone if their mother be kept in the dark. They did not feel she would handle it well, which would be additional stress none of us needed. I had to trust their judgment on this one and she remains clueless, although I have been surprised that she has not commented on the weight loss. She is almost 93 and each time I do see her she looks more and more frail to me, but she is doing better than we expected her to do mentally. She has a woman who comes in every day to do things for her and take her to medical appointments, and she has fortunately stayed in fairly good health.

Before we visited with her, we went out to buy flowers for our patio. We have flower boxes on the failings that have sat empty for the past few summers, and we felt it was time to put some color there again. Early this morning I planted the four flower boxes, a feeble attempt to create a small piece of Giverny. Neither of us had any idea how many to buy, so as we so often tend to do, we vastly overbought. The good thing is that we have some space in the yard where we can plant the ones I did not use.

By the end of last week the forecasters were predicting beautiful weather for Sunday. The Mets were playing a day game so Barry got us tickets. When we showed our tickets at the gate, I was handed a t-shirt with the Mets logo in pink on the front (and an ad for 1-800 flowers on the back). They had a special program called “Bark in the Park”: people bring their dogs – literally hundreds of people did - and parade them around the field. There was music playing, predictable tunes like “How Much is That Doggie in the Window,” but then they played James Taylor’s version of the Carole King song, “You’re Got a Friend.” I do not know if Carole had a dog in mind when she wrote that one!

Beyond the t-shirts, there was quite a bit of attention given to the fact that it was Mother’s Day. That got me to thinking about how difficult a day it must be for all the women who are not mothers but want to be: women who have not yet found their soul-mate, are facing fertility challenges, or have lost a child. While all of those people have mothers, it would seem difficult to celebrate this day under such circumstances. This is another one of those things I might never have thought about before the recent tragic death of 10-year-old Cooper Stock.

We were sitting in accessible seating because the ball park requires more walking than I can comfortably do, and stairs are a particular challenge. This seating is located in designated “boxes” in the last row of the section that have spaces for a wheelchair next to a standard seat for a companion. No steps are required to get to this seating or, from it, to the bathroom and food concessions. Because it is at the rear of the section, it is shaded by the tier above it. It is actually set up quite well. The last row of the section in front of the accessible row is a few steps down from it. A pop fly pretty much landed at my feet but I could not move quickly enough before a fellow sitting in the section in front of ours scooped up the ball. He was able to do this easily because of the drop from our section to the one he was in. I sure would have loved to give that ball to Joshua! A few minutes after this happened, someone from the park office came over to us and said he heard about what happened and offered me a free drink or ice cream. I do not know who thought to summon this person, perhaps it was one of the other attendants who may have seen what happened. Barry told me he did notice that the fellow who took the ball gave it to a child who appeared to be a relative or a friend.

Although the Mets scored 1 run in the first inning, it was downhill for them after that. It seemed to me that they left a lot of men on base! By the top of the 9^th the score was Phillies 4 vs. Mets 1, and along with many other people we headed for the parking lot. By the time I found the game on the radio in the car, the Mets had scored 3 runs in the bottom of the 9^th! So the game went into extra innings. We arrived home to watch the Mets win 5 to 4 in the bottom of the 11^th inning!

There are two lessons learned from this story:

1. If a ball lands at your feet ACT QUICKLY!

2. It ain’t over ‘til it’s over!

Have a great day!

Love,

Rebecca

Who is wise?

We are spending the next couple of weekends in New York because of commitments Barry has on Friday and Monday. Tomorrow we are having friends join us for lunch. We have decided to trust the weekend weather forecast and last night Barry bought tickets for the Mets game on Sunday afternoon. We did not want to go to the zoo or the botanical garden because they are very crowded on any nice Sunday, particularly on Mother’s Day.

I have written a number of times about our young friend, Coby, who has Down Syndrome. Recently his mother gave his teacher (at the public school he attends) an interesting article she had read that led the teacher to ask Coby if he wanted to speak to his classmates about having Down Syndrome.

Coby was thrilled with the idea and got started immediately. He wrote the first two pages freehand and then started to type on his own, bringing home the document on his flash drive. His mother helped him to organize the material but the words are his. The final product, which he is to present to his class next week, follows.

Down Syndrome: A New Perspective

By COBY

My name is Coby. I am 14 years old and I have Down syndrome.

I was born on December 12^th 1999 with Down syndrome and I will have it my whole life.

My parents did not know they were going to have a baby named Coby who was going to have Down syndrome. It was a surprise when they found out.  But they tell me I was the best surprise ever and they got very lucky!

Do you want to know what Down syndrome is?

Down syndrome is when someone is born with an extra chromosome.  Most people have 46 chromosomes. Chromosomes come from your mom and dad and shape the way you look, learn and are as a person. I have an extra one! That means I have 47 chromosomes!

My extra chromosome makes me different, but at the same time, I am also a regular teenager just like you guys.

Because I have an extra chromosome, there are some things that might seem or look different about me.

For example, sometimes it takes me longer to learn something or understand how to do something that you might learn very quickly. Like math and money. I work really hard to remember how to count, add and recognize all the coins and bills. But sometimes I forget the things I learned and have to practice a lot more than you do to remember them again.  I wish it wasn’t so hard for me, but this is the way I am, so I do my best.

Another example is that it is harder for me to do sports. I might run a little slower or I might not be able to catch a ball all the time when it’s thrown to me. I work really hard to make myself stronger. I do Physical therapy every Monday night. It helps me become stronger. I also practice tennis and gymnastics to make sure I can do the same things everyone else can do. I work really hard and practice a lot.  

Another thing that happens when someone has Down syndrome is that it is harder for us to speak clearly. The reason is, we have low muscle tone and our muscles in our mouth are not as strong as yours. Just like the muscles in my body are not as strong as yours.  What I do for this is I have speech therapy every week to practice my speaking. So when you go home at night after school to do homework or play a sport or watch TV, I go home and do a therapy to help me do things the way other people do.

I am lucky to have awesome best friends that also have Down syndrome like me.  Their names are Alex, Mia, Andrea, Sam and Chad. I have some pictures to show you that I will pass around.  We get to do a lot of fun things together and like to just hang out. Because we all have Down syndrome we don’t judge each other or feel bad for each other. We just have fun and are happy to be together. 

Even though we all have Down syndrome, we are still different from each other. Some times people make a mistake and think that everyone that has Down syndrome is the same. That is just silly. We are all different people just like all people are different from each other. We don’t all look the same and act the same only because we have Down syndrome. We’re each a different person with a different look and a different personality.

Also some of us can read better than the other, and some of us can play sports better than the other. Some of my friends are in a regular school like me, and some of my friends are in a special school for kids with disabilities because they need extra help with learning and schoolwork. So just like all kids are different from each other in so many ways, so are kids with Down syndrome.

Having Down syndrome can be hard sometimes. There are times in which I get frustrated because I want to fit in and it is hard for me to do all the same things you guys do. And just like everyone else, I can also get my feelings hurt, and it is hard for me to share those feelings most of the time, since not everyone understands what I’m saying, and I get shy, and also like to be happy all the time.

I wish, if someone did not understand me, that they would just ask me to explain what I am saying a little slower and show them. If they give me a little extra time, I can pretty much do the same stuff you do. It just take me a bit longer. So that can be frustrating for me and I know it is something I will always have to deal with in my life.

But I am very lucky to have a loving family and amazing friends who love me for who I am and always tell me how proud they are of the things I am doing.  Every year we all get together and walk for Down syndrome at the Buddy Walk. It is my favorite day of the year. All the people I love get together to walk together for Down syndrome, to raise money for more research and make people in the world aware that we are NOT very different than you.

My mom is awesome because she helps me a lot and she also organizes Down syndrome teen events for my friends and I to enjoy.

I like Beachside because everyone here knows me and treats me nice most of the time. Sometimes when someone does not treat me nicely, I get sad, but I know they probably just don’t understand why I am different. But I have so many great friends here that I really love so much because they take care of me and help me a lot in school and spend time with me, so I love going to school every day.

I am also lucky that my family knows how cool I really am and doesn’t get upset that I can’t do all the things a regular teenager would do. I love hanging out with all of them and I do look forward to going to college and getting a job like everyone else.

I know I might have to work a little harder than a regular kid to do all that, but I am ok with it. And even if it takes me longer to get to college and get a job, I am not going to rush and not going to worry. My mom says I can take my time and one day I will be able to do it all. 

I hope you now understand a little bit more about Down syndrome and what it is like to have it.

If you want to ask me any questions that is ok. I will try to answer as best as I can.

Thank you for listening and learning about Down syndrome.

You guys are really great.

The Talmud, in chapter 4 of Pirkei Avot, Lessons of the Fathers, provides simple answers to some basic, fundamental questions:

Who is one that is wise? One who learns from all people.

Coby has been an amazing teacher!

Love,

Rebecca

Correction

I misspoke at the end of yesterday’s post: this week’s Jeopardy is not the “Tournament of Champions,” but rather the “Battle of the Decades.”

Sorry, Alex.

Love,

Rebecca

An exquisite photo

In early April I mentioned that Dina was taking Julia for pictures with a local young photographer who is trying to gain more experience with babies. In exchange, the photographer agreed to provide Dina and Aaron with an electronic version of one shot of their choice. The proof pictures were so beautiful that it was difficult to select from among them, but Barry and I favored the same one that Dina and Aaron chose. Amazingly, Julia slept through the entire photo shoot, but the result is surprisingly sweet. 

Barry and I have spent a good deal of time discussing the pros and cons of our current electronic era. I worry that young people are losing their ability to interact in the old fashioned way. Barry keeps reminding me that, if not for the connectivity we now enjoy, I would have spent most of those long days in the hospital and at home during chemotherapy by myself. He felt he was able to have the very best of both worlds, to continue his work, barely missing a beat, and to be there when I needed him. With those memories less vivid as time goes by, I am back to my old worries about all of our noses being in devices all the time. That is why I have resisted learning how to send and receive text messages. I was goaded into it last week by, of all people, a plumber who favors that form of communication, so I learned a few basics in order to work with him on some repairs in our house. Having said that, I am not prepared to allow this to become a major part of my life, so please do not send me any text messages!

It is no surprise, then, that when two friends posted the following piece on their facebook pages, it resonated for me. It is quite well done. As a society, we need to work at carving out something in the middle. 

We are enjoying the Jeopardy Tournament of Champions this week, but we look forward to the return of the current champion on regular Jeopardy, Julia Collins, who last Friday won her 10^th game, giving her the longest winning streak ever by a woman on the show. She is the antithesis of Arthur Chu, about whom I had written some time ago: she is mellow and charming. But beneath that lovely smile is a very active brain! So Barry and I have been rooting for Julia, who, incidentally, has a lovely name! We look forward to her return when the current tournament ends, and to seeing her on future tournaments of champions.

Jeopardy winner Julia Collins

Meanwhile, have a great rest of the week!

Love,

Rebecca

Pictures

Sometimes a relatively quiet weekend can be especially wonderful. We drove up to Sharon on Friday. Dinner was just the two of us at our apartment. In the morning we stopped by to visit Julia and her family on our way to synagogue, and we all walked there together. We had made plans to have Eliana join us for lunch after services. Her parents were having guests who have much younger children, so it was a perfect opportunity for us to have some alone time with her. We had our lunch and then went outside. The management of our Sharon apartment building has done some work on the grounds, including putting in some benches. Barry and Eliana took a bat and some balls and had a lot of fun playing while I watched and provided commentary. She ran herself ragged but he was admittedly making it pretty easy for her to hit the balls. We all enjoyed it. We came back inside, played a couple of games, and then headed back to her house to spend some time with Maya.

On Sunday morning we took Eliana and Maya to a local bowling alley and then over to a relatively new place called “16 Handles.” The name is a play on the title of a 1980s movie called “16 Candles.” The “handles” are the levers on the 16 flavors of frozen yogurt and the countless toppings, all self-serve. I think the yogurt is supposed to be fairly low in fat, but of course many of the toppings are not. So at the end of the day it is probably not all that much healthier than a sundae at PJ Licks, but it induces a lot less guilt because it has that word “yogurt” in it.

We arrived back in time for Eliana, Joshua, and Ella to go to a youth program at the synagogue in preparation to Israel Independence Day (which is today). Barry had some work to do so he went back to our apartment and I hung out with Julia. Julia is a smart little girl, and she has already figured out how to get someone to hold her much of the time. She still likes to curl up into the position that was familiar to her for those nine months in utero. It is just so sweet.

We had dinner with Dina and family and then headed back to the apartment to get some sleep. Our plan was to leave around 9 am on Monday morning so that we could make a stop at a place called The Camera Company that some friends had recommended. We have 27 rolls of Super 8 movie film from a sound movie camera we bought during Simmie’s first year. At the time, that camera was a very big deal, although now it seems practically prehistoric. In any case, we no longer have any sort of projector on which to watch the tapes, so we have long wanted to transfer them to DVDs. At the same time, although we knew that Costco offered such a service, we were nervous about just sending them off somewhere and wanted to find a reputable local place that does the work on site themselves. So we started asking around and some Sharon friends told us they had done this with their old film. I think the children will really get a kick out of seeing their mothers as little girls.  Unfortunately, only about half of the tapes are labelled, which means we have no way of putting them all in order, but we should be able to address that once they are on DVDs.

Meanwhile, I spent the rest of yesterday working on another visual arts project of sorts. When I posted the first pictures of Julia at the end of March, I mentioned that I had similar pictures of me holding each of the children during their first days. Unfortunately, I only have the electronic versions of Maya and Julia. I may have mentioned, try valiantly as I might, I have not been able to find the memory card(s) from before 2007. So I scanned in hard copies of the other three children, and put together a collage. I have ordered a print of this and want to see how it will come out before I continue on this project of recreating albums from those first few years of grandparenthood. Here are the five pictures: can you name the babies? Hint: look at my hair. 

We are hoping to squeeze in a quick visit to the NY Botanical Garden this week if there is a day without too much rain. Otherwise it is a quiet week back in Riverdale for me, and a very hectic week at Mount Sinai for Barry.

Be well, all.

Love,

Rebecca

Starry starry night

My daughter Simmie sent this to me and I could not resist passing it along, along with Don McLean’s “Starry Starry Night.”

Very very cool!

Love,

Rebecca

Bus Stop

The endless rain brought to mind a song I loved, absolutely LOVED, back in high school, Bus Stop by the Hollies (1966). The song tells a charming story about a young man who invites a young woman to share his umbrella while they wait for a bus in the rain. I have not listened to this song in a long time but I still remember all the words. Well, all but one of the words.

Isn’t youtube wonderful? First, I found a video with two of the leads from the original band singing the song just a few years ago. One of those fellows is Graham Nash, who later went on to great fame with David Crosby, Stephen Stills, and Neil Young. Then I found a rather gritty video of the Hollies singing the song live in the 1960s. Listening to this song today, with headphones, for the first time I correctly heard that word I had long not known:

That’s the way the whole thing started,

Silly but it’s true.

Thinking of a sweet romance

Beginning in a queue.

All these years I thought the last word was “dew,” although that never made sense to me. Finally, the mystery is solved! Maybe it was not just the headphones: maybe it was also years of working at Pfizer with colleagues from the UK, and travelling there many times. They really do use that word “queue” to talk about waiting on what we call a “line.”  

We heard another good example to add to the collection of malapropisms.

The newscaster was describing conditions in the mid-Atlantic, which is still recovering from the most recent round of tornados*. The newscaster said that conditions in the area were exasperated by the current storm. I am quite certain he meant to say that the conditions had been exacerbated by the storm. However, there is little doubt that the people who live there are quite exasperated at this point!

Stay safe and dry!

Love,

Rebecca

*tornados, or is it tornadoes? Seems either is correct.