Sunday, January 27, 2013

Smilies and Smiles

   I had a slightly rough night last night. On thursday I slid on sand, taking a spill, and hit my left chest. So now my muscles on that side are sore. Turning in my sleep took me a couple of minutes each time.
   This morning I barely woke up in time to see my youngest (living) son off to the army for a two week stint. He had already left a note, wishing me a good day:
(picture: Note in Hebrew with a smilie and "good morning!")

  So we smoozed for a few minutes, and I garnered a few real smiles as well.
  Such a simple thing... but it made my day. Turned my mood around.
   So be generous today and beam some smiles to those around you. You may, so easily, improve their day.....

Thursday, January 24, 2013


    One of the reasons I have been writing so little as of late is because I wasn't home, and had no appreciable amount of internet connection. This is because I recently spent a week with my husband and two of my sons, visiting Rio de Janeiro (in Brazil). The views were gorgeous. But of how often did I think during the trip : "Gosh, I wish Ricki was here to see this with us." And it turned out that three of the four of us had experienced the same thought.

Wednesday, January 23, 2013

I Accuse!

   Today, January 23rd, is a day that is being promoted as a day " to commemorate the lives lived by people with disabilities who were locked away, who ARE locked away from full participation in society. It was also established to remember those, our elders, who have worked tirelessly for inclusion and access, for the word 'all' to actually mean 'all'" (Dave Hingsburger).   Here are my thoughts……
   Ricki was lucky in many respects. She lived in an era past those of the big institution, the likes of which I once saw (shortly before their closing) in the early 1970's.  But Ricki (and through her, I) were witness to part of the continuing struggle to let society realize that people with intellectual disabilities are PEOPLE, and can be valued and productive ones as well.
   How numerous were the times that people addressed me rather than Ricki in asking questions that could have been directed to her……
   How often did I witness people underestimating her due to the obvious fact that she had Down syndrome……
    How often did people assume that I was a "saint" because I had Ricki? (I won't say she was always an easy teenager, but few teens are.) Sometimes when people stop me and try to console me by saying that "You did everything you could", do they realize that guilt is NOT my problem, but that I simply MISS her?!?
   And one of the things I have felt most since Ricki's death is that I want her to be REMEMBERED, not just to be an entity that disappeared.
   We accomplished what we did in the battle for Ricki's inclusion due to the work of many advocates before us. Today I salute them. And I try to comprehend that there is a huge population, of institutionalized adults, that no one remembers.
  And I remember with sadness the terrible stain on mankind who agreed for era after era to shut away those who were different, less abled, and sometimes less productive.
   The terrific prejudice and assumptions that follow those with disabilities still exists today. And to a large extent, isolation from the larger community is still very prevalent. And this is something we need to keep working at……
I Accuse
   One of the battles we are still fighting for today is that of equality in medical services. Battles for the right to heart transplants, and other services for the intellectually disabled is not yet over. And this battle extends not only to those areas where there is a choice between "this" recipient, or "that" one, but even a general consideration that the lives of those with intellectual disabilities is one worth living.
   Ricki was taking a psychiatric drug (Resperdal) for the last two years of her life. She needed the drug, without question, but it is a drug known to cause weight gain. Ricki had always been on the "full" side, but she was active, and we were working on curbing her eating. But with the Resperdal her weight ballooned. We asked the doctor is there was no other medicine appropriate for her, and she said "No. There IS a drug that acts in the same way, and doesn't cause weight gain, but the health fund almost never prescribes it, and it costs $200 a month." We asked her to apply for an exception for Ricki, but she refused. "They NEVER agree to cover the cost for those with intellectual disabilities; they assume that anyway they will be fat. It's a waste of time to apply."
  So we went a different route: putting up the gate to block off the kitchen, checking that the school only gave her one portion at lunch, etc. If we had known that her weight would have lethal effects so quickly, we would have paid the monthly $200. I thought we had time. We would have fought the health fund without the doctor's help. But in my mind, the prejudice of the health fund helped kill my daughter.

Wednesday, January 9, 2013

A Whole lot of Mistakes

   The first mistake was that of the drug company to run out of medicinal cream that my husband needed. I went to a few local pharmacies, but none had the ointment he needs this week...and all blamed the drug company. (He needed 2 ointments, and none had the first med; one pharmacist did have the second, but I didn't buy it, as I needed the prescription for the first, more important salve.)
   So I called the health fund for help, and they located a tube of the first ointment in the health fund pharmacy about 20 minutes walk away. So I told the pharmacy  to save it for me, I would be coming. I could have taken the bus, but not yet having gotten my 10,000 daily steps in for the day, I elected to walk.
   Here I need to explain that I don't like wearing my boots. I have rather large feet, and the only boots I have found in my size have relatively smooth soles, and are not conducive to quick (ie, aerobic) walking. So I only wear them when I REALLY need to.   Now this morning I had been out, and the weather had been fairly dry for what had been forcasted as a very  "rainy day". So since it wasn't raining when I left the house, I wore regular shoes.  That was MY mistake.
 To make a long story short, I was caught in a deluge. Heavy rains and gusty winds drenched me. In addition, road construction forced me to walk through ankle-high rivulets. And then from the pharmacy I had to take a bus to past my house, to return to the first pharmacy in order to obtain the SECOND ointment. (For some reason, the health fund pharmacy didn't have it, only the first….). From there I had to walk home, again in the pouring rain.
   Now I am NOT complaining about the rain. We need every drop.But I hope I learned my lesson to wear my boots more often. And of course, on arriving home I plucked a pair of warm socks from my drawer, and put them on the radiator. Then I went to change my sodden skirt, and topped that off with wearing the warmed-up socks.
   I'm glad that at least I got the last bit of my aerobic walking in for the day. Maybe tomorrow I'll try canoeing……

Monday, January 7, 2013


   Dave Hingsburger at his blog Rolling Around in My Mind, has advocated making January 23rd a day " to commemorate the lives lived by people with disabilities who were locked away, who ARE locked away from full participation in society. It was also established to remember those, our elders, who have worked tirelessly for inclusion and access, for the word 'all' to actually mean 'all'."
   His story as to why he chose this date, posted last year, is also telling:
 "I have always, for example, marked January 23rd in my calendar as a day to remember. Let me tell you why. Sandra Jensen was a woman with Down syndrome who was denied a heart transplant because of her disability. It seems that people thought that a perfectly good heart should go to a perfectly good person - and though Sandra lived a life of quality and contribution, she was not considered. In fact, a transplant had never been given to someone with an intellectual disability. They didn't know who they were dealing with.
  Sandra was an advocate and she began. She fought against prejudice. She fought against stereotype. She fought against hatred. Her message was one of hope and power. She wanted her life to be valued. She wanted everyone to know that she loved living and the she rejected any notion of 'better off dead'. She stood for all people with disabilities. She stood for all to be valued. She fought and she fought hard. And she won. On January 23rd, 1996, she got her heart."

   I am planning on writing a special post for that day. And please spread the word. Because the battle for full acceptance of those with disabilities is far from over.