Today’s blog is inspired by a story I read by Robby Berman, director of HODS, the Halachic Organ Donation Society. He posted on Facebook about a woman whose life was saved as a baby because at the last moment someone donated an organ that she needed. The article mentions that the hospital had so given up hope that they told the family to organize the burial.
Three years ago, my son was on the edge of kidney failure. We were in the process of testing a donor, but running out of time. I don’t know if I will ever be able to describe the feelings of a mother who is watching her child wasting away. Asaf was on a very restrictive diet to try to slow the progression of his disease. No whole grains, not too much protein, no mushrooms, no chumus, no most everything in order to lessen the work that his kidneys would have to do. After meeting with a nutritionist the previous July, she put 2 servings of ice cream into his diet in order to give him some calories!
Inevitably, the condition of his kidneys worsened. You see, once the kidneys become too damaged, there is no hope that they will regenerate. You live with a time bomb – when will they give out? When will dialysis be necessary? Remarkably enough, kidneys continue to function “well enough” until they fall below 10% of their capacity. Imagine if you only took one breath in 10, or your heart only beat one out of ten times? Remarkable that the system can live with so much dysfunction.
And then came Passover.
Passover was really the tipping point. You see, on Passover, Jews are not allowed to eat any bread or pasta. No products made from wheat which has been allowed to leaven at all. The unleavened bread, matza, is made from whole wheat flour which is mixed with only water and baked very quickly (within 18 minutes). Asaf was allowed to eat wheat flour, but only bleached, white flour, as the processing done at the bakery meant that his kidneys did not have to do that work. So matza was out. Other carbohydrates, such as rice, are not eaten by Ashkenazi Jews, as these products were once feared to be confused with wheat products. But without rice, Asaf’s diet would be really lacking, so we obtained Rabbinic permission for him to eat rice. Asaf has never been one to look for or appreciate special attention, though, so he did not want to stick out from the family. He wouldn’t eat the rice. And as a 17-year old, there was nothing I could do or say to make him change his mind. He would eat the same food as the family, more or less.
Turned out to be less, and the less he ate, the less he wanted to eat. To be fair, his disease was progressing, and one of the side effects of kidney failure is decreased appetite. I waited. And he was wasting away in front of my eyes. And there was nothing I could do.
So, what does this story have to do with a blog about Israel?
Israel is a unique place with unique people. Israeli’s are traditionally compared to the prickly pear fruit. Prickly pears (Sabras) are immigrants from the Southwest United States. They came with the explorers in an attempt to provide cheap dye. (That story I will save for another time….) If you have ever tried to eat a prickly pear in the field, you will find out quickly that the outside is surrounded by pervasive prickers. If you are persistent, however, and can push past the exterior, you will encounter a fruit which is very gushy and sweet inside. So too with Israelis. Most have an immigrant past, tend to be kind of gruff on the outside, but once you break through, are very soft and sweet inside.
When we discovered Asaf’s illness, and realized that there were no potential donors from within the family (his is a genetic disorder), we turned to our community. I don’t know if this would happen in other places, but from our small community of 500 families, 8 individuals came forward to undergo the initial testing to donate their kidney to Asaf. We started with the first person who submitted blood work and ultrasound and by that Passover had been through a lot with her, including hospital testing, psychological testing, and national committees. We were almost at the end of the road, and her approval seemed imminent when a small glitch showed up in one of her tests. This was shortly before Passover. I tried to get a rush appointment for her, but of course, it was Passover and the hospitals were on holiday schedule. I lived in fear that we would lose our spot. That the transplant would not come in time. I went to the hospital to try to get some help from the transplant coordinator. She was adamant, she had given up our spot, the donor needed the appointment and the approval of an appropriate expert and our surgery date was gone, maybe we would get a date in a month.
I lost it, I cried. Months of frustration and worry. Myriad of trips to the HMO, to the hospital, to more doctors than I cared to remember, more pieces of paper, approval for all kinds of tests.
And then my gruff, Sabra coordinator got on the phone. She said she couldn’t take my tears, that something needed to be done. And somehow, someway, a doctor who could read the test was found, and an earlier date was scheduled for the surgery.
Every year at Passover, I am reminded of the miracle of redemption which happened for my son. Today, thank G-d, he is well. He is serving as a volunteer in the Israeli army doing tactical support. He is thinking about staying in the army for another year, or going to university, or traveling the world – just like his Israeli peers. The donor is also doing well, thank G-d. We will celebrate with her on the date of the surgery – 32 days after the first day of Passover, and as I sit next to Asaf at the Seder table tomorrow night, I will be thankful of the gift of a healthy son. It gives a new meaning to the blessing we recite at the beginning of the meal.
“Blessed are you, our G-d, King of the world, who has kept us alive, sustained us, and brought us to this point in time.”
Happy, Healthy Passover to all !