My sister, Debbie Burnstein, a”h, passed away in December, at the age of 66. Debbie was developmentally challenged and lived in a group home just about her entire life. She was raised in a generation when people didn’t talk about children who had such challenges. They were “put in the closet,” so to speak. But my parents were not like that. Unfortunately, their family and friends did have that mindset, so my parents had it hard. Even our relatives, as wonderful as they were, never called and asked, “How’s Debbie?” or “Where are you putting her?” And my mother was too uncomfortable to tell them that they had to put her in a non-Jewish place.
It was not unusual
in those days for a doctor to dissuade parents of developmentally disabled
newborns from bringing them home; institutionalization was advised, instead.
Although my parents didn’t hide Debbie, her autism didn’t make it any easier
for them to take her out. There were no Jewish schools or programs for her to
attend, so when my parents could no longer manage her at home, they started
shopping around for an appropriate placement.
Even though my
father, Rabbi Simon Burnstein, zt”l,
was a very confident, well-respected, adam gadol – a Rav in Washington,
D.C., to whom people came from all over to ask shailas – he didn’t want
to pasken for his own daughter. So he went to Rav Moshe Feinstein, zt”l. When he told Rav Moshe that they
had no option of sending her to a Jewish program, he told my father, “She is a
sick girl, and you treat her accordingly and do what is best for her. You can’t
worry about the frumkeit and kashrus part because she is not mechuyav
(obligated) to observe Yiddishkeit.”
Debbie lived in
non-Jewish group homes even until she was hospitalized shortly before her
death. Although they were all very clean, well set up, and the best places for
Debbie’s needs to be addressed, there was nothing Jewish at all for her in any
of them, and it was painful for my parents. They tried to bring her home and
send things when they could.
I am one of six
siblings. My sisters live in New Jersey, and our only brother, Rabbi Naphtoli
Burnstein, lives in Cleveland. After my parents died, my siblings and I did our
best to constantly call and try to visit Debbie. A few years after our second
parent, my father, died, in 1980, I sat down with one of my sisters, and we
decided we had to take charge. I became legally in charge of Debbie’s medical
needs, and another sister was in charge of her finances.
About six weeks
before Debbie passed away, she was hospitalized at Johns Hopkins Hospital
because of a ruptured intestine which caused a terrible infection. I was
awestruck by the care that she received in the Weinberg ICU. The nurses and
doctors were beyond exceptional; whoever heard about the things they did for
her there couldn’t believe it. The nurses really went beyond the call of duty,
making Debbie comfortable and doing everything possible. The doctors had the
patience to discuss her medical care in layman’s terms with me, repeating it if
necessary. They treated her so nobly, like she was a VIP.
When we first met
Debbie’s surgeon, Dr. Fang, she said to me, “If I don’t operate on her
immediately, she will die in the next two days. If I do operate on her,
she may die in the next two days.” That was my introduction to Dr. Fang, and my
first reaction was a negative one. I thought she was a cold doctor who was
putting me on the spot. Dr. Fang turned out to be one of the most magnificent
doctors I’ve ever met; she was caring, nurturing, and very professional. She
was in charge of Debbie’s care and made sure that every possible necessary test
was done and that every possible specialist came in to see if they could do
something for her.
Debbie was on a
ventilator during most of her hospital stay, so she couldn’t even express
anything. As soon as she could, since she wasn’t a speaker, she would give
one-word yes-no answers; she never expressed herself in sentences. Her nurses
were just as wonderful as her doctors and always friendly. If I said, “I’m
sorry I am bothering you,” they would answer, “You are never bothering me.” I
don’t even know how to thank them enough. Since they had to ask me for
permission regarding anything they did, I got a call, one day, from one of
Debbie’s nurses who asked if she could take my sister outside.
“Take her
outside?” I asked. “She is lying flat on her back and has all these tubes
coming in and out of her. You want to take her out?”
She answered,
“Yes, we want to take her out; it’s a nice day and we want her out in the fresh
air a little bit.”
I told her, “She
doesn’t even have a coat.”
She assured me
that they wouldn’t take her out without being warmly dressed. They took her to
the rooftop of Hopkins – where she had landed in the helicopter after being
transported from the hospital she was in previously. I am sure she had no
recollection of that. She was able to see the Baltimore Harbor; it was a
beautiful clear day. The nurses did this on their time. She was only up
there for 15 minutes, but it was such a breath of fresh air for her, just to
get out of her room.
December 6 was
Debbie’s birthday, and I had to get special permission because of COVID to
allow me in the hospital to visit her. They did make an exception;
actually, they let me visit four times. Right before her birthday, I told one
of her nurses that her birthday was coming up and that I wanted to sing “Happy
Birthday” to her. She suggested that I Zoom it, offering to set that up for me.
On Zoom, I was able to include my other siblings, too. We sang and spoke to
her, but kept it short, because we didn’t want to take the nurses away from
their work.
One nurse even
stayed late to give me a report which did not come in during her 7-to-7 shift.
When I questioned, “It’s 7:45. Aren’t you supposed to be off?”
She answered, “I
promised to tell you; I have to keep my promise.” Not only was it wonderful
because it showed that she really cared, but she also gave Debbie extra
attention knowing that she was developmentally challenged.
The day of
Debbie’s death – we all knew it was happening – Dr. Fang called to tell me that
she was upset and that she shared my grief. She also told me that she knew
there were a few times when it looked like things could get better and,
regrettably, didn’t. I know she went beyond the call of duty to make sure to
try everything possible. Remember, this is a “child” who was developmentally
challenged. I think in the olden days, Debbie would have been totally forgotten,
and they would have done the minimum. Instead, she got the maximum. It was
unbelievable.
Things are so
different today. There are seminaries and other special programs for kids who are
like Debbie, and everyone is very accepting. Some of these kids have made it in
their own world. They are different – they are not going to be the same – but I
look at it from a religious point of view: This is what Hashem wanted, and
Hashem wants us to do our chesed to make these children feel welcome.
They are His creations, too, and we have an obligation to do the best we can
for them and service their needs.
Right after
Debbie’s levaya, which was on erev Shabbos in New Jersey, we
spent Shabbos in New York before I returned to sit shiva in Baltimore. We stayed with our children, both of whom are
professionals and have large families of their own. One of them also took in
two Down syndrome foster children, from the time of their bris. They do not get paid by the City or the State; they are doing
it out of love and commitment. I am so proud of them. Their other children view
these two babies as their brothers, and the neighbors are friendly and
supportive. I’m also very thankful that my special-needs twin great-grandsons
in Cleveland have become warmly accepted and helped by their neighbors,
friends, and family, as well.
People now
understand who these special-needs children are, and they reach out to them,
feeling that we have an achrayus (obligation) to do the best we can for
them. Today, we can all be proud of the Baltimore Jewish community for its
programs, organizations, and schools, such as Menucha, Jewels, SHEMESH, Gesher
LaTorah, Yachad, Kodem Kol, and those schools that have made accommodations for
developmentally-challenged students, such as Bais Yaakov, Beth Tfiloh, Bnos
Yisroel, Krieger Schechter, Ohr Chadash Academy, Talmudical Academy, and Torah
Institute. (SHEMESH also consults, as needed, for Cheder Chabad and Toras
Simcha.)
This would never
have happened 55 years ago. Never. The world has
changed; it is a totally different generation. The Jewish world has done a big
turnaround, thank G-d. I marvel at it, and it is heartwarming!
