phone calls

Regina? It's Gimky.

Hello, Gimky. Thank you for calling but I am very tired.

I know.

I had a very bad night.

I'm so sorry.

You want to come?

Yes, but I can't until Monday.

Mm Hmm.

I'm coming on Monday morning.... You'll tell me if I can bring something from your apartment.

I cannot think about it now.

Okay.

Silence.

I wish it wasn't so hard and that you didn't have to... suffer.

Silence.

I love you Regina.

Okay. Bye, bye.

Bye.


The florist had asked me earlier "What message should I include?"

"We love you... and...." I hesitated.

"Happy New Year...?" he suggested.

How macabre.

"Just 'we love you' is fine."

Re: Hello

Hi again, Gimky,
We just returned from seeing Regina and she was very relaxed. She even tolerated with good grace, a visit from a lovely Christian chaplain, originally from south India.

She told him there is good and bad...good, it is a lovely place to be and bad, she can't speed up the end.

Judging by today's performance, I think she will be up for a visit when you are back in gear.

Happy New Year.

PD

wait for me!

I'm on my way back from Orlando with the worst cold I've ever had.

I would love nothing more than to go home and curl up in bed with a cup of tea and a box of kleenex. Instead, we are hopping in the car and driving directly to Canada, where we will ring in the new year with my husband's parents, his 4 siblings - in from around the continent - and their children. We are the last to arrive and they are waiting on us. I am grateful for our families, but this extreme dose of social obligations has been exhausting.

I am waiting to hear from PD, who is visiting Regina in hospice. I cannot reliably get to Queens, today, with so many roads still impassable from the storm. My hacking is not something I want to share, either... But can she wait for Monday?

moving

Wasn't able to reach Regina yesterday or today. Just received word that she's in the hospital and will move to hospice soon.

Albert, our friend, sent an email: "She feels very bad and doesn't like to hear that she 'sounds good' when you speak with her."

This particular comment made me laugh out loud. She is true to character to the very bitter end.

She is a survivor and a fighter, the most down-to-earth, people-intelligent, well-read and stubborn person I know. She lost her entire family at age 18 during the war. Her life was spared because she followed a boy she had fallen in love with and walked from Poland to Russia with just a rucksack on her back. They came to the US only because France and other countries would not take them in. She was self-educated and lived modestly in NY. She was a student of the world and loved music and literature. She followed world and US politics religiously and could impressively hold her own on even the most difficult subjects.

Mostly, though, when I think of Regina, I think of her as a doer, of truly salt of the earth stock, someone with a huge heart. She ran a soup kitchen on the upper westside for over 2 decades, and even went back to volunteering there this past September when she was feeling better. (She has cancer and is 92 years old.) She took care of her own friends when they were sick, most of whom are no longer alive. She didn't just flap from the mouth, what most people do these days, she tried to make a difference. She put herself out there, everyday, to make this world a better place. There's no bullshitting, no pretending with her. And certainly no telling her that she sounds good when she doesn't! And that is Regina for you.

making up

At breakfast, I prepared a roast for Christmas dinner. I don't celebrate this holiday, but my family does and I like any reason to cook. My mom pointed to the rub and asked, "what's that?" It was her first direct question to me since her visit to NY.

"Remember? I made this at Thanksgiving," I replied, prepared for her to tell me that she couldn't eat it.

"I know, it was good," she commented. "What's in it?"

And with just this little exchange, I knew that my mom and I were okay again.

I later called Regina.

"How's Florida?" she asked.

"You know," I said, rolling my eyes, "it's Orlando..."

We talked about Thanksgiving. It had taken serious storytelling to convince Regina that the car service I ordered to my house was free. (It wasn't.) She came all of 3 hours and it meant a lot to me. She ended the evening with a cup of tea in her lap as I played Rachmaninoff for her. It was just like old times.

"I'm going to call you, tomorrow," I told her before I hung up.

"Why?" she asked.

My heart sank. Mrs. Abramsohn had asked the same thing! I couldn't answer, not yet.

"Because I want to," I told her, "I'll talk to you tomorrow."

message

"Gimky, the nicest thing you can do is tell Regina that you'll choose some of her books. That would mean a lot to her. We have spoken about her affairs. Her current situation is untenable and we can only hope she will agree to hospice soon."

P.D.

Oy

The cancer has spread. She is nauseous and sick to her stomach, diarrhea every 30 minutes.

"Gimky, you will come to my apartment and take what you want. Prepare yourself."

"I am not ready for this," I said into the phone as I began to cry.

"When I get back, you should know that you can come to me," I started.

"I can't! I told you, I have diarrhea every 30 minutes! It's impossible!" she cried impatiently.

"I'm trying to tell you that you can come live with me. I have a very big ---"

"STOP!! I am going to hang up on you," and now she was practically yelling, "I am sick to my stomach, I can't even answer the phone... just please don't."

"Regina, let me just say it ONCE! Listen. Listen to me," I raised my voice back at her. "I want you to know. I want you to know that you can come and live with me. I am home a lot and you won't be alone."

"Okay. You said it, but I won't come and I never will. Okay?" she declared.

"Okay," I replied as I stifled tears.

"Good bye!!" she said as if she were hanging up on me. But I noticed that she waited for me to hang up first. And this is why I love her.

Yelling

I am not a yeller. I grew up with a parent who yelled a lot and it was not fun. I am not a yeller. These past few days, though, I have been yelling at my kids and short with my husband. I am frustrated with my boys for not behaving themselves, mad at Jake for time and time again forgetting and losing things. I barely recognize myself.

I've had some days to reflect. My kids are square pegs in a world of round holes. I actually like square pegs, most of the people I surround myself with are square pegs. But when these square pegs are your own children and still young, it's a priority to help them fit in and conform to a certain extent. It's weird and a little disheartening to think that my kids might have more difficulties assimilating than me and my sisters did, daughters of immigrants.

It seems obvious to most, but some situations call for a little yelling. Yelling is not always a bad thing.

Regina

Regina is sick. She's been to the hospital 3 times since she came to Thanksgiving. She has refused to let me visit and goes into a controlled rage when I suggest that she stay with me until she feels better. She even refuses for her son to come. In her mind, we are not casual visits and she does not want the burden of keeping up appearances. She is a proud woman, but she is also not well.

Tomorrow, we leave for Florida. We purchased air tix in July with the intention of visiting my parents down there. My boys have been looking forward to this trip forever, but my mother is still not speaking to me for reasons unknown and frankly, I don't need this trip.... I am worried something will happen to Regina while I'm gone.

Tonight, I go over there unannounced with groceries and prepared foods. She will be so upset to see me, though the Regina I know would respect me for not listening to her.  I want to see for myself.

Not crying

Last night, the Rabbi who married us came to visit and spend the night. She was in from Israel for a conference in NYC. To be honest, my husband and I preferred to meet in the city. Hosting an overnight guest you are not chummy with can be exhausting. But it turned out that none of our schedules could conveniently align and it was just easiest for her to come for dinner and stay.

She arrived by train. We had sushi. We chitchatted over tea and watched my boys roast marshmallows in the fireplace. We looked at her family photos. We went to bed. That night, I wondered if she noticed anything amiss with Belac. A long time ago, I mentioned that something was up with Belac. It also came up that we recently moved here for the school. We didn't talk about any of this.

The next morning was a whirlwind. Jake had his class play first thing and I had sound and lights to cover. Belac had a drawing that did not come out just so and had a total meltdown. I was later running a Christmas program at my school and had dressing up and my face to do. As my husband walked the kids to school, I had 20 minutes.

"Belac looks like he's doing well," my friend began awkwardly, "does he have any particular strengths?"

We started talking. We ended up in the basement, where I dug out Belac's artwork and books he had written. "Look how he expresses himself," she observed as she looked carefully at some of his pages, "Gimky, he's going to be fine."

"I hope so...." was all I could say.

As we bundled up to go, I answered her questions. I elaborated nonchalantly about the past few years. "Oh my God" she exclaimed quietly when I told her about the kinds of expenses and stresses we've had. She was even quieter as I told her how alone we once felt and how I continue to worry about not just Belac but Jake, too.  "I remember you wanted a house full of kids, do you ever think...?"  I was taken aback. Did I really tell her these things? I interrupted her, "I can't... there was this tumor...  And I'd worry about having another with challenges...."

I heard myself rambling as she listened to me in full attention. Before I knew what was happening, I felt tears rolling down my cheeks. "It's a miracle that we're here and doing okay," I reassured her as I focused on snapping up my coat and pulling myself together.

I was now very late. We hugged goodbye as she got into my husband's car. My husband did a double take and asked, "Gimky, are you.... crying?"

"Me?" I said, feigning shock and wiping my eyes, "Definitely not." And with that, I ran off to school.

Song

Belac 12/2010

Flip

Belac 12/2010

Belac has made over 500 videos on Photo Booth. Some of the clips are just great and I love listening to him talk and sing. (And he loves looking at himself, too.) The videos have involved being stuck in front of the computer, though, and is a pretty solitary pastime. After much discussion with my husband, I went out today and bought a portable recording device.

I hypothesized that something mobile like the Flip might encourage Belac to be more interactive with the world and people around him, given his interest in video-making. I introduced the Flip as an "interview machine" and a way to record interesting things. (He needs to practice asking questions and being interested in others in more socially conforming ways.) I also believed that I could use the Flip to catch Belac in good and bad behavior and later show him. In short, I thought it could be a great teaching tool.

I took the Flip out of the box and interviewed Belac. We played the video immediately and I showed him how the buttons work. And then off he was, interviewing first me, my husband and then his brother. (Using mostly my words.) He also made a video about the toilet and caught Jake and Allie's son singing an absurd song about Thomas the Train. Now he has gone off to Will and Allie's next door to play. I suggested he interview each person and offered up a bunch of different topics to ask about. 

"Are we sure we want him bringing this 150 dollar thing out, where it could get broken or lost?" my husband asked, as I watched Belac run into their house.

"Well, it's kind of too late and he's already over there. There IS a 1 year warranty.... Let's just see what he brings back...."

love notes

Belac 12/2010

I've become fast friends with a mom at Saturday swim. We began chitchatting 12 weeks ago as we watched our boys swim. One day, it just came out somehow that we each had a son with an IEP. We continued to speak freely about all sorts of things. In fact, I found myself talking with her about things I don't even talk about with.... well, most people I've known for a long time.

Today, she came over after swimming and we let our boys play. Again, I found myself bewildered at moments, wondering to myself, how can I be talking like this with her? She told me things, too. At one point, she mentioned how her two boys gang up on the one and it was just so hard.  This was in stark contrast to our first weeks, when our lives looked to each other to be picture perfect.  I asked as she left, where do you fall among your siblings? In the middle, she replied. Well that explains it, I thought. I am middle born, too.

Am I reading too much into this? But there are 2 other middle-borns that I also relate to like this and they happen to be my closest friends. Is it just coincidence that we all fall in the middle and happen to get along well?

I have a cousin who is obsessed with birth order. We spent a lot of time talking during his messy divorce and I was subject to plenty of his rants then of how he (a first born of 4) should have never married another first- born. He was convinced it was contrary to natural order and recipe for disaster. I would never choose a spouse or friend based on birth order, I told him, and felt other things mattered more. But then, in thinking back to any boyfriend or love interest I ever had, I was astonished to realize that every single one was first born. I was shocked to think that I had a 'type.' The man I married also turned out to be first-born.  My youngest sister had only dated "only"-children until she married her husband, a first born. Interestingly enough,  every man my first-born sister ever dated was also first-born. None of those relationships resulted in marriage and she remains single today. Every time she meets someone new, nowadays, she exasperatingly -because she knows I'll ask- describes the guy to me with his birth order in the first breath.

I sometimes wonder who my children will choose for partners later in life.  It sounds crazy, but I hope that Jake, my first born, doesn't become smitten by a bossy prince or princess - youngest child who smothers him with impossible demands....  And can I say something completely un-PC and potentially offensive? I have sometimes felt that if Belac could find some stable profession, that he could possibly partner up with someone F.O.B.  a la Steven M. Shore or my former piano teacher. Those from Asian countries tend to appreciate demonstrated stability over a lot of talking and promises....

I bring all of this up because Belac has decided he wants to marry a girl in his class. Her name is Lily, a little red-head that lives down the street. He has been begging to have her over for dinner and always wants to look for her on the school yard before we go home. He drew her a picture and sent the sweetest letter. He's seven, remember. I asked why he wants to marry her. "I just love her and want to marry her!" he exclaimed simply.  Where in the hell did he get such an idea? I suggested that we start with a play date. I advised him not to smother her and reminded him that he's not allowed to hug or touch her without permission.  My friends tell me this is all just cute, but I just cringe thinking about either of my boys - and especially Belac - navigating romance when they're both just learning about the nuances of  friendship.... I know there is a 'natural order' to things but I'm really not ready for my boys to grow up. Life can be so hard. Could we just stay at this age forever?

my moe

Belac 12/2010

Tonight, during dinner, Jake asked to make a fire in the fireplace, insisting that he could do it by himself. "I don't know, Jake, you're going to have to ask Dad," I answered. We called my husband by speakerphone.  "I want Daddy," Belac said into the phone, "I want my family."  "I'll be home in 30 minutes," my husband promised.

Soon after arriving home, my husband's boss called and pulled him away. After putting the kids to bed, I checked on my husband, who was still in heated discussion over a presentation he's preparing.

My husband has been going on like this, non-stop, 10-12 hours a day, everyday, for weeks on end. On Sunday night, he came to bed with a sigh. "Gimky, again I feel like today was Friday and tomorrow is Monday...." In seconds, he was snoring away.

I am certain my husband would have quit this job, long ago, were it not for all of us, where we live, and our expenses.  In another life, he'd be an awesome college professor... not that that profession doesn't come with its own set of stresses or that it couldn't support the equivalent life somewhere else. But I believe that academia would have suited him well, certainly in a healthier way than the corporate life. The fact is, we live in the suburbs of NYC and we have children, one with needs. As long as we are here, we need my husband's job and especially in this crappy economy, we appreciate it all the more.

My husband is the most reliable, unselfish person I have ever met. I have never worked as hard and as consistently as he or taken on each responsibility with such gravity.  He is fair, reasoned and generous, but not overly so and that is important to me, too.  He has a backbone, whereas mine sometimes goes missing. Despite the fact that my father and husband have much different personalities, they are the two people in my life I know to be the most highly self-disciplined and motivated and always trying to do the right thing. After 10 years of marriage, my husband still bends over backwards and drops everything to make things right with me. He thinks the world of me even when I'm not entirely deserving. We would not be where we are today were it not for my husband and I am seriously one lucky girl.

simplifying

Belac 12/2010

2 years ago, when we put our old house up on the market, we gave away 1/3 of our belongings and split the rest between our Sunny Patch rental and storage.  We moved for the public school that had a strong track record for educating both neuro-typicals and kids with needs.

Our rental was sweet, but there were only 2 small closets in the entire place and no basement or attic storage. It was like living in NYC again, milking every inch of space. My husband and I slept in - essentially - the laundry room.  4 bikes were stored at the top of the staircase.  All year long, we continued to shed belongings and bought very little. Mostly, we were trying to hold onto any equity and cash we had, but where would anything extra go, anyway? The lifestyle became ingrained in us. No unnecessary knick knacks, no hoarding.

Eventually, our old house sold. In August, my husband and I had the extreme good fortune of closing on a house in Sunny Patch.  Just before Thanksgiving, we unpacked our last box. 

A friend came by for dinner, one night, and wanted to borrow a sweater. "Gimky," she exclaimed with almost horror in her voice, "please do not tell me these are ALL of your clothes."  I laughed as I plopped on the bed and she rummaged around my closet.  "Those are all of my clothes!" I exclaimed proudly.  She couldn't believe it.

Despite having a much bigger place, we have gone minimalistic. It is so much better this way. We spend far less time organizing and looking for stuff. We have cubbies in the front hallway, for example. Each kid has 2 hooks for jacket and backpack. A shelf to hold each of their 2 pairs of shoes. A bin for hats and mittens and another for school papers. It's easier for my kids to dress themselves and put away their stuff when they have fewer things to take care of and choose from. All of their toys are on shelves and off the floor in the tv room, none are in their bedrooms, which are reserved for sleeping and studying. There is little clutter anywhere. Even in it's messiest state, the house is not that messy because we don't have much stuff. It's kind of like a rock garden, I guess. It can feel cold to some and is not everyone's taste, but for our family it has proven to be the most economical, functional, democratic, and best way. 

If you're a parent who spends a good amount of time at home and feels the enormous burden of keeping house, I suggest paring down your stuff. I stopped being a slave to our belongings and it was absolutely life-changing in the most positive ways.

Jake

Jake 11/2010

Picked Jake up from after school, last night. He was both droopy and warm to the touch. He wasn't interested in dinner, all he wanted was bed.  I later went to check on him. He snored deeply as I carefully removed his glasses from his face. He awoke only to tell me to call him when Dad got home. "I want to light the candles, Mom," he told me.

Have I ever told you what a sweet kid he is?  He gets it.  We don't do presents every night, in fact the boys have gotten just 2 little gifts and the 8 days are almost over. But we DO light as many of the kids' handmade menorahs as they want and the boys ooh and aahh over flickering lights, all the more a spectacle because of a large mirror and window in the dining room. This is what Jake wanted to be woken up for. The candles, the songs, and Dad being home. Then we guess which candles will burn out first and faster.... 

Despite spending his day in pjs at home with me, we'll be going to a senior center in a couple of hours.  I am accompanying his brother and his class in a holiday concert.  Jake will sit in the back and relax. His face is flushed and he's lethargic, but he has not uttered one complaint and will suck it up for the hour. I'm so proud of this not-so-little guy.

status

Except for half a day on Thanksgiving, my husband hasn't had a day off for 6 weeks. He has been working 7 days a week, leaving at the crack of dawn and arriving home well after dinner.  Serious fires have erupted at work and it has become obvious that at least one of my husband's bosses will be let go.  Everyone is overworked, stressed out and scared. Everyday, the US headlines are dominated by news of slow recovery and growing unemployment.

Jake asked, last week, "Dad? Since it's Shabbat and Hanukkah, do you think you'll be home on time?"

"I'm trying my best, Jake" my husband replied tersely, "I'm trying my best."

Recently, Belac decided that he can't sleep alone in his bedroom. My husband, Jake and I all slept with him during Thanksgiving week. Understandably, he likes it much better that way.

It's obviously stressful for my husband and my boys miss him. But our situation is far less stressful and far more desirable than his losing his job. We count our blessings. We all buckle down and deal.

waiting

The mom dropped Belac off and we barely had a second. I was finishing up with a piano student and there wasn't time to speak meaningfully. "He said it was really easy and basically knew everything we did, but it was the attention piece..." she whispered before running off. We're going to talk in the morning.

And this is the thing. I am sure that Belac needs extra math help and will benefit from these sessions, if even just to be in the company of other people, in someone else's house, over a group activity. But I think what generally surprises most people is that he knows much more than he initially appears. He also hears much more and processes much more than he appears, although he obviously misses a lot, too. Is this mom surprised at what he's capable of?  Was she flabbergasted at just how much redirection he needs? I hope she will speak freely with me tomorrow.

helping each other help

Belac 11/2010

I've become friends with another mom. Over the past year, we have seen each other often on the playground. She is from Hungary, her husband is half-Indian and partly because of this outsider-immigrant kind of background, we seem to have a certain understanding of each other. At first it was rather intimidating. She is very striking looking, a natural beauty, and had - what appeared to be - an easygoing life with 3 perfectly-behaved, happy daughters. Now I know that it's not exactly so.

Among other things, her youngest child is struggling in school despite not being designated. The mom has come to feel strongly that her daughter should be held back one year, though the school will not allow this. She has felt increasingly alarmed about her daughter's growing academic struggles and very alone.

Belac and her daughter now have the same teacher for the 2nd year in a row and they happen to get along well. They often wrestle and chase each other on the playground after school. The mom recently volunteered at the school math lab and saw that both our kids relied heavily on their fingers and did not have command of basic concepts. This was not surprising to me given my own observations. The mom and I talked on and off about what to do. I have been unusually honest with this mom about Belac's challenges.  Finally, this morning, we met with some books and devised a lesson plan.

Tomorrow, the mom will take both kids home. They will have snack and a play date and do some math. Next Friday, they will come home with me and we will do the same.  If all goes well, we will continue. Who knows if this will be enough to turn things around, but I appreciate immensely (and find it comforting) that we are trying to help each other help our kids.