(sorry
to start this with a downer, but I write with my heart, and right now
my heart is shattered)
BS”D
16
Adar 5777
Today
I write these words as we mark the 16th year of Yosef
Chaim z'l passing. I can't begin to describe the pure agmus nefesh it
is to look back and remember having to make the decision that
ultimately caused his death. How could a mother and father have to
decide (through our rabbis, of course), whether or not to continue
giving the medication that was barely keeping him alive? I know at
the time his heart was shutting down, as blood was not being pumped
to his extremities. How? How do I not burst into tears remember
laying next to him and trying not to cause him any pain, as his heart
slowly stopped beating. (It's not like in the movies, I'll tell you
that.) How do I forget that the nurse ran over to the morphine a few
minutes before it ultimately happened to up it, because he was in
pain? How do I forget the doctor listening for his heart beat, and
pronouncing him dead? And one of the worst memories that I carry
around is the pain my husband felt as both his father and rabbi had
to pull him away from the grave? HOW???
Yes,
I can try to focus on the happy memories. But for me, today, marks
the day that all the horrible experiences we endured come flooding
back. During the year, I am able to push these memories out of my
mind, but today, they bubble up to the top and spill over. The pain
so deep that it is mamash a physical pain, buried deep in my chest,
inside my heart. It is basically indescribable. That's what I am
trying to say.
Last night, I hosted a gathering in his memory. I held it in the bais medrash that the Yeshiva has dedicated in his honor. We heard from Rabbi Bart (via his wife as he was ill) who had started teaching Yossi the trup for his bar mitzvah. R' Menachem Sherman, a close friend of Yossi's, spoke about the mitzvah of writing a Sefer Torah. Yonatan, another one of Yossi's closest friends, spoke about memories, and also introduced the Sefer Torah Campaign. My father-in-law spoke so lovingly about his memories of Yossi. Finally, I stood before his parachos that bear his name, and this is the speech I delivered:
I'd
like to thank everyone for coming out on such a yucky night. Let
me start with, I'm not Yossi! I was going through his old work and
the many many letters we received (yes; I saved them all!). One thing
that totally amazed me was that when he was 12 years old, Yossi was
chosen to be a representative for Richmond Blood Services. He was
asked to speak about his bone marrow transplant experience. Yossi was
able to do it just from an outline on flash cards! Me, I need to read
it from my prepared speech. (A special thank you goes out to Dabney
who I believe helped to prepare him for this.)
Over
the course of my grief journey, I have met many other moms who lose
children of all ages. A lot of them have had the experience of losing
friends as well. People who dropped them after their child passed
away, or even having “friends” who crossed the street to avoid
them. My experience has been the exact opposite. I've had the most
lovely and loyal friends a person could ever hope for. They have
allowed to feel what I need to feel, and have never told me I was
wrong, or it's time to move on, etc. This past weekend, when I
struggled and was in a very dark place, they were there for me,
allowing me to crying on their shoulders, both literally and
figuratively. Even in my effort to “boycott” Purim, not one
single friend said to me that I was wrong. I think that this is
something that has helped me tremendously in my journey. I feel like,
Yossi's story is not really a story of one child. Rather, it is a
story of the entire Richmond community. A community who came together
as one, mamash k'eish echad b'lev echad. Yossi may have been my
child, but I believe that he was also everyone's child. Looking back,
I think it was such a beautiful thing. And yes, I do feel that that
alone was something “good” that came out of this whole ordeal. At
the time of Yossi's diagnosis 20 years ago, I had 4 kids and worked 3
jobs. (I taught at RTA, Hebrew school, and decorated cakes in my
“free” time.) It was a very hard balancing act as many moms will
tell you. Throw in a cancer diagnosis, and it became overwhelming.
One night, Perel said to me, “Please let people help you. YOU will
be doing a chesed to let them help, because they want to help”. We
all know how women like to feel like “you can do it all”. One of
the hard things about Yossi's illness was not being the giver, but
being a taker. It is very hard for someone used to giving to take,
but in the case, it wasn't only a chesed for everyone else, it was
totally necessary for me. So I stepped back and let others help us.
Meals were brought, the kids were carpooled … anything we needed
all I had to do was ask. Yossi was one of the vary rare cases who
chemo failed to achieve remission. It was the first time MCV had seen
such a case. We were immediately sent to the Bone Marrow Transplant
team. Even before we knew anything, people were already volunteering
to be tested!
To
me, achdus and ahavas yisroel go hand in hand. If you love everyone,
you will become one with them. The community joined together in a
tremendous showing of achdus. We had people who were religious, not
yet religious, not Jewish, Orthodox, Conservative, Reform, “nothing”,
atheist, every gamut of the spectrum was represented. That was one of
the amazing things that Yossi was able to do. He was able to strip
away the labels that divide us, and make us just people. We were
united in one in pain when things didn't go the way we had hoped, and
united as one in joy when they did. There is one unbelievable story
that happened before his transplant. Yossi was running a fever. It
was a very high fever, and the doctors weren't sure of the cause.
They had checked for all the normal causes and couldn't find the
culprit. They moved him to the ICU, and basically told us to prepare;
that this could be the end. Rabbi Ron asked everyone to fast, and
everyone gathered at RTA to say tehillim together. It was literally
at that the time that people were saying tehillim that his fever
broke, and he started on the road to recovery. Suddenly, things
started going right where before they had failed to work. Yossi was
well enough to go to transplant, and he did superb post transplant.
In fact, Yossi never had to go in-patient post transplant, something
that is almost unheard of. At two years post transplant, I was told
by a frum doctor in St. Judes, “He's cured! Make a party, paint
your nails, go out and celebrate”. Nine months later, everyone was
shocked to find out that he had relapsed. And once again, there was
no protocol for him. They were shooting in the dark trying to figure
out what to do until we could get him to transplant again. This time
we decided to go to MN.
With
the love of the community, we set off to MN for what we hoped would
be his cure. During this time, everyone stayed in touch with us via
Yossi's blog (although it wasn't called a blog then; there wasn't
even the word yet!). We were blessed to have visits from people in
the Richmond community. I will never forget nor stop appreciating the
sacrifice that both Noa and Rabbi Klestzick made for us. When I was
at my lowest point, feeling scared and alone, Noa asked if I wanted
her to come. I said yes, and there she was. When my kids needed to be
flown out quickly, tickets were arranged for my in-laws and kids.
Even at the end, when he passed away, Rabbi Ron asked us where we
wanted him buried. It was all arranged for us. How do you say thank
you to such love? How can words convey how much nechama we got from
the love around us? During Yossi's illness, prayers were constantly
being said. More than anything else, people were doing mitzvos. The
whole time I had always asked for people to do a mitzvah to give
Yossi another zchus, hoping it would tip the scale in favor of a
cure.
Towards
the very end, the doctors were repeatedly trying to convince us to
turn off the medication that was keeping him alive. I explained to
the doctor that every minute that he is living, people are doing good
deeds and he is accumulating them. This non-Jewish doctor joined us
by his bedside to say tehillim on the day we asked everyone around
the world to daven for him.
After
Yossi passed away, we received so many cards, emails, and notes. One
of the notes that gave me so much comfort read:
“Yosef
Chaim was able to endure for a long time while in b'olam hazeh.
Moreover, his levaya was delayed, allowing you time to return home.
Chazal teach that for each mitzvah a person does he acquires an
angel, who will precede him on his journey to Olam Ha'Emes announcing
the mitzvah. Certainly the gates are very wide, but it took a long,
long time for all the angels preceding Yosef Chaim to enter and be
machriz his mitzvos and middos, hence the reason for the length of
time.”
I
have fliers for you about the project I am launching.
This is a very special campaign that means so much to me.
Even though I didn't really believe that Yossi was going to die, near
the end, I climbed into bed with him. I kept kissing him, thinking
that I need to try to give him enough kisses to last a
lifetime. But who am I kidding? There is no way to do that. One of
the hardest parts of being a bereaved mom is having empty arms. Yossi
was so loving. He had a second sense for when I needed a hug, and he
would be there to give me one. This bais medrash,
these paroches, the library, they are all a beautiful tribute.
But I want, no, I need something physical, something that is totally
connected to him that can be held and loved. Many years ago, my
son Shauly once asked me to stop buying books for the
library, and to buy a sefer Torah. I was too scared to take that
commitment on. But it was there, in the back of my mind. I spoke
about it to others. One of my good friends reminded me last week that
I made her promise me that when she wins the lotto, she is using her
maaser to buy me a sefer Torah. Last year, on my Our Tapestry What's
App group, we were talking about my dream of buying a sefer Torah.
Several of the moms have already done that. They said to me that when
you bring the sefer Torah to shul, under the chuppah, it feels almost
like you are bringing your child to chuppah. Something that we never
get to do. Last Tishrei, my daughter-in-law Zahava's
brother celebrated his bar mitzvah. Many of you know that
normally, I do not attend bar mitzvahs, as they are just too painful.
This time, I went for my machatanester Malka, whom I love
dearly. As I was walking to shul Shabbos morning, I was berating
myself. “Why did I do this? Why am I such a glutton for
punishment.” I decided though that I would smile and be happy for
her. And I was. Until I her lovely son hugging the sefer Torah. I
watched Nesanel hug that Sefer Torah with such love in his
eyes, and I said to myself, “I NEED A SEFER TORAH FOR YOSSI”. I
need it for me. I need something physical in this world that can be
hugged and kissed to make up for all the hugs and kisses I am not
giving him. I need his neshama to have the aliyah from other's
getting called up, something he never got. This Sefer Torah is going
to be full of love and achdus, just like Yossi was. It is already
uniting together all different types of people. Yossi's childhood
friend Adam Lessin has been commissioned to write it. He feels so
close to the project, and it feels so special to have someone who
loves him to do it. The fliers have all the details, as well as a url
to visit. I'm looking to raise about $55,000. The goal is to have
this Torah here in this very room, in this aron kodesh, for Yossi's
18th yartzeit (if chas v'shalom Moshiach hasn't come
yet!).
Before
I finish, I would like to say Thank You to those who have already
pledged money. Yossi's good friends Yonatan, Menachem, and Avrummie
helped me with the committee to get this campaign started. I would
also like to say a extra special THANK YOU to Yonatan. He has been
working side by side with me tirelessly for the past two weeks to get
this campaign launched. He helped me with the many, many details,
giving ideas I would have never thought of. He has continued to amaze
me with his insightful thoughts and brilliant ideas. It is through
this hard work that I see his true love for Yossi, which is a nechama
to me. Some of my friends have a hard time seeing their deceased
child's friends. I have gotten a lot of nachas from watching these
children grown into adults.
And
with that, I was also hoping that some of the people who knew Yossi
could share memories of him with us tonight.
We
then shared memories, and Rabbi Kranz pledged money for the campaign,
and encouraged others to as well. (Yay! We raised $2,000 in 2
minutes. If only the whole thing went that quickly.) The whole night
was a huge nechama for me. I love hearing the stories that kids share
with me.
One
of the things that I feel about this project is the love people have
towards Yossi. It is so heartwarming to know that 16 years later,
Yossi still holds a special in many hearts.
Please
visit his Sefer Torah Campaign and please please please DONATE!
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