I began to do everything I could to find out more about RC14, but in those pre-internet days my resources were limited. Only many years later would I discover an article, in a magazine devoted to rare diseases, about three children in the US, ironically all around your age, who also had RC14. I contacted my father, your grandfather, who lived in the US, and he reached out to all three families — one in New York, one in Washington, and one in Alabama. The one in New York was close enough for my father to go and visit.

Sadly, none of this was any help, as those children were not nearly as affected as you were. Those children could all speak, while you never spoke one word in your whole life. Those children could walk and run, while you never took one step. And they were aware of the world around them and knew who was who in their lives. As your father, I know that you, too, were aware on some level of the people around you, but anyone else had to be really sensitive in order to notice this, because on the outside you seemed oblivious.

Tzfas was a tough time for us. Your mother and I had to move four times in one year because of broken promises regarding places to live. I held down three jobs, which didn’t even cover our monthly expenses, and certainly didn’t leave me much time to be home and involved in your care. You spent half your day at the hospital’s school for challenged children, and when you were home you needed hours of attention: feeding, changing your clothes, doing your exercises, and more. Although my employers were all good people and helped us when they could, the stress — and loneliness — were overwhelming.

Poverty and physical sickness do not go well together. So when Chabad from Australia approached me with a proposal for us to move there, I was on the next flight out with your brothers, hoping to prepare a new home for our family in the land Down Under.

But this was not meant to be. The Australian immigration authorities were loath to issue a visa for a handicapped child, and I ended up staying in Australia with your brothers much longer than I thought, trying to make the arrangements for you and your mother to join me.

In the months that I was gone, your mother was alone with you in Tzfas, and she felt isolated, overwhelmed, and depressed. This left her vulnerable to a cult that had sprung up then in Tzfas with connections to a guru in India. Your mother was taken by the fake warmth and concern they offered her during that difficult time, and by the time I returned to Tzfas there was no marriage for me to come home to. Your mother decided that not only was she not going to move with us to Australia, but she also wanted a divorce.

I could not get her to change her mind, and we divorced shortly afterward in Yerushalayim. To my surprise, your mother gave up custody and moved back to the US, and I took over your care.

My mother had an apartment in Yerushalayim, and she very kindly moved out of it so that I could live there with you and your older brother, Jonathan, who was remarkably devoted to you and helpful with your care.

From the time of your birth, many people had pressured us to have you placed in an institution. Their opinions became exceptionally strong after the divorce, when I became a single parent.

“What do you need this for?” they would challenge me. “Your son doesn’t know who you are. And all you’re doing is changing diapers, washing clothes, taking him to and from therapy, arranging his special education schooling, dealing with doctors, trying new drugs all the time, and basically living in hospitals as a second home.”

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

It is true that we spent a lot of time in hospitals. I would chart all of your seizures, trying to find rhyme or reason as to when they would come next, and I was constantly checking the dosages of the medicines you were taking and looking out for new medicines and treatments that could help you. I think I knew almost every doctor and nurse in about three different hospitals.

I remember once running to the hospital in the middle of the night because I couldn’t stop your seizures. Upon arriving at the emergency room, we were greeted by a doctor who already knew me by name. Protocol required a blood test to check your medicine levels before any treatment was provided. This time, a new nurse I hadn’t seen before came to take blood from you. The three of us entered a small room with a bed, where she laid you down. But there was nowhere to insert the needle, as you were all tapped out from your previous visits, and I could see her frustration mounting as she tried to find a suitable vein.

Finally, she came up with the clever idea to hold your head down over the side of the bed so it would be lower than your body, causing the veins in your neck to bulge. It worked. And so there we were at 3 a.m., with this woman drawing blood from your neck.

Trying to be polite, she asked me where I was from. I answered, and then asked her the same. She reddened, looked at the floor, and answered, “Transylvania.”

Seriously? I thought to myself. Count Dracula’s great-granddaughter is taking blood out of my son’s neck?

It was lighter moments like this that gave me the strength to keep going, even though I was basically alone. I was particularly heartbroken when my father, a wealthy Jew, died and left your brothers some of his inheritance and nothing for you.

It was a shame, because I wanted to buy you a newly designed chair that would have allowed you to sit better when you ate. Sadly, I couldn’t afford the $5,000 price tag.

I was anxious to remarry, and had no shortage of women who were willing to date me. When push came to shove, however, none of them were ready to take on your care. But I never saw you as an impediment to my future happiness. The right woman, I knew, would be the one who would marry me because of you, not despite you.

And then, one day, she appeared. The first time I brought her to see you, after we had been dating for a while, she sat down right next to you on the floor, on the special play area I had set up for you, and the two you became instant friends. After five minutes she didn’t even remember that I was in the room. We got married and are still married 22 years later.

In no time flat she was no longer your stepmother, but your mother. She would bathe you, dress you, and watch out for you in every way. I couldn’t have asked for more. With her in the house I felt as though I was coming back to life. Your brothers were delighted with her as well.

Several years later, your physical situation began to deteriorate. Until then, you had been able to crawl and hold a bottle, but now you could not do that anymore. But you could still smile, and even laugh. And that was magic for people.

When we took you outside, people’s reactions to you varied greatly. There were those who tried their best to hide their inner recoil and horror. Sadly, some of these were religious people whose understanding of the world is purely superficial, and who assess people solely by the way they look, dress, and act. You broke right through their pious façade and revealed their inner self — a self that left much to be desired in terms of real spiritual growth and character. And then there were the refreshingly holy people, those whose outsides are a true reflection of their insides. These were the rebbes who would lift you out of your chair and give you a hug, pinch your cheek, or just hold your hand.

Most interesting were the reactions of my own friends. Some of them felt so awkward around you that they distanced themselves from me, whether abruptly, when you were born, or gradually, over the years. And some, like your stepmother, were so drawn to your pure and holy neshamah that in addition to offering to help me, they would actually come to the house just to spend time with you.

At first I couldn’t understand why. On the surface, at least, you had nothing to give, nothing to say. But eventually I realized that your silence said more to them than probably their best friends or family could say. Your silence said, “I don’t care if you are man or a woman, if you are chassidish, litvish, Sephardi, or Ethiopian. I don’t even care if you are Jewish or not. I can simply embrace you because you are the handiwork of G-d, just as I am. If you are good enough for Him, you are good enough for me.” You could just “be” with them and accept their love, with no place for judgment or criticism.

Sadly, I’ve found that very few people ever find the time or place to just be — to embrace their own innate goodness and recognize that all flaws and handicaps can be overcome from drawing upon that inner place of truth. You gave people that opportunity.

You taught me that lesson, too. In many ways, I think of you as my rebbi, and I consider myself your student.

You see, I grew up during the hippie generation, with the mantra, “I’m okay, you’re okay, we’re all okay.” That mantra was completely turned on its head when Hashgachah somehow led me to the Ohr Somayach yeshivah in Yerushalayim in 1974 and I found myself becoming a baal teshuvah, one of the pioneering backpacker-to-black-hatters of those early days of the kiruv movement. On one hand, I possessed the innocence of having had no Jewish education, and I therefore consumed the Torah’s wisdom with a tremendous hunger. On the other hand, I had no filters or guidelines to understand what was real Torah and what were simply cultural Jewish trappings that sometimes obscured the Torah’s light. I remember once telling one of my rebbeim that I didn’t think I could ever become a Torah Jew because I didn’t like much of the Eastern European Jewish food being served in the yeshivah. Discovering that a taste for gefilte fish and chrein or shmaltz herring and kichel was not a prerequisite for frum living was a relief. Yet differentiating between authentic Torah values and mere social norms would remain a lifelong challenge for me.

Not wanting to remain an outsider, in my early days as a baal teshuvah I was willing to crush much of what I intuitively knew to be correct in order to toe the party line and find acceptance in frum society. Suddenly my world had become very black and white, in more ways than one. How comfortable it was to have a clear definition of who was destined for Heaven (black-hatted people like me) and who were the bad guys (non-Jews, nonreligious Jews, and even religious Jews with “treif” beliefs). I fell prey to the cultural mindset that classifies people according to what they wear, what chumros they follow, and what part of the world their ancestors hail from.

My roshei yeshivah tried to fight this intellectual virus by teaching that chumros are things we should accept quietly and humbly upon ourselves, in our quest to grow closer to Hashem. Leniencies, on the other hand, are the glasses through which we should view others, as we bend over backward to judge them favorably. More importantly, they taught, even when condemnation is in order, our job is never to condemn people, only behaviors and beliefs that are at odds with Hashem’s expectations.

From you, my son, I learned to stop categorizing people as “frum” and “non-frum” and to avoid using derogatory descriptions of people, whether Jewish or not. Since I spent so much time in your nonjudgmental presence, I slowly learned not to assume that I am automatically right and the other person is automatically wrong, but rather to understand that we are both probably a combination of good and bad.

We celebrated your bar mitzvah at HaTenneh, the school for children with special needs that you attended. It was amazing to see all your classmates, your teachers, and dozens of family friends showing up to celebrate with you, even though we had no way of knowing what the occasion meant to you.

Around this time, your biological mother moved back to Eretz Yisrael and wanted to get to know you. Legally, I had sole custody, but your angel of a stepmother warmly welcomed your mother, allowing her to spend time with you gradually at first, in our home, and eventually sharing you fifty-fifty.

Until one day, I got a frantic call from your mother telling me that you suddenly couldn’t breathe. She quickly called an ambulance, and I came rushing over from work to find her on a bench, holding you on her lap and crying, just as the ambulance pulled up.

Shortly after we arrived at the hospital, your neshamah departed. I began to cry so loud that the entire children’s ward went silent.

We laid you to rest on Har Hazeisim, overlooking Har Habayis. On your tombstone, in this holiest of cemeteries, we inscribed the Hebrew pasuk, “Who may ascend the mountain of Hashem, and who will establish himself in His holy place? One with clean hands and a pure heart, who has not sworn in vain by My soul and has not sworn deceitfully.” We thought these words were most befitting for a person who had never spoken an evil word or wronged another in his life.

Naturally, I sat shivah in our home. Most unnaturally, your angel mom was concerned about your mother having to sit shivah alone, so she asked her to move into our house for the full week of mourning. During the day, your mother, my ex-wife, received guests in one room in our house while I sat in another room. Your angel mom ran between the two rooms making sure everyone had food and drink. If only I could have videoed the faces of the people who came to the address listed on the shivah notices to console your mother and realized they had just walked into my home.

It was the perfect tribute to you — you, who were never involved in any strife, and whose neshamah returned to Heaven as pure as it had descended.

During the shivah, every kind of person, from super religious to completely nonreligious, and even non-Jews, flowed through our house. In your life, it seemed, you had accomplished something that even the most gifted speaker couldn’t have done — you had shared the value of acceptance, love, and concern, and showed that there really is no place for self-righteousness, judgment, and anger in our dealings with one another. And now you were free to go to your real home in Heaven, where you could speak and understand the language spoken there: the language of absolute truth.

Life moves on, Yehosef. In the 15 years since your passing, your brothers have grown up, grandchildren have been born, and, incredibly, I have just been zocheh to attend the bris of a great-grandson.

Thanks to you, I have close, loving relationships with all of your brothers, even though they have each chosen a different path in life. And while I am committed to carrying out Hashem’s will in this world, I have learned to respect other people regardless of their background or level of observance, simply because they were created in Hashem’s image.

Most of all, in your quiet acceptance of your own life circumstances, you taught me to embrace life and appreciate the many gifts Hashem has blessed me with, so many of which you never had. For that, I will always be indebted to you.

I look forward to our reunion in a more perfect world after 120.

With love,

Tatty

(Originally featured in Mishpacha, Issue 806)