“This is the task Hashem has entrusted me with,” I answered them simply. “To care for this precious soul”

To my dear son in Gan Eden,

Iwould like to share some wonderful news with you. I have just become a great-grandfather! I can hardly believe that your older brother, my bechor, is now a zeidy. It seems like yesterday that he was born.

It seems like yesterday that you were born, too, even though 29 years have passed since then, and 15 since you left us.

When you were born, we named you Yehosef Eliyahu. Yehosef is a unique name, and you were a unique child. Yosef Hatzaddik merited the addition of a hei from Hashem’s Name into his own because he exhibited supreme self-control in resisting the wiles of Potiphar’s wife. Only Hashem saw Yosef’s struggle; only Hashem knew of his hidden righteousness.

You, Yehosef, were hidden as well. You were born with a flat nose bridge and other facial abnormalities, and you refused to nurse. The doctors weren’t sure what was wrong with you, but they told us that it was serious and that you wouldn’t live past three months. Yet I knew that when the Gemara says that Hashem gives a doctor the power to heal, it means that this power is all the doctor is given. The power to say when a person will die is only in Hashem’s hands.

Shortly after your birth, you began to experience convulsions. Your mother and I were very worried, and when you were two months old, we were told to add the name Chaim (life), which we did. But the seizures continued, rapidly increasing to about 20 a month.

You were born in Yerushalayim in 1991, shortly before the Gulf War. I was working at the time on an English Torah project, but because of the general instability in Eretz Yisrael, funds dried up at many local Jewish institutions, including the one I was working for. Finding myself out of a job, I took a position doing kiruv and community building in Tzfas.

You were eight months old by that time, having already significantly outlived the doctors’ predictions, and you had just received a diagnosis. Back then, genetic testing capabilities were nowhere near what they are today, and we had to wait months for results of your tests to come from Rambam Hospital in Haifa, at the time the only hospital in Israel that was equipped to do this kind of testing.

We were told that you suffered from a genetic disease so rare that it didn’t even have a name, only a description: Ring Chromosome 14. Actually, 14 was a curious number in your life. You ended up living until the age of 14, far outlasting your original medical prognosis. When we received the diagnosis, I immediately thought of the numerical value of the Hebrew word for hand, yad, which is 14, and took this as a sign that everything that was happening was from Hashem’s Hand.