Tuesday, May 19, 2015

Why I Am a Zombie

There are times when life is hard and that's just how it is. There are other difficulties which are unnecessary and on top of everything else, can drive anyone crazy.  One would think that my most significant problem is that my husband has ALS. We have 7 children from the ages of 8 - 18. They are wonderful and special and scared and hurting. Yes, that is the most significant problem we face, but not the most difficult.  We have a nurse problem. For the past 6 months the agency which we use (covered by the medical waiver program) has been canceling on us left and right. Some times they give us notice and sometimes they don't show up. Sometimes I find a replacement and many times I do it myself. That means up all night at least once a week and sometimes many more times. When we find a replacement it is out of pocket, and that is an additional difficulty. This week out of 14 shifts they are supposed to cover, only 6 are covered. We have been working with other agencies and in 6 weeks they still cannot find FOUR nurses. So  if you see me, and I am a wreck, be kind. If I forget parent teacher stuff, forgive me. If I can't remember if we've met before, just let it go. I am tired. My kids need me and not only is their father unavailable but so is their mother (insert guilt here). My problem is, this shouldn't be a problem. There are agencies that get paid to do this and they just don't. I am fortunate that I don't have to make a choice between feeding the family, paying medical bills and abandoning my husband. There are people who have to work to live and leave their loved ones alone and in great danger. Lucky me, I can just cancel everything and stay home. That being said, we have had some wonderful nurses, but the overwhelming majority are the most flakey, irresponsible people I have ever met. I could write a book of what we have endured the last half year. There is no reason for any of this. A few more dollars and personal accountability would go a great distance. If there was a database that all nurses are entered in, anyone can tell if they are reliable or not. If you don't show up to your job, you shouldn't be able to find a new one tomorrow. It seems like people have forgotten that they are dealing with human beings. I understand that the state would like us to send my husband to a home, and therefore make it very difficult to get proper care, but that is not the value system this county was founded on. Family is important, dignity is important, responsibility is important and of course, sanity is crucial.

Wednesday, May 6, 2015

Our Little Angel - Chaya

This week our special friend Chaya Shpalter passed away. She was one of the most incredible people I have had the pleasure of knowing.  She touched more people in her 11 years then most could. We loved her and we will miss her terribly.

Here I sit with my pen and paper, trying to put a broken heart to words. We moved into an apartment in Los Angeles just under two years ago. Right across the hall from Chaya and her family. Chaya and my daughter Chava became friends rather quickly. They got that life is full of challenges and there was no pretending here. They also got that being happy and positive made everything better and more meaningful. Chaya came over every Shabbos and became part of our family. When Yitzi came home from the hospital he was hooked up to a ventilator 24/7. Most of the kids were quite intimidated by this. Not Chaya, she just marched in with her beautiful smile to visit him. She came every Shabbos and together with my daughter sang songs and made dances for Yitzi. They called it their "show". Sometimes other little girls would join in, but always Chaya and Chava. When my daughters were not in the mood of entertaining my husband she would jump up and say, "Let's do a show!" She saw how tired I was and made it easy for the girls to spend time entertaining. We had to put my husbands beard in a pony to keep away from the tubes, Chaya walks in and takes one look. With a twinkle in her eye she says "Rockin beard". Yitzi twinkles right back at her. Chaya was not just my daughters' friend, she was my husband's friend and we all loved her for it.
For the past month, my kids have had the Chicken pox. I kept them locked inside so nobody else would get it and in the process, they couldn't see Chaya. We had no idea how bad things were. When we heard that Chaya had returned to the world of truth, we all cried bitterly. But no one as hard as Yitzi. He cried for hours and days. He cried out to HaShem "How could this happen?  Why Does HaShem continuously break us?"
I don't have words of strength or inspiration. I am heartbroken. But I am also so grateful. We got to know an angel.

Friday, May 1, 2015

Choose to focus on the good

This week the earth itself trembled. We watched tragedy unfold followed by the rise of the human spirit in a most beautiful way. People helping people. Racing over from countries far away to save lives, because it's the right thing to do. Opening your hearts, your homes, and your pockets for fellow members of the world. Fixing problems that need fixing because you can, and then praying for G-d to fix what you can't. The best side of mankind pouring forth.
In other parts of the world we saw less then the best parts. Destruction of people's livelihood, their city, and their safety. When you protest the loss of life by trampling on the lives of innocent people, you have missed the point. Lives matter period.
So why the difference?  When nature strikes, we gather together like brothers. We sacrifice our own safety for that of our brothers and sisters. We rise above our differences for a common good. When one man causes another pain, it divides us. We take sides and forget our common decency as our anger rises to the level of a raging tide that cannot be stopped. Not all of us do, but the ones that do are the loudest and the most destructive. We can almost think that it is everyone. But it's not. It's a few who are so angry, they lost their way. Perhaps we should choose to focus on all of those who are rebuilding, not destroying. All of the love going around, not hate. All of those giving to others, not taking from others. May this week be steady, strong, good, beautiful, bright, and full of love and good health. Shabbat Shalom.