I am beyond proud of my daughter and thankful for this beautiful weekend.
Friday, October 5, 2018
The five of us (Sam came home from college on Thursday) gathered at the synagogue on Friday at 4pm to take photos. The Rabbi and the Cantor joined us for some pictures, and Sofia and I managed a couple of dress changes so we could get formals in our party dresses as well as our morning dresses (and my Friday night dress). Sofia looked so lovely with her hair curled and a little makeup to bring out her lovely features.
Between photos and services, David and Micah raced to the mall to get some watch batteries (for me and for Micah) while Sam and I set the tables for our dinner, which was after services.
There were not too many people at services on Friday night. Many of our guest who were driving in were very late due to a big traffic jam on the Mass Pike. B, K, E & C flew up from Florida, and two other families had home hospitality nearby. A&J stayed with us. Two of my cousins flew in from California, and three pair of parental friends all joined us eventually for the evening. Plus of course our parents and Laura and her crew. My sister and her family got stuck in the traffic so did not make it to dinner.
For services, Sofia started out sitting on the bimah, even though Cantor Ken was standing down on the floor. Eventually, Sam convinced Sofia to sit next to the Rabbi in the front row. She sat in the chair in front of me, tossing and twirling Woody. But she sat quietly.
Then it was finally time for Kiddush. Sofia and I went up to the bimah and set up her book. I stood to her side, and chanted softly so she had a guide, but she recited the words strongly (if not always clearly) into the microphone, only smiling triumphantly when she was done.
We had a lovely Shabbat dinner. Two of my friends acted as kitchen staff so I could enjoy visiting with our guests. It was lovely to see everyone. Micah and I joined the friend table for Birkat Hamazon (I spent most of the meal at that table) and I loved every minute. Sofia ate with Laura and Lilie, and eventually ended up back on the floor, tossing Woody.
We had fun shmoozing, and finally left shul around 8:30. I was exhausted - Sam and I had been at shul all morning to set up, and I had to curl Sofia’s hair, make table cards, and finish all the last minute stuff all day - so I went to sleep early.
The Big Day
Sofia showered in the morning, and I put delicate little braids in her hair to pull it back from her face, with a sparkly bow in the back. She had a blue lace dress for services, plus of course her tallit that we had made last year in the Religious School class workshop. And her black shul shoes, which she mostly manages to keep on her feet.
We got to shul around 9am, and got settled. Sofia wanted to sit on the bimah the entire time, even during Shacharit when the Rabbi and Cantor were still on the floor level. But she sat nicely, holding Woody and observing the crowd.
There were tons and tons of people. Three extra rows of chairs, plus standing room. But empty seats up front (a problem with the layout of the room and people’s natural reluctance to sit up front). Sam, David, Micah and I kept a watchful eye on Sofia, occasionally instructing her to stand or sit or pay attention.
Program Book Text
It Takes a Village
To our family:
Thank you. They say you can’t choose your family, so we are very fortunate to get assigned to you. We treasure your love and support.
We are so grateful to have you in our lives.
To our friends:
We grew up with you, we went to school with you, we sent our children to camp with you, we laugh, we joke, we have long conversations, both in person and on the phone. Your love has been a constant. You CAN choose your friend.
We are so grateful you chose us.
To our Temple Israel community:
Every week you accept Sofia as one of the kids in shul. You usually watch as she runs out door, but will happily help find her when we are searching. You cheerfully accept the candy that you just tossed, as our generous daughter forcefully shares her bounty. You don’t blink twice that Sofia is here. From the beautiful Baby Seder so many of you participated in until now, she has been a welcome part of this community.
We are so thankful to belong here.
To our MetroWest Jewish Day School family:
You raised us all. We are intricately bound up in the tapestry of MWJDS. We celebrated Sofia’s baby naming there. Sofia was a part-time student and is a permanent member of the MWJDS family. Our colleagues, our friends, students, staff and board members, thank you.
We are grateful for your support and inclusion.
To Sofia‘s teachers, therapist, counselors and coaches:
Since she was three weeks old, you have been part of the tapestry of our lives. How could Sofia possibly be this amazing without your support? Your patience, your knowledge and your care have been invaluable.
We are thankful for your guidance.
To Sofia’s friends:
You have grown up accepting Sofia as one of you, recognizing that she is both unique and just like you. You welcome her for play, for hugs and for high-fives. You follow along with her funny dances and her big adventures.
We are proud of you and the future you will shape.
To the Down syndrome community:
None of us sought to be part of this community but we cannot imagine making this journey without you. Whether in person or on the Internet, with IRL (“in real life”) visits so infrequent but so special, you have been there to help us navigate the unusual journey it is to raise a chromosomally enhanced human being. We definitely could not have done it without you.
We are so grateful for your friendship and support.
To the differently abled community:
Also a community no one seeks to be a part of but can’t survive without. We share the joys and the heart aches of having unique needs. Together we will change the world.
We thank you for your perseverance.
To everyone who came from near and far to be with us today:
We thank you all for being here.
We are thrilled to be able to share our joy with you.
To our family:
Thank you. They say you can’t choose your family, so we are very fortunate to get assigned to you. We treasure your love and support.
We are so grateful to have you in our lives.
To our friends:
We grew up with you, we went to school with you, we sent our children to camp with you, we laugh, we joke, we have long conversations, both in person and on the phone. Your love has been a constant. You CAN choose your friend.
We are so grateful you chose us.
To our Temple Israel community:
Every week you accept Sofia as one of the kids in shul. You usually watch as she runs out door, but will happily help find her when we are searching. You cheerfully accept the candy that you just tossed, as our generous daughter forcefully shares her bounty. You don’t blink twice that Sofia is here. From the beautiful Baby Seder so many of you participated in until now, she has been a welcome part of this community.
We are so thankful to belong here.
To our MetroWest Jewish Day School family:
You raised us all. We are intricately bound up in the tapestry of MWJDS. We celebrated Sofia’s baby naming there. Sofia was a part-time student and is a permanent member of the MWJDS family. Our colleagues, our friends, students, staff and board members, thank you.
We are grateful for your support and inclusion.
To Sofia‘s teachers, therapist, counselors and coaches:
Since she was three weeks old, you have been part of the tapestry of our lives. How could Sofia possibly be this amazing without your support? Your patience, your knowledge and your care have been invaluable.
We are thankful for your guidance.
To Sofia’s friends:
You have grown up accepting Sofia as one of you, recognizing that she is both unique and just like you. You welcome her for play, for hugs and for high-fives. You follow along with her funny dances and her big adventures.
We are proud of you and the future you will shape.
To the Down syndrome community:
None of us sought to be part of this community but we cannot imagine making this journey without you. Whether in person or on the Internet, with IRL (“in real life”) visits so infrequent but so special, you have been there to help us navigate the unusual journey it is to raise a chromosomally enhanced human being. We definitely could not have done it without you.
We are so grateful for your friendship and support.
To the differently abled community:
Also a community no one seeks to be a part of but can’t survive without. We share the joys and the heart aches of having unique needs. Together we will change the world.
We thank you for your perseverance.
To everyone who came from near and far to be with us today:
We thank you all for being here.
We are thrilled to be able to share our joy with you.
About Down Syndrome
For centuries, people with Down syndrome have been alluded to in art, literature and science. In 1866, Dr. John Langdon Down first published an accurate description of the condition as a distinct and separate entity. In 1959, Dr. Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome; because of an extra piece on the 21st chromosomal pair, it is also called Trisomy 21. It is the most common chromosomal condition; about 6,000 babies with Down syndrome are born in the United States each year. October is Down Syndrome Awareness Month!
Torah Service
And then it was time for the Torah service. We had decided at the last rehearsal that Sam would hold the Torah while Sofia stayed at the amud (the readers table) to use the microphone and prop her book on the podium.
Sofia showed no signs of nervousness as she carefully said the words Shema Yisrael Adonai Eloheinu Adonai Echad. And when the congregation responded with the repetition of that phrase, a huge smile spread over her face as she realized the power she held!
Sam and the Rabbi transferred the Torah into her arms, and she proudly carried it through the congregation. Quickly. But she didn’t drop it, so quick was fine.
When the Torah readings begin, Sofia tossed Woody to me, and never wanted him back (I asked!). She also never left the bimah, although usually Torah reading is her prime bathroom break (I asked about that, too!).
The Torah readings were great. For the first aliyah, we had three readers. Back when I had been teaching Torah reading at MWJDS, and it was the Se’orah class’ turn to learn, one of the girls had protested that she was too shy to have her own bat mitzvah in front of so many people, and wanted hers on a quieter day. I explained that I wanted Sofia’s to be on Shabbat because the congregation has watched her (and this other child) every week, and everyone wanted to be able to celebrate with them, so she sighed and said, “I guess I’ll read Torah for Sofia’s bat mitzvah.” Of course, the other girls wanted in on that, so two of her former classmates plus another MWJDS friend split the first aliyah. My dear friend Brenda read second, and another of Sofia's friends was another reader. Three more of our adult friends rounded out the readers, and I did the last aliyah and the Maftir.
Sofia stood proudly at the amud. I had to coach her to take the corner of her tallis and kiss the Torah first, but she recited the blessing before the aliyah, and waited patiently while I read, then (with more prompting about kissing the Torah first) recited the second blessing.
Rabbi and Cantor recited the Misheberach blessing in English and Hebrew, and then I said a few words to Sofia and to everyone, and then David and I read a blessing. And then they threw candy!
My Remarks & Our Blessing
The evening we got our amnio results back, I wrote a letter to my not-yet-born daughter. In the letter I wrote “I worry about your Jewish education. How do I make sure that you feel the joy that the rest of us do about Judaism?”
Well, Sofia, everyone here can see that you most certainly feel as much joy as any of us. You have practiced so hard for this day, and we are all so very proud of you.
In your baby book, along with the letter, I found my remarks for your Simchat Bat, the baby naming we celebrated here at Temple Israel. These words all still hold true today, so it made writing remarks for today much easier. It starts with a poem:
Everything in God’s creation has its distinctive melody,
A rhythm and life-beat that it alone plays.
This is especially true of humanity.
Each of us has the song we sing in this world,
An evolving ballad that is uniquely his or her own.
Moshe Mykoff
Just as we celebrated your Simchat Bat here, we are so glad to be celebrating your Bat Mitzvah at Temple Israel, which really is our second home. We hope you are always surrounded by the warmth and love that fills this room today, with so many family and friends watching you grow. We thank everyone for all the caring and support you have always given us, and we are so glad you could all join us for Sofia’s second major lifecycle event. We look forward to celebrating many more simchas with each of you.
We are grateful, O God, for the privilege of passing along the gift of life which You gave us, thus sharing with You in the miracle of creation. We are grateful for the thirteen years of nurturing this life, for the unnumbered joys and challenges which these years have brought us. Praise to You, O Lord, for keeping us alive, for sustaining us, and for enabling us to reach this day.
Bless our daughter, O God; watch over her, protect her, guide her. Help her to continue to grow in body and mind, in soul and character. Keep her loyal to our people and to the teachings of our Torah. May her life be rich and rewarding. May all her deeds bring pride to us, honor to the house of Israel, and glory to Your name. Amen.
The Service Continues
Sofia's d'var was actually an adaptation of the text:
בְּרֵאשִׁית In The Beginning
Adapted by Alison Greengard, Illustrated by Carol Racklin-Siegel
In the beginning, when God was making heaven and earth, God said, “Let there be light!” And there was light. God called light Day. God called the darkness Night. It was evening and it was morning, the first day.
God said, “Let there be space in the water.” God called the space Sky. God said, “Let the waters gather in one place, and let dry land appear.” It was so. God called the dry land Earth, and God called the water Seas. God saw it was good. It was evening and it was morning, the second day.
God said, “Let the earth grow plants.” It was so, and God saw it was good.
It was evening and it was morning, the third day.
God said, “Let there be lights in the sky!” It was so. God made the big light to rule the day, and the smaller light to rule the night, and the stars. God saw it was good. It was evening and it was morning, the fourth day.
God said, “Let the waters be filled with fish, and let birds fly above the earth.” God saw it was good. God blessed them. It was evening and it was morning, the fifth day.
God said, “Make animals on the earth.” It was so, and God saw it was good. God created people in God’s image. Male and female, God created them. God blessed them. God saw all that had been made, it was Very good.
It was evening and it was morning, the sixth day.
The sky and the earth and everything were completed. On the seventh day, God finished all the work of creation and rested. God blessed the seventh day and made it holy. It was Shabbat!
We had her murals, created with her religious school teacher last spring, displayed in front of her while she read.
Micah chanted the Haftarah.
Sofia’s MWJDS classmates plus one other friend all joined her for Ashrei. She stood at the microphone and tried to say the words along with them (that will be what I teach her next). It was one of the few times I got teary-eyed, seeing all of them together. After a speedy Musaf service came the speeches. “Hamorah Margalit” Gretchen made the presentation on behalf of the synagogue, and that brought me to tears. She and Sofia have a special rapport from their year working together. And it was very sweet: Gretchen pointed to the large gift (the chanukiya from the Gesher class) on the amud and asked Sofia if she knew who it was from, and Sofia promptly replied “Sophia P!”
Kendra made the presentation from USY, and she was so sweet and poised and adorable with Sofia. It was very touching to see them together, too, because they really have a special friendship.
The rabbi’s brief remarks to Sofia were equally special, as was his own d’var at the end of the Torah service.
Sofia loved standing for Adon Olam, and then Lilie joined her for kiddush (because of the time, Cantor actually skipped V’shamru!). Lilie reached for the kiddush cup, and Sofia smoothly grabbed it out of her hands! They recited kiddush together, and Sofia loudly recited al netilat yadaim and hamotzi.
Lunch
As usual, we rented long tables and turned the Social Hall into some sort of fancy beer hall (minus the beer) as we tried to seat more than 300 people. We were very fortunate that the weather was lovely, so we also had round tables set up in the courtyard for overflow. It took people a long time to get through the buffet, even with 8 lines. The food was delicious. Phyllis (the caterer) really outdid herself. Amazing brisket, hot turkey breast, tzimmes, chicken tenders, meatballs, hot dogs in sauce, wild rice, and antipasto salad with lots of veggies. There were also egg rolls, meat knishes and potato pancakes in the hallway. Yum.
We didn’t leave until about 2:30, happy, full and exhausted. Back at home, I did a couple of last minute preparations, curled Sofia’s hair again, and took a short nap. Then it was time to dress and head back for the party.
Party Time
Sofia and I got to shul around 6:30, with the rest of our household arriving shortly after. The DJ was did a sound test, the catering staff was still setting up, and it was a bustle. But by 7pm we were ready and people started arriving.
We had adults out in the hallway for hor d’ourves, kids inside with the DJ for quiet games (and nachos). Around 7:30, we all gathered in the Social Hall, and eventually we got everyone to quiet down for Havdalah. The five of us all held candles, I held the microphone (and a spice bag - left over from Micah’s bar mitzvah!), while David held his candle and the kiddush cup.
Right after Havdalah, we went into the Horah. Sofia was SO excited to be the center - literally. She would not let any of us dance with her. Instead, she just stood in the center of the many circles, enjoying the feel over everyone dancing around her. And when it was time for the chair lifting, she was overjoyed. We had both boys and then David up on chairs. When it was mom’s turn, I said “nope” and hopped up to stand on the chair while it stayed safely on the ground.
I had told the DJ company “no light show” so they did not bring any colored or flashing lights. It was a good decision. The natural lighting of the room - either dimmed for quieter times or full strength for wild dancing - was much more sensory friendly. We had a whole table of parents sitting near the kids, and I was overjoyed to have my DS mom friends with me. The kids were all amazing. The various groups (school, shul, MWJDS, specials) overlapped and got along so well. Everyone was super sweet. Sofia’s school friends were very attentive to her, and everyone danced.
I mean EVERYONE danced. The DJ did a great job of getting everyone up (at one point we had a giant conga line snaking through the room), and so many of us are dancing machines anyway. I loved having all my wonderful girlfriends with me (MWJDS gang, DS moms, Brandeis crowd, and so many others). Sofia loved loved loved being the center of attention.
And she looked gorgeous. Sweet and lovely, with the fancy dress we’d gotten nearly a year ago, and the fun blinged-out sneakers. The only grumpy moment was when she got hungry, but I got her some chips and she was fine.
The DJ mistakenly sent 187 people to the dinner buffet at the same time (I spoke to him about it afterwards), but otherwise he did a good job of getting people moving. I did bring a box of ear plugs, which turned out to be a very good idea. The kids loved all the prizes the DJ handed out.
It was just simply perfect. Sweet and fun and amazing.
At 10pm, the ice cream buffet was out and we played the slide show. Sofia sat front and center (and told me to go away). With each song in the montage, she sat (cake plate in hand) singing and doing the arm motions. She was enchanted. I loved watching her friends recognize themselves in the photos.
After the Party
The party officially ended at 11pm, but it took us an hour to get the cars loaded (mine, David’s and A’s) and get out of there. Sofia was so tired, and wanted to “go home, put on pajamas, and in five minutes, sleep.” We made it home a little after midnight, and I sent her off to bed. The rest of us sat (on the kitchen floor, for some reason), talking while I opened her cards. (I promised she could open the physical gifts on Sunday).
Sunday, October 7: Buddy Walk
We weren’t done yet! David went back to shul for minyan Sunday morning, while I got us ready for the Buddy Walk. I packed up a variety of leftovers, plus the 55 t-shirts I had prepared. Sofia, Micah and I left the house at 10, and got to Wakefield right at 11. We managed to get a terrific parking space right near the corner where I wanted to set up, and got everything loaded onto the green. Then we had about 35 minutes to relax; I read my book while Sofia watched a movie on her tablet and Micah did some homework. People finally started joining us. Occasionally I would take a walk over to the festivities, but really, we were just all so tired!
Around 1:00, I took Sofia over to see the princesses: Elsa and Anna, Evie and Mal. She enjoyed that a lot, and it took some time to get her back to our picnic area.
The walk started at 1:30, and as usual, it took a while to get moving. My feet were killing me. While I had a nice time talking to my friends, by the time we hit the bus stop, I couldn’t go any further. I took the shuttle back to the Common, and relaxed with C. (who had stayed behind to guard the stuff). We had a nice conversation.
Everyone finally came back, we snacked and shmoozed, and then said goodbye. We had to stop and get my eyeglasses fixed; somehow I lost one of the nose pieces! Back home to eat, clean up and get to sleep… after watching Doctor Who, of course!
