Miriam was born on my 25th birthday; she weighed 5 lbs. 6 oz. and was 15 inches long. We were overjoyed that our two boys had a baby sister. Hours after her birth, she was diagnosed with spondyloepiphyseal dysplasia, an orthopedic disorder that would result in dwarfism. We thus entered the unknown world of skeletal dysplasia. These were the pre-Google days. We were sent home 24 hours later with some photocopied pages from a medical journal and instructions to take her to the genetics clinic at Johns Hopkins in the next several weeks. We were told that our baby girl would have extreme short stature, delayed gross motor development, and possibly other health issues. Nevertheless, her prognosis to lead a full, normal life was excellent.
The early months
were full of anxiety and confusion. This diagnosis was, to our knowledge,
unprecedented in the frum community.
Why would Hashem create our child (or any other) with these obstacles? The
non-Jewish doctor’s perception of a normal life did not necessarily align with
our aspirations for our daughter as a bas
Yisrael. We resolved to take one day at a time and raise her as normally as
possible.
By the age of seven
months, although she had developed cognitively, Miriam had achieved very little
in terms of gross motor development. Her physical growth was very minimal.
“Coincidentally,” one of the top doctors in the world for skeletal dysplasia
was located only 20 minutes from us at St. Joseph hospital. Since we lived
locally, the doctor gave us an appointment despite his long waiting list. After
a lengthy exam, the doctor gave a big smile and said, “She looks fantastic!”
I was puzzled. I
informed him that the clothing she wore home from the hospital was still too
big for her and she couldn’t even pick her head up yet!
He responded, “She
breathes on her own!”
I said, “So can a
lot of other people!”
He stared at me
for a long time. He then softly stated, “It’s very important that you
understand this. As a doctor, I know how much else could be wrong and how much
else should be wrong! I see you think
that G-d forgot your child. I can tell you that G-d’s eyes have not been off
her for a moment!” I left the office more confused than ever.
* * *
As Miriam grew
from baby to toddler, it became clear that Hakadosh
Baruch Hu had gifted her with exceptional intelligence and problem-solving
skills. Since her arms were too short to support her upper body to crawl, she
rolled around for mobility. She held large books in her feet while lying flat
on the floor so she could see the pages. She easily transitioned from a public-school
early intervention program to a local daycare to Bais Yaakov. Baruch Hashem,
she excelled both academically and socially. Other than undergoing several
orthopedic surgeries, Miriam’s childhood was fairly routine. Her bubbly,
humorous yet introspective nature made her a favorite among her peers and
teachers.
Miriam’s
disability was rarely a topic of discussion, but she would face up to it when
necessary. We were actually taken aback when we saw Miriam with her friends; it
was only then that we noticed her unusual appearance. In June of 2009, we
attended a convention in New York, where those with skeletal dysplasia and
their families could meet and gain medical information, as well as other
resources and support. Miriam attended a workshop for teens. At the workshop,
the facilitator stated how this space was where those with dwarfism could fit
in and not be viewed as different. When it was over, Miriam stated that it was
at this event that she felt out of place as a bas Yisrael dressed
considerably different than the other teens. She said that she fit in way
better at Bais Yaakov!
When Miriam was eight
years old, she asked me where in davening
we thank Hashem for being able to walk. I told her that this is in “Hameichin
mitzadei gaver.” Miriam told me several days later, “During davening today,
when we said “Hameichin mitzadei gaver,” so many girls were not paying
attention! They just don’t understand how grateful we have to be for being able
to walk!”
Miriam enjoyed
many summers at Camp Simcha Special both as a camper and a staff member. She was
determined to achieve all the typical milestones of a girl her age. She
confidently sang in choir, attended all school activities, went to sleepaway
camp, and, after she got her license, drove her adapted car. She surprised all
the naysayers and went to seminary in Israel for not one but two years. Upon
her return she got a master’s degree in special education and became a
successful and much-loved special educator in Lamdeinu, TA’s learning
center.
Miriam understood
that her disability put her at risk of having difficulty finding a shidduch.
Since she might not have children of her own she wanted to play a role in chinuch
habanim in whatever capacity she could. She was repeatedly told to be
realistic, which meant accepting a shidduch where her husband would be
functioning on a lower level than her. I was certain of one thing: If Hashem
had a husband in mind for Miriam, then he would be a zivug hagun, someone who was suitable for her. B”H, the Ribono Shel Olam, the
ultimate Shadchan, sent her her chashuve
husband, Mendel. It was then that she embraced the world of Chabad, where she
was welcomed with open arms.
Miriam did not
want to follow the Chabad derech just
because it was her husband’s mesorah.
She sought to understand its roots, its approach to ruchnius, and its application to modern society. She and Mendel
studied Tanya and the Rebbe’s Sichos
nightly. They had made plans to do shlichus
in Pasadena, Maryland to educate unaffiliated Yidden.
* * *
We are humbled at
the credit we have been given for Miriam’s success. Many have said that Miriam
acted normally because we treated her that way. I believe that it was the
opposite. She acted like any other girl at her age and stage, and therefore it
felt natural to treat her like everyone else.
There were so many
others who were part of Miriam’s chinuch besides her parents. We will be
eternally grateful to our extended family, who adored her from day one, our
neighbors, the shul, Bais Yaakov, Camp Simcha, Kids of Courage, Yalla, as well
as the exceptional doctors and therapists. Upon the onset of Miriam’s sudden
and unexpected illness, we were touched at the hundreds of people in Baltimore,
Crown Heights, and beyond who said Tehillim and undertook various kabbolos
in her zechus. I am confident that these mitzvos will bring individual yeshuos and will benefit
all of Klal Yisrael. The loss and pain caused by Miriam’s petira
is felt way beyond our family and the Baltimore community. She understood that
her tafkid (task) in this world was not standard, and she strove to
achieve it. We take comfort in the knowledge that she was successful in her 30
years.
Sidebar
My Sister, My
Friend
by Devorah Ungar
Since Miriam’s passing, she has been
very much in the public eye, and it is all coming out about how she inspired so
many from afar. To us as a family, and to me as a sister one year younger than
Miriam, she was simply Miriam. We knew she was smart, outgoing, a deep thinker,
and a singer, and all that stood out more to us than her differences.
While we were growing up, Miriam’s being
different was not necessarily talked about, but it was never shushed. Miriam
was very pragmatic and was never afraid to discuss her short stature. She was
obviously aware of it and the challenges she faced because of it, but she never
expected the world to tiptoe around her. When I was a baby, I was already
significantly taller than her.
In all the years, I do not
remember Miriam saying that she did not want to go somewhere or be a part of
something because looked different than everyone else. When we were children,
many people would stare at her and ask me questions. As a proud sister, I would
respond “Why don’t you ask her? You’ll see, she can talk for herself!” I think
I was more insulted than she was. As an adult, Miriam embraced children’s
questions of “Are you a mommy?” or “How old are you?” She never took the
children’s (or adults’) curiosity personally and always answered them patiently
and kindly.
We did everything typical sisters do
together, except share clothing. In Bais Yaakov Elementary, Miriam rode an
electric scooter, similar those found in grocery stores, because it was
difficult for her to walk throughout the school. One time, when we were around
9 and 10, we had the scooter at home, and Miriam and I decided to ride it
around the neighborhood to sell Bais Yaakov chocolates. We somehow got it stuck
in a crack on the sidewalk. Between Miriam maneuvering the scooter and me
trying to lift it, we popped it out of the crack and continued on our way! She
used to proofread my papers in exchange for ironing her hair for Shabbos
because she couldn’t reach the back.
Our house ran normally. In
retrospect, it was far from typical to have a low sink installed in a cabinet
in the kitchen, sticks attached to light switches, an extra railing by the steps,
and other modifications that my parents put in to enable Miriam to be
independent. My parents and Miriam, as she got older, always figured out how to
get around the roadblock instead of getting stuck behind it. Nothing stopped
her. It was just a process of brainstorming how we were going to make it
happen.
Miriam was extraordinary by being
ordinary – by doing things that we all want to do growing up. Miriam sang in
The Shira Girls Choir, was G.O. president, was choir head in high school, went
to sleepaway camp and to seminary, and toured many places in the world.
More recently, as an adult, Aunt
Miriam was the most devoted aunt our children could have. She treated our
children and those of my siblings like her own. She came to visit my son in TA preschool
to attend any special activities of his class – and sent me pictures, of
course! She would read the kids books for hours and tell them stories that she
created. Just this past June, Miriam and Mendel took a middle-of–the-night
train from Crown Heights just so that Aunt Miriam could be in Baltimore to
attend my son’s preschool graduation! Though she left this world before having
children of her own, she has an army of precious students and nieces and
nephews who have gained from her and will, iy”H,
continue her memory in the future.
Missing Miriam
by Kayla Fink
Miriam and my husband Naftali had an especially
strong relationship as siblings. It’s noteworthy that the older brother often
looked to his younger sister for advice, but Miriam imparted a common-sense
wisdom that many admired. Miriam treated her young nieces and nephews as if
they were her own, always interacting with them with infectious enthusiasm. In
turn, the children, including our Shana and Dovi, adored their Aunt Miriam. One
Miriam’s qualities was that she saw only the positive in others and not the
negatives. Miriam sincerely cared about all the people with whom she interacted.
We deeply miss her in our lives.
