KIDS!!

Today Ricki again lost her glasses! I decided not to "chew the cud" (rumiate over it), and to search tomorrow. In the meantime she can wear last year's percription.
KIDS!!!

Two Short Pieces on Language(s)

(Excuse the)Bad Language
I remember hearing "we were just __cking around" my year of university. I used it once at home, having NO idea of the meaning until my dad "hit the ceiling" in reaction, and I realized that it probably wasn't a very good term....
So imagine my consternation 2 years ago, when I started preparing Ricki for our trip to the US. I tried to teach her to say "Thank you", but as with most Israelis, she can't say "th", so it came out "__ck you". Just what she needs to say to anyone who does her a favor, yeah? Just what she needed to greet gradpa with….. And of course, as I corrected her, she tried harder, so the “F” (which is what Israelis are likely to say instead of “th”, came out even stronger and clearer.
My older kids (not-so-religious) try and be careful what they say around me. I complemented my daughter that since getting married, she manages to drive her car without cursing the other drivers out.
At least Ricki’s not TRYING to say bad words…..

Ricki’s“Yiddish”
The other day Ricki and I were working on studying for a test. I had to write an additional word on her page, which I did from the side. Since the angle I had was a bit strange, the word came out looking slightly funny.
“Mom”, piped up Ricki, “What did you do? It looks so funny! Please don’t write in Yiddish!”
(I do not know Yiddish at all. Ricki comes in contact with Yiddish through some of her nephews that speak it. When she wants to speak in “Yiddish” she’ll say some nonsense word, assuming that it will make her point understood by those speaking what sounds to her as nonsense. And she thinks that she is really speaking Yiddish……)

The Eyeglasses

Last night after Ricki had put on her pajamas for the evening, I suddenly noticed that she was lacking her eyeglasses. Now when she was younger, I had always bought two pairs, one to wear and one to “search for”. And even though she has been pretty good about not throwing her glasses any old place for several years, it was only this last year that I decided that we could really manage with only one pair. Because having a spare set meant that if they DID get misplaced, she had a second pair for school, and the search for the missing pair could be postponed, if the day was a full one, to “soon” and not “emergency-right-now-this-minute- drop-everything-and-look-for-the-glasses”.
My luck last night was that I had noticed her glasses as she put them on after her exercise club, so I knew that she had worn them home. (Barring the possibility that she had simply decided to chuck the $200 aparatus from her nose to the street, which I doubted.)
So, not having a spare pair, we started to turn the house upside down looking for the spectacles. Even warning Ricki that there would be NO computer time on the morrow sans eye gear did not jog her memory as to where she had placed them when she was changing clothes. (Usually in such cases she puts them either on her bedside drawers or on the floor near her clothing.) (Obviously we are working on the concept that leaving eyeglasses on the floor is not acceptable.) We looked behind the bed (don’t ask what we DID find there… enough books and trash to keep a dragon happy). I checked the dirty laundry baskets. Her room, the living room, the kitchen: all were searched to no avail.
So imagine my pleasure this mourning when I opened her clothing closet and found them in their “official” place next to her hairbrush. She had actually put them away, and we hadn’t checked the most obvious place in the world.

Israeli News

Beneath the Wings is by no means a political blog. There are more than enough political bloggers on the Israeli scene. But for once I do want to say that I am 100% behind the IDF (Israel Defence Forces) and operation "cast lead". I know that arab civilians will be killed, but if and when so, it is the very unfortunate fact that they chose to live and stay (despite warnings) near military targets. And if Hamas forces them to be there, may I suggest that they NOT vote for Hamas in the next election....
I do know that Arabs walk the streets of my town without fear. They walk in Jerusalem without terror. Israel never targets civilians.
On the other hand, woe to the Israeli driver who by mistake enters a palestinian or pro-palestinian area. He will be lucky to escape with his life. (My son-in-law was lynched by Arabs and was rescued at the last moment.) Hamas is already warning that attacks on buses, civilians, etc. will continue. (Not that they ever stopped trying...)
And the latest news is that there was a stabbing in "Kiryat Sefer". Actually, it was in Kiryat Sefer's sister city, Brachfeld. How do I know? It happened on my son's street. Lovely people, the Arabs... wish they would all go to &*%$^#%#^% (at least those who do/support/ and or are glad about terror). Sorry, but that is how I see things. Not politically correct in America. My brother will be upset at me, but I am sick and tired of all the terror here.
DIDN'T WE WITHDRAW FROM THE WEST BANK? Didn't they have a chance then to change and work towards peace? Has any country in the world thrown its own citizens (towns of them...)out of legally acquired homes for the sake of peace?
What did it help? NOTHING. Peace needs TWO partners. One is not enough.
Americans do not understand that the Arab culture and mentality is NOT LIKE THE WESTERN one. Polite resolutions just don't work. Too bad the Arabs don't give up this war. They could have jobs, income, etc., if they would choose to make peace. (A REAL peace.)

Awards and Tag

"Babysitter" gave me the "I love your blog" award (which I had, but I always love complements.......). Her blog is on my list of blogs to follow, it bears checking out.
Now in addition, "G6" at "Guess Who's Coming to Dinner" (who wouldn't come to dinner with such lavish tables settings....??)tagged me, and for once I'll go along with it.
Now, the nearest books happen to be those in my "special needs library" shelves, and I felt free to choose from any on the far right (nearest side). I choose Babyface by Jeanne McDermott. She is a science journalist and happens to know how to write. You will gain from reading this book (published by Woodbine House), even if you do not have a special needs child. Her second son was born with Apert syndrome, which causes cranio facial differences.

The following excert (from page 56), is just after they hear from an experienced set of parents what type of things they are in for (numberous surgeries, etc.) (Jeremy is their 1st son, Ted the husband.)

"Apert kids," I fummed, "What the hell is an Apert kid?"
"Ted looked puzzled.
"He's a kid first, not a syndrome," I declared.
Ted nodded, mustering his own forces, as if saying the words out load made them true. "Jeremy is a kid first too. Nathaniel's medical problems should not take over his life."
"Or yours," Mom said. "I will come for all the operations. At least, I think I can."
"We need you," Ted said.
I yawned, exhausted. Nathaniel fussed all the time. He napped in two-hour stretches and since only nursing consoled him, my days and nights blurred into a grey continuum. I was so tired that my name and phone number disappeared from memory. One evening, after instructing Jeremy to put on his teeth and brush his pajamas, I spilled into bed fully dressed and conked out under blazing lights.

Seven things about myself:
1. I love almost any type of music except rap (which I do not consider music).
2. I have long long feet. Got long feet genes from both parents.....
3. I miss having a dog. Not acceptable in my town. Married sons would disown me.....
4. I never got a driver's license.
5. I used to shoot rifles, and scuba dive (not at the same time) with my Dad.
6. When I was a kid I took ballet lessons. I weighed a lot less then, but was still the fattest girl in the class. But I loved the music to Swan Lake anyway.
7. When I was a kid, I considered as career choices
- Accrobatic stunt pilot
-doctor
-oceanographer
-midwife
and I settled for being a nurse. Shabbas made most of the other choices impractical.

The award I want to pass on to

1. Belinda at A Journal in Photos {NOTE For my Jewish readers, be forewarned that hers is a blog that has some elements you may not like. However, luckily for me, her "religious thought" blog is separate from this one.] This blog is basically a photography blog, and many of the pictures are stunning. For the last week or so, her pictures have been of people. If you scroll down further you will see some of her stunning nature studies.
2. Frum Teacher
I also tag frum teacher for the meme.

21 Things about Ricki not Related to Down syndrome

1. When saying a certain prayer which contains Ricki’s Hebrew name, she pipes up and says D.E.!! (her sister’s name)
2. She loves dance, and mimics dance routines very well.
3. She is an expert at pretending to say her prayers, when she would rather not.
4. She has long blonde hair.
5. Her favorite color is, of course, pink.
6. Her brothers irk her no end.
7. She loves to phone her friends.
8. She loves to eat.
9. She loves to not listen to her mother.
10. She thinks she can pull the wool over her mother’s eyes.
11. She likes thinking of herself as an all-most high school girl, rather than an eighth grader.
12. She enjoys taking pictures with her camera.
13. She has picked up the most atrocious language from sneak views of an older brother’s (not-so-nice) computer game. We warned him to keep it hidden.
14. She enjoys swimming. (She is learning still.)
15. She uses English words (she speaks Hebrew) here and there, to sound important and grown up.
16. She enjoys bossing her nephews and nieces around.
17. She likes walking in the rain with an umbrella.
18. She enjoys giving gifts to others.
19. She has a good sense of rhythm. Would make a great drummer….
20. She hates being looked at and talked about.
21. She likes showing her photo album off.

(The idea for this post I got originally from Maureen here.

Dieting Disappointments

Dieting is hard. And aggravating at times. This week I was so good. I was careful all week. I had only 1 (one! uno! singular!) doughnut this channukah. Then this evening, partly due to feeling cold, I overdid the cocoa drink (and I had forgone it all week!) that I love to have in the evenings. So I probably blew 3 days worth of dieting in one half hour.
Grump. Its not fair…..
But as I have written on my sidebar:
“Tomorrow I will try again….”
Gee, we lit 7 candles tonight. Amazing how fast a week goes by.....

Cooking with Ricky, or the Inexact Recipe

Yesterday, after three Chanukah days of being very unstructured, I started the day in an organized manner. I wrote a schedule out for myself, and a separate one for Ricki. My goal in doing so was that Ricki would get to some old homework, and the promised fun activities in the middle and at the end would be an inducement to get the homework done.
This arrangement actually worked very well. Therefore, after an hour or so of study, Ricki and I sauntered into the kitchen to make “cheese latkes”. (Latkes are fried food, usually of potatoes, eaten on Chanukah.) Now the recipes I had for cheese latkes were for sweet ones, and I wanted to make something salty, with chopped dill added in. So I made up a tentative recipe, planning to alter it if needed, as I went along, or according to the results.
Tentative Recipe
1 peeled and grated potato
1 finely chopped onion
½ cup flour (later we added more)
Bit of baking powder
2-3 eggs
½ teas. Salt, bit of black pepper
2 sprigs dill, finely chopped

Mix and fry by spoonfuls in oil in frying pan

We started off pretty good. Ricky asked me what the roots growing out of the eyes of the potatoes were, and I explained, and showed her how to remove them. She attempted one on her own. She peeled the potato quite well, and I meanwhile chopped the onion. I got out some pre-sifted flour from the freezer, and when my back was turned, Ricky dumped most of it in. Maybe it was a cupful, I don’t know. She looked at the recipe card, saw it called for salt, and took down the sugar. Before I could reach her (I’d been getting the eggs out) she had dumped 2-3 tablespoons in. I removed what I could, growling a bit (OK, a lot…)… but couldn’t get it all out. As we fried the latkes I saw we needed more flour to hold them together.
In the end they tasted pretty good! (I wish they didn’t have a sweetish tinge, but my husband liked it like that….) Ricki was of course pleased, the homework was finished.
But if you want an exact recipe, I’d be hard pressed to supply you with one.

Family Evening

On Monday evening we had a family meeting. And for once, by some miracle, all of my offspring managed to show up. Later, my brother asked me if I manage to keep all the grandkids straight, and I have to admit “usually”… sometimes I do have to pause for a minute, to get the right name.
Anyway, this annual Chanukkah party has a two-fold purpose:
One, as would be expected, is for all the siblings to get together, and have some fun. But the second reason is to think about Ricki’s future. I don’t want that after I die, that Ricki should fall as a “burden” on one of her siblings. She has, thank G-d, enough siblings that looking out for her best interests can be done by several people. I want that the siblings should be used to checking:
-What does Ricki want?
-What are her dreams?
-Can we help her obtain these dreams?
-Can we help her be more independent?
-Does Ricki get along with those around her? If not, can anything be done?
-Is anyone abusing or using her?
-Does she have any health needs that she needs help with?
Etc., etc., etc.

Now usually, Ricki’s siblings have treated my insistence on this as a joke. Suddenly, this year it wasn’t. She is getting older. I am getting older. And they are, it seems, getting to be more aware that theirs is a responsibility that really does need to be carried--- and shared.

Keeping Busy

Yesterday Ricki was busy most of the day doing various arts and crafts. I had to assemble the tops in her mobile, with scotch tape (especially since she had cut off all the “glue” tabs), but she had colored them. She did the cut-out work (from a marked sheet) by herself (except for the green one), and did quite an acceptable job. In addition she did pages and pages of a chanukah booklet. I think that tomorrow we will have to study a bit (even if she protests); she has two tests after the holidays. Maybe we will do some cooking as well.
Before holidays I always have dreams of all the things we will have time to do. Somehow it seems that I can dream much faster than produce. We never get even half of my ideas done…..



And, of course, Happy Chanukkah!
and for my non-Jewish readers,
see:HERE

The Journey and the Shabbas Candles

Yesterday’s post generated a comment which mentioned shabbas (Shabbat, Sabbath) candles, and I was suddenly reminded of events from 14 years ago, at the time of Ricki’s birth. And these events are a tiny picture of the journey each mother goes in coming to term with the diagnosis of Down syndrome in their child.
I did not know before giving birth to Ricki that she had Down syndrome. Sure, my mother-in-law had been warning me for years that I was at risk due to age, which I knew myself, but most of the women in my community have kids over age 35, and very few have babies with Down syndrome. And I didn’t do an amniocentesis, because I wouldn’t abort anyway. (So why take the even small risk of miscarriage?). So the first appraisement of our new situation was is the delivery room.
In the delivery room, the doctor told us that they would need to do genetic testing, as there was a possibility of Down syndrome. The illusion that it was only a “Possibility” lasted all of one hour. When I reached the regular maternity ward, I saw the pediatrician, and asked when they would be testing for the “Possibility” of Down syndrome. He answered: “I wish it was only a possibility. There is no real doubt that she has it; she has all the standard indicators of Down syndrome.” As a nurse, I realized that he would never have made such a statement if he was in doubt, and I acknowledged the fact of her diagnosis. But acknowledging and coming to term with it are two very different paths. The first involves the intelligence; the second is an emotional journey.
I gave birth on a Thursday morning, barely after the dawn. On thurday morning, on arrival to the maternity ward, a bed was found for me despite the floor being over-full. At least I had the privacy of drapes around the bed. But I am not a very out-wardly emotional person. And my crying was more internal than out.
I was in the hospital for the Sabbath. Our hospital, serving mostly an orthodox Jewish community, has a large maternity ward. In order to prevent fire hazards, all women who wish to light shabbas candles on Friday afternoon do so in the dining room, on a special tray set up there. When I went to light, I lit… and started praying as I do every week, for each of my offspring. Suddenly I could no longer restrain my tears. What do I pray for her? Obviously her heart condition (minor, only PDA) was a priority. But for my other children I pray for success in studies, that they eventually find a good spouse, have healthy kids…
At that time I had very little knowledge of the vast potential of children with Down syndrome. But I knew that her needs were great. From where do I start? What to ask for? I was in tears, and only the hands over my eyes (and luckily, everyone else’s hands over their eyes) gave me scant-very scant and insubstantial- privacy.
A week flew by, and the following Friday afternoon, I “prepared” myself. I was not going to break down crying in from of my kids. I didn’t want them to view Ricki’s birth as a tragedy. So I made sure that I was really 100% ready when I lit candles (no need to straighten my older daughter’s hair, put the tablecloth on the table, etc.). I was ready and able to flee to my room after lighting the candles, to cry there in the privacy of my pillow.
I lit the candles, and ran. On reaching my room I suddenly realized that there was no need. Over the preceding week, hope had entered. I had heard much more about Down syndrome. My daughter who the week before had lain listlessly like (excuse me for saying so, but that is how I had observed and felt)—like a piece of meat--- she had shown my already her vigorous spirit. She fought to turn her head side to side. I was not about to collapse in tears. Yes, there was still pain, there was still doubts and uncertainties… but the journey towards seeing Ricki as an individual human being, and one with potential, had begun.

PS Happy Chanukah!

Chanukah -Lights of Freedom and Hope

In Honor of Chanukah, I made a Presentation, using as music "The Chanukah Song" from the The Rite Lite Chanukah CD. see: http://www.ritelite.com/catalog/chanukah/books-music/807-chanukah-your-favorite-songs-cd.html (I asked special permission, so please don't copy it.)
This Chanukah CD is a very nice album of real Chanukah songs, and Ricki loves it. The girl in the two slides is Ricki (from last year and a few years back).



I would like to add that many people make the mistake of thinking that Chanukah is all about the war fought. While in some ways it is, as the Maccabeans gave thanks for those miracles, as we do in prayers on this holiday....it is much more about the miracle of the oil that burned for eight days. The proof of this is that the war was not yet over - by a long shot- when the miracle of the oil occurred. But at that time, the Maccabeans were certainly heartened by the sign of favor from the miracle that G-d performed. They had stretched themselves to do the neigh-impossible, beyond the natural order of things, so the oil burned longer than the natural way of oil.
I hope you enjoy this (even those of you who are not Jewish). Chanukah IS a celebration of the help of G-d when people stretch themselves in attempting to do His will.
Sorry for the misspelling of Chanukah (which can be spelled about 5 different ways in English) in the first slide, but its too time-consuming to redo.

Overweight and Prejudice

Ever since my son decided to make a stomach-bypass, I have found it easier to keep my diet. And now that he has been home for several days, I find it easier still. Its hard to pile your plate up when someone else in the house is currently surviving on (post-op) “meals” of 6 tablespoons of pureed food .
But it all makes me pause, wondering about how the world views overweight. I want to lose weight because I want to live longer, be able to do more, feel stronger. And I know that my current state is the result of choices I’ve made.
But what makes me really upset sometimes is the attitude I feel sometimes from thin people. [Like the lady who once told me “You know, you are really fat.” (As if I didn’t know….)]
We all have our shortcomings. Some of us hate technology. Others are not so good at expressing themselves. Some people are afraid of heights, and some are loathe to speak in public. Some people are angry people who are hard to get along with. The list goes on and on. These shortcomings are often exasperating for others who don’t share them. But normally we try to understand, and be sensitive.
However, along with this, much of humankind are people who feel “better” than anyone who has shortcomings that they do not possess. And as for our own shortcomings, we “understand” it.
The person who fears dogs remembers the huge dog that knocked them down as a toddler, the person who hates technology understands often the things that led to it, as well as the present circumstances that contribute to the unwillingness to change.
But being overweight has the disadvantage that EVERYONE sees your shortcoming. There is no hiding it. Most other shortcomings are neither readily viewable nor obvious to the next person on the bus. It is also a fight against the body’s survival instincts (which causes hunger as fat is burned) as well as any contributing physiological factors. The smoker can decide not to buy cigarettes, but the overweight person (especially if they live with others), can only partly limit the amount of temptation that they come in contact with.
I am not saying that overweight people shouldn’t try and loose weight. I think we should, if we can, because of the health risks. But sometimes I feel very peeved by the condescending attitudes I get from people. Do these strangers have any idea of the battles I fight daily, of the numerous things that make dieting difficult for me? Does it ever cross their mind that I am something other than “fat”?

Dreams- a funny one

Oh, dreams are funny. Usually I never remember my dreams except when pregnant. (And those days are long gone…)
But suddenly, this afternoon I had a nap, and dreamed I was scuba diving!!! Now I haven’t been scuba diving for at least 35 years!!! But here I was floating nearly effortlessly underwater, enjoying the freedom. I woke up feeling that I had really been diving. I almost regretted waking up.
Look at this amazing tool we have, the mind. Memories, untapped, lie dormant years and years, but can be unburied with the slightest prodding. Amazing! (I’ve mentioned this before in regards to smells.)
Maybe I’ll loose 40 kilos and really go scuba diving. I wouldn’t attempt in my present state…..

“What is surgery?”

On Monday, when I went to the hospital for my son’s operation, Ricki came along. Being a big girl of 14, the hospital wouldn’t kick her out.
We were in the special waiting room for families who have relatives in surgery.
Ricki asked after ten minutes, slightly exasperated, “Where’s N.?!?” (her brother)
-“He’s not coming here now. He is having surgery.”
-“What’s surgery?”

So I explained that surgery is when the doctor takes a small tiny knife, and makes a cut in the person, goes in the body, and fixes things.
-Hmmmm.

A few moments later she asked again (guess she didn’t like the answer the first time), so I re-explained. The second time she “got it”. How do I know? Because later I heard her telling her imaginary friends about “knives” and “fixing”.

Glad she heard this AFTER her ear surgery…..

The Birds

It is an Israeli thing to leave your windows open (at least a bit) in the winter. People prefer to bundle up with an extra sweater in the fresh air rather than breathe the same old dank stuff circulating through the house. I suspect that this custom is a hang-over from the days of neft (kerosene) heaters. (We used kerosene until about 5 years ago, at which point I made it clear to my spouse that I was not going to suffer another winter of fume-induced headaches.) With kerosene heaters, it is imperative to ventilate the room, even if the wick is clean and clear, and all the more so if it is not!
The interesting thing is this: If the window or porch door is open a bit, not only does the air come in. So do the birds. And the downside is that once inside, they go from room to room, looking for some crumbs, and then they can’t find the way out to escape if you enter their “maze”.
We have a big plain glass window in the living room, usually closed in the winter. Whenever I cross the living-room‘s threshold, and a bird is there (having entered from a different room’s window), havoc reigns.
The bird, petrified by my arrival, makes a bee-line for the nearest “exit” (or so he thinks). He crashes into the closed window pane, and usually drops to the floor. As I near him (I have to go past the bird to open the window for him), he will often try again, seemingly unaware that this tactic doesn’t work. [The (don’t-you-dare-say-it) phrase “bird-brain” doesn’t come from nowhere. They really don’t seem to have much cerebral matter….] This tactic failing for a second time, they will take a wild swoop towards the room’s door, often making their flight path inches from my swiftly-ducking head. (And afterwards, if I go to the back of the house , I may still encounter them looking vainly for an exit.)

I have nothing else to add here- just wanted to give you a glimpse of live in Israel….

Wouldn't you know....

Tonight I was going to go to sleep early.
Good for my diet.
Good for my sanity.
Good for my health.
So my printer got messed up and I am trying to get it to work by deleating and installing it. (So I can print something Ricki needs for school, I already did the work, just have to print it....)

PS. And Ricki got no soya today. I purposely didn’t buy, so that she should see that it is missing and gone if she wastes.

There Was a Girl

Well Ricki has no curls in the middle of her forehead, but as the Mother Goose rhyme goes, “When she was good, she was very very good, and when she was bad she was horrid”.
Today at noon I had gone to the grocery, and one of the items I had purchased was frozen soy patties. Ricki loves these, and I always have to remind her to take only one. She often tries to sneak two, but she knows I don’t allow, evidenced by her hiding of the second patty. She can heat them very easily in the microwave.

So when she asked me if she could take a patty, I said yes. I reminded her to take only one.

About an hour later I decided I also wanted one. But for some reason they were not in the freezer.

-Ricki, where are the soya patties?
-I dunno…

So I figured she had left them out somewhere, and went searching.

I found an empty package. I could see a few patties spread on the sidewalk outside. I don’t know how many of the 14 patties she ate, and how many she threw, but either way it showed a total disregard for anyone besides herself, a disrespect for authority, and a willingness to waste.

I was furious. I said things I shouldn’t have said. (I plead the fifth, but it was bad…)
The fact that I was tired didn’t help.

In addition, Ricki has a tendency to throw stuff on the floor. Lately I have been very careful to call her to pick stuff up, not taking the easier short-term solution of picking up after her. In addition, every day after school I make her pick up any of her stuff that was overlooked earlier. So today, being frustrated after over the soya patty-incident (which had been about an hour before), and tired, I decided to put the ball in Ricki’s court. I wrote out a detailed list of things she had to straighten up and do. I gave her the list, told her I was taking a nap, and went to bed.

Maybe (probably) she was still affected by my explosion an hour earlier. Maybe she enjoyed having a list to work from, rather than being “told” by me. But when I woke up an hour later, the jobs had all been done. Completely.

“Better Ask Me Tomorrow”

Today (Monday) an acquaintance I only see once every few months asked me how I was. Well, today had been a very (VERY) stressed-out triply overloaded day. I should have told him my usual “bad day” answer: “Better Ask Me Tomorrow”. But I didn’t. I was honest.
For a week I had known already that today would be a whirlwind-er. I had agreed previously to spend part of the morning visiting a high school in the area. A friend whose daughter (who also has Down syndrome ) is Ricki’s age and I need to find a new school for high school, and we had agreed to check schools out together. So she set up an appointment, and along with an educational consultant that we trust, we were to see the first possible school. I also had to run to the pharmacy to pick up Ricki’s Concerta prescription, since the pharmacy did not have it in stock when they should have had it, last week. (Last week when I went to get it on the regular date, the pharmacist sheepishly admitted selling Ricki’s doses to someone else, and the replacement would arrive later that day…..) I also had to balance the month’s budget, and do a few household chores. A full morning, but do-able.
The afternoon (5-8) was more problematic. Usually on Mondays I take Ricki to her favorite activity of the week: Drama therapy and exercise/dance class. But an important meeting of a Down-syndrome group I participate in had been scheduled for the same hours. I was expected to come. I tried to find a replacement person to take Ricki to her activities, to no avail, so I explained to a begrudging Ricki that there would be no “club” this week. In addition, I suddenly received notice that (in the SAME time slot) there would be a parent-teacher’s meeting. I did not need to go to see Ricki’s teacher as I call her at least once a week. However, I had hoped to catch a few of the teachers who really are not making the needed effort to give me warning of what they are going to teach, in hopes of rectifying the situation a bit. Unfortunately, it was extremely clear to me (without even a seeing-eye-wizard’s crystal ball) that I would not be at the school between 6 and 8 pm. [My only consolation is that it wouldn’t have helped; these teachers are set on working out their lesson plans at one am the night preceding the class….]
Then my 20 year old son called me up five days ago, with news that his voluntary surgery was moved up…..yes, to December the 15th. He also mentioned that he had a friend accompanying him to the hospital, as well as our 18 year old son.
So what do I do? Go to the hospital and wreck plans affecting dozens of other people? Or let my son go accompanied by his brother and best friend, and my husband? At this point we had no knowledge of the hour of the operation, and what I might need to cancel. After discussing it with him, I very reluctantly agreed that most of the day he could indeed manage, and I would pop over to the hospital the hours of the operation itself, if at all possible. We talked at length about his fears of waking up in the middle of the operation, and I felt that here, at least, I had contributed to his well-being.
Now lets fast-forward to 3pm . The surgery was scheduled for 3-5, but I am running late, and realize that I will probably only be able to be at the hospital by 4:00. So I call up my 18 year old son, to “check in”, only to discover that neither my husband or my son are at the hospital, only his friend. So I urge Ricki to hurry up and get dressed, take a taxi to get there, and arrive minutes after my son went into surgery at 4:00. At least his father had arrived. My married daughter promised me that she would arrive by about 6:00. So in the end, I wait at the hospital until 6:00, until the surgery itself was finished. I phone someone at the Down syndrome group meeting, they urge me to come. Eventually I arrive there at 7pm. I have missed most of the meeting, and am very frustrated by trying very hard to accomplish very little.
So when one of the people at the meeting asked how I was, I just said how frustrated I was….
But it’s not their fault. Nor mine. I just felt like the Morton salt commercial: When it rains, it pours. Everything rained down on me, and I got drenched. I feel guilty for not being everywhere, or for perhaps making the wrong choices.
So how am I? Better to ask me tomorrow…..

“Magic Button”

Someone wrote the following a week or two back, on the blogosphere. (SORRY I DON’T REMEMBER WHO.) Two interesting questions:

“Suppose that it was possible to press magic button 1 that would have the result that no more Down's children would be conceived. That somehow the genetics just would never happen again. Not that they would be killed or aborted - just that they would never approach existence. Would you vote to press button 1?
Suppose it was the other way round: that there was no such thing a Down's children. Now we have a magic button 2 which will mean that Down's children will start to be made. The odd one here and there will be conceived, more to older mothers. Will you vote to press button 2?
I'm not 100% sure about button 1, because even Down's children enjoy their lives and I think they bring a great deal to the rest of us, if nothing more than teaching us to be less selfish and more appreciative of the wonders of the world.
But I would not vote for button 2.”

So I have been pondering this ever since seeing it. Frankly, my first inclination is to say I would vote for 1 and not for two, ie , a Down-syndromeless world. I have mentioned many times that I am not a big believer PER SE in Down syndrome. I believe people with Down syndrome, once conceived, have a right to life, and that they deserve respect and opportunities. But I would prefer that my child have the same abilities and chances as everyone else.
I do agree with the above writer that we gain a lot from having kids with Down syndrome in the world. So even though I would vote for button one, G-d didn’t. Now I don’t presume to know why. I can not second-guess G-d. (a BIT out of my league…..) But it is obvious that G-d created a world which we perceive as not being perfect. And cancer, Down syndrome, Mumbai, and financial recession, and that cranky neighbor, all give us a clue at some point that we are not just here to eat more jelly doughnuts than last year.
So in the end, since we are NOT the deciders here, I decided to pass on answering. I really do not have a G-dlike wisdom to decide. I can only choose where I am going from here. What type of mark my actions will leave on the world. A heck of a lot more important, if you ask me.
So my kid has Down syndrome.
So what? Look instead at the mark she is leaving in the world.
I guarantee you, its positive….

[Anyone who disagrees with me is asked to do so civily.]