The Missed Opportunity

    The incident I am about to relate occurred about a month ago, say about a week or a week and a half after finishing the "mourning week" for Ricki. One morning I left the house for my daily aerobic walk, a bit before 8AM. On the way I passed scores of children and teens on their way to school. Suddenly I saw "C", a girl from Rickie's class, who lives not too far from us. I smiled at her, and she stopped to talk.

"Hey, you're Rickie's mom, aren't you?!?

"Yes, I am…"

"Rickie died, right?"

"Yes, she did."

"Because she was ill, right?"

"Yes, because she was ill. But not everyone who is ill dies. Ricki was VERY ill."

"I remember that. She even came to school with oxygen. And she was ill because of her overweight, right.?"

"Yes, her weight caused her illness."

"Well, I hope she has a 'refuah shleima'!" (a complete recovery)

   So I smiled to myself, and wished her a good day. Within moments I was kicking myself for the lost opportunity. "C" had learned the phrase, the "script" of "refuah shleimah", but in this case she used it inappropriately. I could have gently explained to "C" that Rina will NOT have a "refuah shleimah", and that she should instead say "I miss her", "You have my condolences" or the like. But I missed the opportunity. [But I DID (at least) tell a teacher from the school who I bumped into a week later…..]

The "Say Red" Story

     The "shiva" week is over; we arose from mourning on Tuesday morning, and went to visit Ricki's grave to daven (pray) and recite Psalms.

   It has been a very strange week to say the least. All but two of my sons and one step daughter were able to be with us for the week. We looked at old photo albums, and reminisced about Ricki. We even laughed about some of her lighter moments. Our favorite story was the "Say 'RED'" story:

Once (when Ricki was quite young) the older boys were entertaining themselves by cassette-taping other family members. When Ricki's turn arrived, they coached her: "Say 'Adom' (red) " She wasn't interested. After all, what was in it for her?

They repeated themselves over and over:

-"Say 'Adom' "

-"Say 'Adom' "

-"Say 'Adom' "

"LO adom!!!!!!" ("NOT red!") was the inevitable reply.

That was the first time she said two words together.

    I was amazed at the number of people who paid condolence calls: former classmates of Ricki from the years she had been mainstreamed (some on the verge of tears), former and present teachers, therapists, neighbors, storeowners from the area, and fellow parents. These were all in addition to regular neighbors and friends. Several people arrived from out of town (including several readers of this blog, who I met in person for the first time).

    In addition, it was interesting, like rewinding the cassette of Ricki's life, to have people who I had not seen for 12 or 15 years come walking out of the mists of the past to acknowledge the effect this spunky kid had made on their lives. It was humbling to realize how big an effect she had made on others (though we had traveled along with her, largely unaware).

So Far, It is Working

    For about a full week already we have a gate to the kitchen. Not a "keep-the-toddler-out-from-under-my-feet" gate, but a "let's help-Ricki-live" gate. Ricki's continued weight gain has reached terrifying proportions, despite all of our attempt to cajole, threaten, plead, and teach.We have tried dietitians, adjusting her medicines… all to no avail. So we finally realized that we had no choice but to lock the kitchen and refrigerator off bounds. Which we have done.

   We thought that Ricki would throw tantrums, but she didn't. It is almost as if she is relieved. SHE WANTS to be healthy, but she doesn't manage to fight her evil inclination, as is true with many of us.

Hospital Tales #8 – a New IQ Test?

     As I wrote yesterday, Ricki needed a PET-CT scan when in the hospital, which in Ricki's case seemed easier said than done. When they told me that she would have to lie still for three-quarters of an hour BEFORE the test (in addition to the 25 minutes or so of the scan), I had grave doubts… 

      Eventually it worked out because Ricki's doctor came specially to give her some IV Valium, which put her to sleep for the first 45 minutes, and left her drowsy for the rest. In addition, Ricki was motivated to lie still, having been informed by her doctor that if she "behaved and lied still" to the PET, he would buy her an ice cream cone. In addition the lady in the bed next to us promised her a "prize", and her daughter chipped in "I'll give you some chocolate".

   Ricki kept reminding me that she had been promised an ice cream, but she didn't really repeat all the rest…. Until post-test. On return to the room she requested her prize. And the NEXT day when the lady's daughter arrived, Ricki announced "I laid still!" The woman pulled out a piece of gum from her purse. But Ricki remembered quite clearly that the promised "goods" had been chocolate and demanded her due.

Now WHERE is that memory in everything else?!?!?!

 I think I have discovered a new way to check the true intelligence of children……

The Doctor’s Visit

    For two mornings in a row, Ricki complained that her mouth hurt. We had been to the dentist just the previous week for a checkup, so that was one fear less. In addition, she specifically told me that it was her tongue that was bothering her. I looked at her tongue at the first complaint, but noticed nothing out of the ordinary. The second time, I told her: “OK Ricki, I don’t see anything, but today after school, I’ll take you to the doctor” (which happens to be three buildings away).

   So at 6:20, expecting her home any minute, I went downstairs to await her arrival.

   And waited…. And some more…

   Finally she showed up.

   “Well, I went to the doctor,” she chirped; “He said it was nothing. It’s OK”

   Ricki had taken her nice new health-fund card, and had GONE BY HERSELF TO THE DOCTOR. She told me that she had shown her card to the secretary, and gone in by herself, telling the doctor that her tongue hurt.

     Later I even passed by the office, and checked with the secretary if all had really gone as smoothly as Ricki had claimed. And it had.

The Next Soldier? (Obsessing over Options)

 Prolog:  In Israel, the draft is mandatory. So sure enough, Ricki received her draft notice about half a year ago, and I took it to her school. The girls in her school routinely receive a deferment, not because of their disability, as you might expect. They receive an exemption because they are religious girls who feel that the atmosphere of the army is not suitable for them. (I do not in any way mean to degenerate here the girls who do serve; they do a lot of good work in the army or in national service.) However, last summer when the school arranged the exemptions, Ricki was in the hospital ICU with pneumonia, so her claim was not processed. I asked about it at the start of the school year, and I was under the impression that it would be taken care of with the “next group” of students. Well, that didn’t happen, and a week ago I received notice that Ricki has to show up at the induction center this Thursday, or face the consequences. And my sons in the army informed me that the “consequences” by this point could be the police coming to our house and taking Ricki by force. And they further informed me that if the police DID come, they would act, golem-like (ie, without reasoning), despite the obvious fact that she has Down syndrome, and is thus eligible for a medical exemption. (I mean, the army DOESN’T want her….****)

The Post:

    I am sure that all of you can relate to this: You have a problem, one that may even not be that big, and there are a few different ways to resolve it. But each way has its drawbacks, often related to the actions or good-will of 3^rd parties, which we may not fully be able to predict. The result? One can spend a day or two (or more) consumed in the grip of having to decide how to act, which action to choose. The preoccupation with this problem causes stress, which can be very draining, even on a physical level.

   This morning at 11AM I went for my regular 60-70 minute aerobic walk, knowing that I would need to get it in quickly, before the predicted rainfall would hit at noon or thereafter. I had been obsessing all morning about what would be the most expedient way to resolve the army problem. [Do I go through the channels of getting her an exemption due to her being religious, or should I just shlepp her to the induction center on Thursday, and let the army see for themselves that she is not exactly what “Uncle Sam  Israel” is looking for?] Compounding this is my need on a as-yet-to-be- determined-day this week to hopefully attend the circumcision of my new grandson.* (The circumcision was postponed for health reasons, and we will have only 12-24 hours warning in advance as to when it will be held.) Also a strike is looming, which may effect an office needed to receive the religious exemption, but when I phoned and asked if they would be part of the strike, the incompetent person who answered could not answer the question. And a query I wanted to ask the army got unanswered because their information phone is automated, and you can not reach a real live person.** Things just were not progressing....

    The end result of all this thinking was that after half an hour of walking, I was ready to call it quits. I was drained.... In the end I finished the walk only by reminding myself of my favorite line: “There will come a day that you can’t do this anymore. Today is NOT that day!”

  In reality, I needed to do (and did do, to a certain extent), what needs to be done when one is under stress from the need to make a choice.  I reminded myself that I can make my decision as things progress, I don’t need to make a irrevocable plan right away. I also reminded myself that in the scheme of life, this really is a very small matter to get worked up about……

    So I worked both fronts, reminding myself that the likelihood of them dragging Ricki away before her papers get processed is really NOT likely. (The army doesn’t act that fast in these cases.***)   In the end, a 3^rd party who I needed cooperation from to get the religious deferment could not do so, but I was referred to someone else, who acted decisively, promptly, and with good manners. That, coupled with the likelihood of the circumcision being on Thursday will have me running to the court on Wednesday to finalize the religious exemption. (That is, if they are not on strike……)

* Yes, thank-you for your congratulations!

** I HATE it when you can not reach a person on an information line. Yes, many times the automated line is enough, but often there are questions that arise which they do NOT answer, and the automated line is USELESS and downright frustrating!

*** If some robot-like “golem” police officers did arrive, she would probably create quite a scene, to put it mildly. They would need at least four people to get her out the door….

**** Actually, the Israeli army, to it's credit, does have an excellent set-up whereby young men with intellectual disabilities are allowed to voluntarily serve in a special program, doing jobs that their talents suit them for.

Epilogue: On Wednesday I took her papers to the induction center, without the needed stamp (because the court clerks WERE striking), and very quickly (and in a friendly manner) the lady soldier there took care of the entire matter. I KNEW that there wasn't REALLY a problem, so why did I obsess about it........?

True Confessions

Wednesday evenings is my swimming night. A local health club agreed for separate “only women” hours, on condition that one sign up for an entire year. The price isn’t cheap, but at least it is clean, and the number of women (and only adults….) is limited. This makes real SWIMMING of laps possible.
However, with Ricki’s older sister upstairs, and her father asleep, Ricki is left to her own devices. There are people there in case of emergency, and her sister comes down to check on her occasionally, but in general she can do what she pleases.
Last week before leaving for the pool, I spoke with Ricki and we planned what she would have for “supper”. She had already eaten supper (the separate swimming hours are LATE), but she wanted some of the vegetable soup that I would be eating on my return. I showed her how on her food chart (see HERE)she definitely had vegetables to spare, but we agreed that based on her consumption of the day, bread was a poor choice. We agreed that 1 slice of bread with the soup was more than enough.
Thursday morning Ricki suddenly blurted out that she had eaten soya patties (yes, correct, in the plural) the previous night, as also more than 1 slice of bread. Her overeating inclination won out. But at least she was being honest. And I think that being honest is the first step towards self control.

The Pink Schoolbag

The other day I sent Ricki downstairs to meet her ride to school. I checked from the window to see that she wasn’t making a detour to the grocery store, and that she crossed the street carefully. Then I went back to the task at hand. A few minutes later, I went again to the window, to see if her ride had arrived. Then I saw IT. A pink schoolbag.
Ricki has somehow gotten hold of a schoolbag which was definitely not hers. I was surprised; people usually don’t leave bags lying around, even if they have to make a quick dash to do something. There is too much risk of someone calling the bomb squad (and the bag getting shot at). But there Ricki was, prancing happily on “her” corner, with a lovely pink schoolbag. I told Ricki to leave it alone, but she was not in the mood to listen. And I knew that if I would go downstairs, Ricki would only run away ahead of me, walking to school on her own. So I called her driver and was about to explain to him NOT to let Ricki enter the car with the bag, that it wasn’t hers. Suddenly the 9 year-old owner of the bag turned up, extracted her possessions from Ricki (who readily returned it), and walked off to school. (Bet she doesn’t leave her bag lying around in the future…..)

Special Exposure Wednesday: Ricki Making Hot Beads

Ricki was sick last week, so we had a bit of extra "together" time. She made Hot beads for fun.(To see her creations, look back at Monday's posts.....)
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You will find more of "special exposure Wednesday" HERE.

Magic Marker Monday: Hot Beads

Ricki worked on hot beads this last week. First we finished off the last of the bigger-sized ones:



Then she attempted the small size for the first time. (I helped with the teddy, but the frame she did 95% on her own.)


You will find more of "Magic Marker Monday" HERE.

The Drink

Yesterday mid-day until the middle of the evening, we had no flowing water. A pipe had burst on shabbas, and unable to fix it then, we had turned off the main water line to the apartment, in order to stop the geyser erupting from the sink in my older daughter’s bedroom.
We caller a plumber on Saturday evening, who came within an hour, did his work, collected his fee, and left. The “Problem” was solved.
While all this was happening, I was busy finishing a novel I had started to read LAST Saturday. [I was able to excuse my not "diving" into post-shabbas work (like washing dishes and doing some laundry)because there was NO WATER. (GRIN. Anything to be able to read.....)] So Ricki went about fixing her school bag for today without any encumbrance from me.
Apparently (or at least such I suspect), Ricki, deciding that there was no water in the pipes, went off to the service porch to take a bottle of soda. There she happened on a glass mug owned by her brother, which contained a can of drink, and she requisitioned it in the name of thirsty students with Down syndrome.
Late last night, I noticed that my pen-bag was missing, and went straight to Ricki’s school bag to see if they had been pilfered by my dear daughter. There I discovered the drink, and Ricki’s older brother (the one who is in the army, and who is older than the owner of the can),smiled and said “That is Y____’s decorative jug.” Then he quipped: “I would have LOVED to see Ricki’s teacher’s expression when she would see Ricki extracting ONE LITER OF BEER from her bag!”
I have to admit, so would I…….