My LIttle Ambassador

Thursday afternoon, Sofia and I had the extreme pleasure of welcoming a new family into the Down Syndrome community. Little A was born last Friday. Mom has known since 11 weeks that this princess would have "designer genes", and we spoke about 6 weeks ago. Kindred spirit, this one.

So we visited, these otherwise complete strangers, now part of the family. SUCH a beautiful baby. (I know, all babies - and brides - are beautiful, but certainly some more than others, and from what I've seen, our little "specials" are extra beautiful when they arrive.)

Sofia loved the baby, but settled for exploring older sister's toys. I got to hold the tiny package (although she was bigger than any of my three kids at birth!) the whole time. Scrumptious!

I love this part, showing off Sofia, who certainly 'shows' well, and talking to new moms. It's certainly not something I'd ever planned on doing, but boy, am I glad I have this opportunity!

And talking to the mom is bringing back all sorts of memories of our first year or two with Sofia (both in utero and out). Like when my friend A didn't realize until Sofia was almost 18 months old that Sofia had Down syndrome - and this was someone we saw nearly every day! Or when our friends joined us for the Buddy Walk but the kids - who had vacationed with us that summer - wanted to know if there was something wrong with Sofia that we needed to Walk for.

She's busy destroying my clean house now. I can only barely remember life before this amazing child arrived. I'm so madly in love with her.

Things get better

Well, after the mishegos (craziness) of needing to find an aid for Sofia for camp, it all worked out. The college student who interns in Micah's class was available. Sofia was so much happier to have a grown-up instead of a young teen. So it was a better day. And after I vented to the principal, I also had a nice talk with the admissions director (who is the one who said my daughter was a two-man job). We're old friends, so we were able to hug and make up.

Sofia loved loved loved camp, but was sooo tired each afternoon. She's not yet used to a full-day program. I LIKE it! (evil mommy)

Friday night was just about the best Shabbos dinner ever. We gathered with 4 other families (all from the day school) at my friend H's house. H has a great big house, but does not love to cook. The rest of us love to cook and have small houses. So we brought the food there. YUM. Salmon, quinoa, salad, homemade hummus and challah, and I made a birthday cake and cookies in honor of H's birthday. And the kids had a BLAST. Sofia's two best friends, the ones she talks about constantly, were part of the gang, along with 2 kindergarten, 1 first, Micah and E in second, one third, and 3 in fifth. Fabulous.

The dynamics of the kids was especially adorable. Micah and the kindergarten and first grade boys barricaded themselves in the basement with a sign saying "NO GRILS ALLOWED" (we promised not to bring cookware...). Sofia and her buds played and played. And Sam and the girls...painted their nails. Really. I don't think Sam did his own nails, but he was definitely giving manicures to Sofia and the kindergarten girl.

Meanwhile, the grownups settled in the dining room and talked and talked and ate and drank and talked. The ladies all decided we really wanted to live in a commune together; the men weren't as keen on it.

We got home very late, so slept in on Saturday. I didn't get out of bed for real until after 11 (not counting making Sofia breakfast at 6:30...). Hung out all afternoon. David went into the office for a while, I took Sofia for a stroll around the neighborhood, checking out flowers. When David got home, we all went to the playground, joined by some neighbors. Evening brought dinner at Samba, a favorite Japanese restaurant.

Sunday morning was movies. David and Sam saw "Clash of the TItans" (Sam liked it, David thought it was terrible). I took the little ones to see "How to Train your Dragon." It was very cute, although I missed a few key scenes while taking Sofia on 7 trips to the potty. (But most of them, she really did use the potty!).

Gorged on popcorn, so no lunch. Home to clean and work, and David had both boys sobbing after a lecture on cleaning the house. David had to pack, left for Germany that night. I got fancied up and went to Seas The Dream, the fund-raising gala for Jewish Family Services of MetroWest. Really nice event. Very moving speeches, and great food. Plus more time with my friends.

Single-parenting this week, but with lots of babysitter assistance. Monday night I went out with two friends to Boston! Light dinner, and then to the Noa (Achinoam Nini) concert. Excellent.

Yesterday I was EXHAUSTED. Kept falling asleep in the car (while parked!). Early to bed, glad LOST was a repeat.

Better today, except for being camped out at Toyota. The electronics on the passenger slide door don't work.

This weekend is Mom's surprise party - except that her cousin EMAILED her saying "looking forward to seeing you at your party, but we lost the invitation and need details...". Argh. But Mom said she'd strongly suspected, anyway, and she still doesn't know any details. So it'll be nice.

Like a Punch in the Stomach

I guess in the grand scheme of things, it's really not so bad, but given the cloud of unreality my family seems to float in, this was reality knocking hard.

This week if school vacation for the public schools. The boys had vacation during Passover, so they have school. And their school also runs a Vacation Camp, for ages 4-8. Which Sofia is attending, for the second year in a row.

We learned last year that it would be wise to have a dedicated Aid for Sofia, since she is so comfortable with the building (and with walking away). Co-incidentally, a high school student from our synagogue was looking for volunteer work last year; the match was perfect.

But last year Sofia was much less active and much less willful and MUCH less stubborn.

So This year, not only is R doing the Aid bit again, but we also have some former students (my friend's daughters, who now are in public school), helping out.

Yesterday, they only lost her twice. She's very small, very fast, and very agile.

Apparently, today, the two girls together (ages 11 and 15) could only barely handle Miss Sofia. Sam said they enlisted him and his friend A quite a bit during the all-school events.

Sofia is a Force Of Nature, to be sure. She is a whirlwind of activity, and when she sets her mind to something, no amount of discussion is going to dissuade her. And she loves that school and that building - and knows every nook and cranny where she can fit her athletic little body.

Sofia was exhausted when I picked her up at 3:00 (neither of us had slept all that well last night, due to pollen allergies). So I got her settled in the car, and we picked up Micah at 3:15 to race off to an appointment (Sam stayed for tutoring; I had to come back later for him).

As we were pulling out of the parking lot, I was flagged down by our Recruitment director, who is also in charge of organizing the Camp.

"We have two teens for Thursday, but Sofia is really a two-man job, and we only have one on Friday. Do you have anyone you could bring in?"

Oh, I know they WANT her there. But it took my breath away, to confront the DIFFERENCE between my daughter and the other kids. And this includes at least two other 6 year olds with Autism, who do NOT have their own Aids (but both of whom I had to stop from leaving before their rides picked them up today).

After many flustered phone calls, we finally got someone - the college student who volunteers in Micah's class. I think Sofia will be much happier; apparently she was also not so pleased with the 15 and 11 year olds bossing her around. When I picked her up, she demanded our sitters, E and A (both graduating college this year [yikes!]). Reports are than any time a grown-up was in the area, she would stand next to them instead of by her teens.

But it made me frazzled. I mean, I handle her by myself every day. I KNOW she is tough. But she's not impossible. So I mentally realize that we've set the situation up for failure, putting these young kids in charge of her. The 19 year old who is the assistant director did much better with her, but had many other duties to attend to.

Ok. I've vented. I feel a little better. And the situation is ok. We're covered for the next two days, then she goes back to school. And we have "Behavior" as a whole page on her IEP!

Today was also busy because I had a hair appointment and then had to race into Brookline for a funeral. My friend's mother-in-law passed away, the third in a string in that family (her brother last year at this time, and her father 8 months before that). So sorry for that family.

I'm surrounded by children right now, which is not so good since it's 8:28 on a school night. GET TO BED!

Social Reponsibility

I received a very unexpected letter this afternoon, from the Provost of Hebrew College (where I will be getting my Masters degree in June):

I am pleased to inform you that you have been awarded the Wendy R. Breslau Citation and Award for demonstrated social responsibility.

Coool. And thought-provoking.

How have I demonstrated social responsibility? I always thought that "Social Justice" had to be purposeful. Sam's teacher is also the Social Justice coordinator for the school. For Martin Luther King day, the students had a clothing drive; in May, they will participate in Mitzvah day with one of the local synagogues.

While I'm always pleased when the kids are given the chance to participate in events such as these, I also get a little disappointed. Last year, I got into a heated debate with the Family Educator about the value of "Mitzvah Day." (Mitzvah in this sense you could translate as "good deed" - it's a bit deeper than that, but it'll work for the conversation). I had a sinking feeling that designating one special DAY to doing a good deed would make it as if you could be off the hook the rest of the time.

What we are trying to instill in our children is the idea that every day, in fact every moment, can be an opportunity for social justice and social responsibility. Have I succeeded in demonstrating that? I guess I have, enough to win an award. But I don't think I've done enough. I think I still need to strive to do more. I think we all do.

Is being friendly and positive being socially responsible? Well, yeah, I guess. But certainly that's not enough

Is offering helpful information being socially responsible? I suppose as long as the information is needed and correct, yes.

Is just being proud of my kids and being vocal about that pride being socially responsible? I guess maybe in my case it could be, as my children morph from individuals into EXAMPLES of children with ...

Am I pleased that I won an award? Yes. It's nifty. And I'm proud.

Am I embarrassed? Yup.

Do I feel that I've done enough to deserve this award? No. I don't think I'll ever feel that I've done enough. And I hope I instill that value in my kids.

At the Passover seder, it is traditional to leave a cup of wine for the prophet Elijiah. It is said the Elijiah will come to herald the coming of the Messianic era. "While in most homes, the seder leader fills Elijah’s cup from a bottle of wine, the Hasidic sage, Rabbi Naftali Tzvi Horowitz, insisted that every participant around the table pour some wine from his/her glass into the special cup of redemption. This symbolizes the need for each and every one of us to participate in the healing and transformation of the world." (from the Tents of Hope Seder Guide: A Passover Seder for Darfur).

I firmly believe that each of us has a part to play in healing and transforming the world, and that part is not just a one-day walk-on. It is something that should be part of our very being, part of our daily routine.

Good Shabbos to all...

Ahhhhhh, Relaxed

Yes, impossible as it may sound, I actually RELAXED this weekend!

Of course, first I started out with Friday's Great Tire Fiasco, and two extra kids, and a husband freaking out about which medical bills have been submitted for reimbursement.

But Saturday at 9:30 am, I was packed and out of the house. Nice drive - in the grown-up car, of course - on a very easy and mostly empty road (395). Arrived at Foxwoods by 11am.

Too early to get into the room, so after I checked us in, I parked and took the shuttle over to the main buildings. Met up with my friend C, who was there with her husband, kids, and her parents and her mother-in-law. Apparently lots of Comping involved. Cool.

Walked with them a bit, and then headed over to the Spa at the MGM Grand.

I would like to MOVE INTO the Spa at the MGM Grand.

I would like to LIVE THERE.

REALLY.

Let's see. First I got into my assigned robe and slippers. Took my book ("Radical Judaism" by Rabbi Arthur Green) and sat in the sauna for a bit. Dunked my feet in the hot tub. Sat poolside (indoor pool, but near a bit of a breeze from outside).

SLEPT.

SOUNDLY.

So soundly that when C came to bring me her spare bathing suit, she could not wake me up.

Really Soundly.

Woke up about an hour later. Refreshed.

Found C, who made me come work out with her before she would surrender the bathing suit. So we did the ellipticals. Which were waaaay cool because I could plug my iPod into the machine and have my movie show up on the larger screen of the elliptical. Nice. I can handle that.

Back for a dip in the cool pool, then back to sauna and hot tub. Shower and dress.

NICE.

Met up with C and her family for lunch (THANK YOU DAD!), and my college chums caught up with us there (they were the people I was really supposed to be with - I didn't find out that C and her family would be there until Thursday).

So now it was me, R, S&S, and we took the shuttle back to our room, rested a bit and then dressed for the evening. Drove over to Mohegan Sun. Which was PACKED. Mobbed. Very Crowded.

We were going there in order to see the free concert by Todd Rundgren in the Wolf Pit. But when I arrived, at 6:20, there were already about 250 people in line.

So I waited. And the girls waited around me. But ultimately, we were about 20 people away from the door when they finally (at 8:30, half an hour after the concert started) let us know it was totally full.

Sigh.

But fortunately you can hear the entire concert quite nicely from outside the Wolf Pit, so I hung on the railing by the door for about an hour. However, the girls had had enough, and took off to eat dinner, so eventually I met up with them at the buffet. So I had to miss half the concert. But I'm glad I saw and heard as much as I did.

Hung out at Mohegan until about 11:30. I had to drive us back in S's car because her leg was hurting badly (childhood arthritis, very severe). So I drove this boat of a Grand Marquis. Ok, I'm getting spoiled by my husband and our addiction to Top Gear. Can't believe I drove a Grand Marquis. Reminded me of the tank (aka 73 Ford LTD) I drove in high school.

Since I'd slept so nicely in the afternoon, I stayed up late working on the yearbook (love my laptop!), but we all slept in this morning. Breakfast buffet at the hotel, then back to the main casino at Foxwood. S was the only gambler, really. The rest of us did a few $0.25 slots, won a tiny bit (I'm up about $17 total). Mostly we walked around and shopped and people-watched.

In the MacAppeal store, where I'd gone to get a free flash drive by buying the software I had intended to order online (upgrading iLife on the desktop machine), I ended up playing Apple Genius for a nice Indian gentleman who had no idea how to use his iTouch, and who then wanted to know what computer to buy. It was fun.

The girls left around 3:30, and I had a salad back at the hotel and got a lot more work done on the yearbook before driving home.

Kids climbed all over me when they saw me. And Sofia got bounced into the corner of my desk; she's gonna have a black eye tomorrow. Poor baby.

Ahhhh.

Finally, a New Blog Post!

Sorry it's taken so long. We did not have Internet at the apartment in Florida, and I never really had a chance to go sit at Panera and type.

Florida was busy, but fun. Sunday when we landed, we stoped to see my grandmother for an hour, then came down to the apartment in Hallendale. Had to go shopping for cleaning supplies and dust the whole place. I also went to Kosher Kingdom in Aventura, erev-erev Pesach. It was INSANE.

Got groceries, got the apartment set up, and settled in. Monday we went to my friend Brenda's for a while (friend since 7th grade), then came home to prep for seder. First seder was at her cantor's house. Florida seders are a lot more laid back than Massachusetts seders. The seder was on the Patio, with the swimming pool standing in for Red Sea. A little disorganized, but nice people and delicious food.

Second seder was at Brenda's, also more relaxed, lots of people, lots of kids, lots of fun. And I finally got to meet Dori and Aviva, who I have known online since I was pregnant with Sofia!

The rest of the week was a whirlwind. Swimming in the pool and at the beach, shopping, playing, resting, visiting. Sunday morning we drove up to Disney, went to Epcot one day and Magic Kingdom the next. I saw more adults crying at Epcot than kids...

Stopped on the way back from there to see Mike & Tracy - I've known Mike since 7th grade, too, and it was great to see them.

Tuesday was lots and lots of laundry and packing up the apartment. We bought a lot of sheets and towels, so hopefully we'll be back soon!

I put a photo page up here.


Got home midnight Tuesday, took kids to school with glee on Wednesday. Last night, David and I had a chance to get together with friends, which was very fun. Today, just as I was driving back to pick up Sofia from preschool, I got a flat tire, and spent the next 5 hours waiting for two replacement tires and a rotation and alignment. Thankfully David picked up Sofia and brought her to my friend's house, and same friend picked up the boys.

Now we are home. I also have 2 extra kids tonight, but for now everyone is relaxing. I'm off to Foxwoods tomorrow with college chums, leaving David with the kiddos.

Many profound thoughts to share, but I can't think straight now...