Briendy Katz

YAY!

Celebrating Chanie’s incredible journey

Briendy Katz

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DEDICATION

The universe is filled with rolling mountains

and lush meadows, spectacular skies and
serene lakes. We have an abundance of
flower fields, deep forests and sandy beaches.
Our skies boast billions of twinkling stars and
a promise of sunset and sunrise every day.
What our world needs is more of Chanie’s
dear volunteers and people like you who have
painted her life’s canvass with beautiful
landscaping and make her world a marvelous
place to live..

Copyright © 2018 Briendy Katz

 Briendy Katz

All rights reserved.

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 YAY!

ISBN:
ISBN-13:
v
 MEET

CHANIE KATZ….

Life deserves full expression!

Diagnosed with a brain tumor at a mere six months of age,

Chanie’s journey has not been an easy one. Whereas her many
challenges may have shunted her growth and limited her abilities to
live a healthy normal life, this courageous young girl lives not in the
shadow of anyone.

She lives in the light of her soul.

She portrays happiness and exudes joy. With her spirited personality,
Chanie will light up any room creating ripple effects of laughter and
love in our world. Her joie de vivre is infectious. Now you can catch it
too!

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YAY!

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 ACKNOWLEDGMENTS

I’m going to thank people here who don’t even know that I’m going
to ask them for help with this booklet and party! At a recent
wedding, I sat with a brilliant Israeli cousin, a licensed marriage
counselor and a therapist. I received a full rundown of my personality
which included the importance for me to make a great impression,
but only in my comfort zone. Not sure about trying to impress
others (I guess reflexology doesn’t lie…) but I definitely have zero
tolerance to work on the same thing more than once. I try to give
my best foot forward and then move on. That can work in the
kitchen but not when you are trying to write a book. Hence thank
you Surie Weber for always being there with the right words, Chaya
Surie Wachs and Malky for their willingness to help with every task,
Esther Englard my author friend, the English major, Miriam
Birenbaum for being the best agent. My family, Eli, Pessie,
Mordechai, YY, Sara and Lele who will probably bear the brunt of
my last minute inspirations that only require us re-fencing the
backyard at the 11th hour, or rearranging furniture in anticipation
that someone may want to use the bathroom on the third floor…
And of course Chanie’s other mothers Deeni Schwartz, Pessie
Herman and Rivky Santag, who without them Chanie would be
wearing PJs in bed watching “Chocolate Factory” over and over
again. These women are the driving force behind her social calendar.
They make sure she is included in every event and give her the much
needed excitement.
 YAY!

Last, I wanted to thank my immediate family, my parents, my sisters,

sister in laws, mother in law, my sister friends Shaindy Weber, The
Weintraubs & Miller families who are always there for me in a pinch.
Truth be told, it takes a village to raise a child, it takes the entire
population of China to manage Chanie Katz. Thank you to all the
unnamed individuals who are there for us every step of the way.
Twenty One Years, it’s MANY days (7,665 to be exact) that would
have been unbearable if not for all of you.

Hashem the Master of the universe, who not only gives us sustenance
but He gave us a special gift, a special Neshama, Chanie, who
brightens our lives. May He give health, wealth, and nachas to all
that we hold near and dear.

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 1 YAY

I’m going to write a book about you. “Yay” She shrieks.

She walks off without giving me an indication if she even has a

vague understanding of what I want to do. As she passes the glass
sliding door you hear banging followed by the all too familiar “yay”
and then as she catches her reflection in the glass, she smothers it
with kisses. The wet marks left join the telltale signs of kisses from
earlier this morning. “Yay” she screams again and continues onto the
dining room. Bang bang onto the glass of the curio. Another shriek
“yay” and again a kiss to her reflection. This one gets a double dose
as she catches her reflection in the mirror. “Yay” pause five seconds
“yay”.

“Chanie please stop saying yay. “Yay” she answers. Now in a bit
more elevated tone, “Chanie stop!” “Yay” she says in a slightly more
modulated voice. “Chanie I’m gonna call Bnos and cancel the

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 YAY!

Shabbaton. You can’t scream yay”. “Yay” she whispers under her
breath. She hobbles down the stairs picks up the acrylic picture frame
“YY I love you. Yay!” She shrieks and bangs the picture of the
adorable smiling YY onto the mirror table.
This is a five minute scene of our daily routine with Chanie. For the
kicks of it last week during our afternoon meal we counted 23 Yays
in the span of five minutes.

Hashem thank you for this adorable child. I’m begging you just
as you watch over her please protect the contents of our home. It’s
one thing having to hear bouts of shrieking “yays” all day. It’s quite
another having to clean up shattered glass. I have to say besides for
one or two broken drinking glasses (we have the cleanup pat down.
No biggie.) Over the course of Shabbos that’s the only residual
damage. Hashem definitely wants us to keep our sanity.

Sometimes as I lie awake early morning and hear her “yays”, mind
you she sleeps 3 yes that’s THREE levels below me and I still hear
her shrieks, I think to myself she is so limited with everything she has
been given in life. No need to list the things she cannot do, but
believe me, it’s a long list. Yet, there she is happily shrieking yay and
kissing her reflection in every mirror. She chooses happiness. She
chooses the Yay instead of focusing on what she is missing. We
ordered a very large gold wooden art that spells “Yay” over her bed. I
told her she can wake up in the morning and look at the wall and
point instead of screaming. She did the pointing along with lots of

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wall banging until the oversized art came crashing down onto her
bed. I think that’s when the banging stopped. She laughed so hard.
She enjoys seeing things fly in the air and land with a loud thud.

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2 YAY! GRADUATION

On June 26th of this year, Chanie is officially aging out of the New
York Board of ED system. The school keeps sending us ad forms to
complete for yearbook along with all kind of paraphernalia we should
be ordering in honor of the big event. I kept shuffling the papers
around my desk and finally stuck them into a corner drawer. Don’t
want to deal with this. At her teacher’s engagement party, I met some
of the moms whose kids were graduating this June. Everyone was
commiserating on the lonely and unknown road ahead. We discussed
the different day hab programs and the consensus was its full gloom.
We all wish our kids weren’t graduating or moving on from the
Board of Ed. When I voiced my opinion about yearbook ads one of
the moms quipped “who wants to celebrate devastation; we are
devastated our kids are leaving school. Nobody is eagerly awaiting to
see our kids moving on in the world since we have great dayhab
programs to pass time. Our kids aren’t exactly getting integrated into
society.” That comment hit home. When I got home I shredded the
ad papers. It was refreshing to speak to the other moms. We hardly
had to exchange words a knowing glance was enough said. We are in
the same boat. Tired. Exhausted. Defeated. Wishing we can paint a
brighter future for our kids. Sruli Langsam Chanie’s “boyfriend” was
at the party. He had graduated last year and has been out of touch for
a while. Chanie couldn’t breathe. She loves him. I keep telling her

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that Sruli won’t marry a girl in pampers. She seems to keep forgetting
that minor detail. We told Sruli that Chanie thinks she is his “girl”. In
all innocence his response was, “when I turn 23 my mother is going
to help me propose.” It definitely went over Chanie’s head but I was
happy to hear that he reciprocated. Years before I had asked Morah
Aidy if Sruli talks about Chanie and she said she thinks it’s all in
Chanie’s head because he never wants to be her partner. I finally felt
redeemed! It’s a two way street. While I was still standing near him,
Miriam, another Down syndrome girl came over and asked when
they would get together. Without missing a beat he told her to come
to his basement to play electronic games and “we will have a date.”
My sham was broken. Yup, Aidy was right. There won’t be any
wedding bells in the near future.

At some point it was time to get our heads out of the sand...
Chanie is graduating and needs to be placed into a program for
Special Needs Adults.

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3 YAY! NO SCHOOL

“School is cancelled today.” Really? Jinx asks. You sure?

“I don’t have school today.”
“The bus driver called, he will be late.”
“The matron broke a leg.”
“I didn’t hear the phone ring.”
Chanie tries again, “it’s vacation this week.” Chanie don’t be silly...
you had vacation last week. Your bus is coming and you still need to
brush your teeth. “I did it already.” “School is over. “
Daily morning ritual with Jinx and Chanie.

All her naysaying and predictions about her school being cancelled is
finally catching up with her. As of mid June she earns the right to say,
“School is over 😉.”

For the last year we have been preparing for this day. Countless
workshops on community integration, transition events, lectures and,
of course, front door training after countless invites. I finally took the
train to downtown Brooklyn and sat through the training. In typical
New York public school fashion, we had to go through security and
long waiting lines to check in. We waited for the printouts. We waited
for the monitor to work. We waited for the instructor to come. We
sat and waited in a Board of Ed stuffy classroom. In uncomfortable

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desks. I had just bought a full warehouse load of old knit sweaters
and T-shirts and had a run in with a customer in Canada who had
wanted a refund because the goods weren’t on trend. He said the
trailer of clothing I sent him were styles from many years ago. I kind
of agreed with him but pointed out that when purchasing sweaters
for $.15 a unit, he shouldn’t be expecting Dolce & Gabbana.
During all this waiting time in the classroom I got to observe the
clothing worn. I went up and down the aisles. It seems the Brooklyn
population of parents with special needs kids wear sensible clothing
or oversized t-shirts. Ribbed light blue tops. Brown tops. Purple
clunky sweaters with old fashioned embroidery on it. The average
person in the room doesn’t update their wardrobe with current styles.
I resolved to start observing my surroundings.

On the lunch break I walked around the neighborhood and

started taking note of the casual attire. Large stripes, small stripes,
plain t-shirts, pimpled tops, sweaters with pockets. Nothing on trend.
The first thing I did was call my customer Sam in Toronto. Told him
to start sending me videos of how the factory workers dress in his
area and compare it to the goods I sent him. It seemed my being a
sleuth didn’t help. He yelled so loud I had to cover my ears. “Sista!
You are taking the blood of my children.” Not sure how that equates
to selling old fashioned t-shirts but in any event I went back inside to
the Frontdoor training.

High strung personalities were all over the place. Apparently,

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someone made a comment over lunch that didn’t sit well with some
of the parents. Lots of tears, lots of screaming. I looked around at the
adults sitting in the kid’s desks and realized everyone here is on their
last straw. They have to juggle so many things without having a
proper community to rely on for support. How lucky I was!!! I, of
course, had to listen to my seatmate’s horror stories about kids
getting lost and being mistreated by cops and how the OMRDD is
worth diddly squat. I feigned interest. Believe me I have enough of
my own issues to deal with. I don’t need to take on hers. I left the 6
hour training nary the smarter but I did get a handwritten certificate
with my name. I have officially mastered the Frontdoor class. As I
walked out the building I passed a wastebasket and threw out the
piece of paper. I continued on my very own merry way. Brooklyn
Marriott was a few steps away so I went into their lobby to use the
facilities.

Fast forward one and half years later and we need to place
Chanie into a dayhab program. The first step is to call Frontdoor
representative and inform them that our child is aging out of the
Board of Ed system and we will be seeking a dayhab program. What
a nightmare. I call, no answer, I call again leave a message. I call yet
again and start punching around other extensions leaving messages
for every staff member. Finally, I get a call back and they ask me for
the date I attended the Frontdoor training. Are you kidding me???
I’m taking vitamin B12 to remember my kids’ names, how would I
know the date and location of a workshop 18 months before?

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I call her school and ask them to check the notes they sent home
with the kids... grasping at straws. Finally, my memory sparks. I
remember passing a Marriott hotel and dealing with the angry
Canadian during the lunch break. I start sifting through invoices and
emails until I find the approximate date. I look up Brooklyn Marriot
hotel on Google maps and try to find the closest Board of Ed school
in the vicinity… At last, after all that sleuthing I pieced it together
and called them back with the date and location. Do other people
actually keep their certificates?? I’m already imagining my messy junk
drawers getting messier... Nah, I think if I would do it again, chances
are I would probably dump the certificate.

The representative tells me that I should please not call the

office again; they have me on the list and someone sometime soon
will call and schedule an interview. I start pleading Chanie’s case.
She is graduating, she can’t be without a program… and then I hear
dead air. Apparently, he hears these sob stories often enough and
doesn’t feel compelled to even stay on the phone to console the
frazzled parents.

We make an appointment to one of the local Day Hab

programs. The purpose of the visit is for them to decide if our
daughter is a good fit, and for us to get acquainted with the facility
and its program.

It’s dead in the winter, even though on the calendar it’s officially

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spring. Chanie wears her bomber jacket and a denim dress and high
top navy patent shoes. On the way out, I grab a cute denim and
silver knit cap with an oversized pom pom. She was just coming off
a fresh cut, compliments of the scissors she found in Bnos on
Shabbos!

We walk into the facility and are greeted by special needs kids. I
think the grass is greener on the other side only for NB – normal
Babies! Don’t think that is applicable for special needs children. We
all think our kids are the cutest and everyone else’s well… they are
special needs. One of the kids literally hung onto me and asked me to
be her counselor. Another kid was picking her nose and I was
disgusted by it. Another kid was just making random noises… I
quickly held onto my Chanie and pulled her into me. Almost to
protect her from this environment. I met my case manager in the
hallway and gave her a look. She asked me what my issue was. I told
her to cancel the meeting…this place wasn’t for Chanie. She
responds, “Why?” I said these kids are just not on her level. She
looks at me and says, “What did you think, you were going to send
Chanie to Harvard?” Of course, I nudged Chanie for her prompted
response to the question “which college are you attending next year”
– “Colummmbia”- she quips. Crystal, Chanie’s special friend who
works with Chanie at our house has graduated from Columbia
University majoring in psychology. Chanie was her companion while
she studied late into the night. Our case manager was a bit taken
aback... but nonetheless made us follow her into the office for our

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meeting.

I am still thinking about the kids in the hallway while the

program coordinator is asking me questions. Is Chanie on par with
her peers, is she aware of hilchos Shabbos & Yom Tov, etc. My mind
drifts… there was one kid in the hallway that was cute and asked
Chanie to take a selfie with her, maybe she will have a friend here…
then she asks me about her diet... and I start explaining her
interesting food habits. I tell her that we try to avoid certain foods
because we don’t want the staff to keep having to change her in the
bathroom. That’s when the coordinator eyebrows arched upwards.
Your daughter isn’t toilet trained? Guilty as charged.

The next question I asked was about security as I noticed the

door wasn’t locked when we came in. She informed us that this place
is not on security lockdown (some fancy government concept
protecting disabled adult’s independence). I didn’t quite get it, as I
explained to her that Chanie can and does easily disappear. She
cannot be trusted for one second with easy access to an exit...

Sitting there it seemed as though the meeting was going from bad
to worse, when Eli suddenly pulls off Chanie’s hat and quietly
whispers to me, “It’s so hot in here why is she still wearing this
hat…” Too late, there is an obvious mark on her exposed scalp- a
mark showing that someone has cut off a chunk of her own hair!
OK! It is now official, as so eloquently said by the group

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administrator, our Chanie may not even belong in this program as

she is not on par with the rest of her peers. And there I was thinking
that my kid can go to Columbia!!

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4 YAY! TEARS

A few weeks ago I had a fitful sleep as whenever I have an early

morning appointment I am tense all night checking the clock, on the
hour. I get to the social security office and take my place in line along
with all the unemployed disabled Americans. As usual a fight ensues
between two, something to do with line cutting. The cursing and
mannerisms are a bit much for my refined ears. I’m reminded of last
week when I stood on this very line with Chanie in tow. She kept the
line going with her sweet smile and adorable quips. “Hello sir. You
got nice boots. Please say excuse me to this young man. Sir you have
a nice chain (to a would- be murderer who had heavy chains coming
out of his pants pocket) I think to myself this rowdy group needs
Chanie as an equalizer.

I sit there for several hours poised and coifed and marveling
how everyone else around me seems to be uptight. Some appear to
be on steroids... As for me, it’s a day in the park. They call my name.
I follow my interviewer to her desk. She starts with the usual, “ID
please... where is your daughter?” How can I explain to her that as
adorable as Chanie is, most people can only tolerate her antics for 10-
30 minutes. I can’t keep her in a waiting room for 4 hours. I simply
answer “she’s in school.” Is she living independently?” Ok, I’m
starting to feel sorry for myself, but I am a big girl. I have long

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accepted that Chanie will never be independent. “Is she married?”

No. We have long dried the tears over that. I’m good. “Does she
have a burial account?” Ding dong. That did it. The girl in the
Escada jacket and crisp shirt who was just complimented by the
interviewer on how smart her sense of style was has suddenly lost it.
Dam broke. A box of tissues shoved in her face she looks up to the
stunned interviewer and says, “I’m sorry. The thought of living
without my daughter someday is too much.” Thereon, every single
question elicited a fresh well of tears. The life of a mom with a special
needs kid. A trip to the social security office is now a trip down
memory lane twisted with tears of dreams dashed. Tears of pity for a
girl who deserves an enjoyable life and spends most of it in bed and
not through her own volition.

On the topic of tears... we moms are an interesting breed. We can

be sitting across neurosurgeons who are delivering gut wrenching
news, yet we keep a straight face. We maintain composure and ask
relevant questions. It seems to the world at large we are strong
characters, we have it all under control. We are our children’s best
advocates, we believe anything is possible, our emunah and bitachon
levels are beyond comparison. We are a bit unrealistic but that is the
nature of the beast. We sometimes think that with a positive
approach we can conquer the world. Yet, we don’t try to analyze
what it is that makes us break down. For each of us it is something
else. I was recently at the bus stop waiting with other moms for our
special neshamas to come back from a Memorial Day trip. The bus

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was an hour late, it was not a pretty sight!! I looked around at the
antsy moms and was thinking we all live on edge, anything that goes
off schedule, or doesn’t fit into our tightly filled day- days filled with
therapists, doctor’s appointments, sleepless nights, special diets etc.
will throw us off on a tangent. The moms were pacing and making
frantic calls, they were getting hot tempered and I was thinking to
myself shouldn’t we get upset that our twenty year old kids can’t put
on the baseball mitt without assistance? We take all that into a
stride, and then we literally go ballistic at the poor driver who was
simply in good old fashioned traffic. We probably all need therapy
for proper coping mechanisms but of course we are last on the totem
pole... we will need to work out our anger management issues by lots
of self talk during the wee hours of the night when there is finally
some peace and quiet in the home.

We were in Israel for Purim and I stayed on to participate in my

good friend Chavie’s (Bella) son’s wedding party. We had a full week
of celebrations. One night we toured Shalva, Israel’s premiere special
needs campus. They serve over 1,000 disabled children and families.
As we walked into the building my friend Chavie translated a poem
on the wall. A beautiful poem about the special neshamas and how
Hashem entrusts them with the best care. That was it for me. Tears
flowed unchecked. At each new stop a fresh set of tears sprung
forward. The wide hallways which gives the children’s minds
breathing space, the sweet inviting scent instead of the usual hospital
antiseptic smell that makes you want to run, the hundreds of runners

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that came to participate in the Shalva marathon from around the

world, the loving counselors laying with the children on the couches
tending to them as though they were their own flesh and blood, the
way Chavie lovingly communicated with the blind boy, the vast
auditoriums, the music rooms… the brightly decorated murals on
each floor.. It’s Disneyland to the special needs community. I kept
having to blink back tears. Looking at the wall of all the sponsors
who made this possible opened another floodgate. Me Kemacha
Yisroel. How fortunate we are to be amongst people who give from
the heart and make a difference in these pure neshamas’ quality of
life.

There was a period in my life that I had to stop attending

weddings. It was during the time when Chanie was either in the
hospital for a prolonged stay or she was just coming home from
there… I would dress up and put on a smile as I glanced back at the
reflection in the mirror on the way out. “Put up a happy face” is the
song that used to play on a loop in my mind. The wedding finery is a
major upgrade to the slinky skirts and hoodies you slumber around in
the hospital, going from the bed, to the family room fridge and right
back to bed... Getting dressed made me feel a part of society again. I
felt alive. I would leave the house optimistic and excited to be able to
participate in another friend’s or relative’s happiest day of their life.

I would arrive at the wedding and forget that I was putting up a

“happy face.” For a moment I was just like everyone else. Here to

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enjoy the evening. Everything would go fine until the moment of

truth, sometimes it happened during the chuppah, other times at
badeken, and yet the moment of truth has hit me during dancing too.
Suddenly I would be gripped by fear! My Chanie will never get
married. I will be a basketcase by Pessie’s wedding – I will not be able
to have complete happiness because I will keep thinking about my
next daughter. And then the tears would come. People would look at
me askance. Ok the kallah is dancing with her mom, it’s a beautiful
moment. If you are a very emotional person you may wipe away a
tear, but to actually cry???? After several weddings, I just gave up and
stayed in my slinky skirt at home. At some point I made peace with
the fact that Chanie won’t get married. Period. For a short time, I
was still trying to see if there was any homeopathic solution that can
reverse the damage to her brain. I contacted doctors across the
world. Quacks. I tried every old wives tale ailments, Tahitian juice
you name it… if there was a new kinesiologist I would look them up.
My poor baby had therapist come to the house that would do all
sorts of incense burning and exercise that would make your hair
stand up. There was an Indian guy Roman that was hard to get, but
we got him... when he walked through the door Chanie would start
shrieking hysterically, she knew what was in store for her… Believe
me, we pursued it all. At that point all I wanted was for Chanie to be
“normal” again. I remember telling someone at the office that even
if my daughter will be like everyone else, she will still have a hard
time with a shidduch because our community puts a stigma on
people for life. Blake Reiser, Econophone’s controller at the time,

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overhead the conversation and pulled me aside. He assured me not

to worry. He told me to focus on my child getting better, and that
when the time comes if Chanie is ready to date, he will make sure she
gets set up with top boys. He even promised me that she can date
his own son, who was two years old at that time. I told you I was
VERY busy with my children’s marriage prospects!

As time went on and I realized she has permanent damage to her

brain. I slowly began making peace with it. Gone were all the
specialist appointments and new ailments and farfetched remedies. I
followed her doctor’s regimen and called it a day. As the years went
by our focus shifted from crisis mode to maintenance, giving her
quality of life, and giving us back our family life. Before I knew it,
weddings were once again a highlight of the week! Chanie won’t
have a wedding, it wasn’t her lot in life, but she has other things to
look forward to. Every day Hashem gives her back her neshama is
another day that she gets to enjoy and bring happiness in other
people’s lives…

The morning after Pessie wedding one of Chanie’s counselors sent

me a beautiful text along with videos of Chanie dancing with Pessie,
and then all four of us- me and my three daughters dancing. I looked
at the video and then rewatched it again and again. People around us
are clapping and my face is shining. I COMPLETELY forgot about
that this had been the moment I had been dreading my entire life.
Hashem takes care of us every step of the way. On the day of

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Pessie’s wedding I saw Chanie as her younger sister. Nothing more.

And so we danced away the night!

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 5 YAY! PARTEE!!

Last week the party planner called me to pencil in a meeting to

finalize the details for Chanie's party. She caught me in one of my
moments. "Party?" I don't know, maybe we won't make one.

Initially, when I ran by some of my grand ideas with Lele, she

made it clear she wouldn’t participate. She thought the party was
ridiculous. “Buy her cool clothing instead, like Hunter boots in all
colors. From the mouths of babes; I didn't even know where to
being responding, instead my brain took me down memory lane. A
few years back the kids wanted Chanie to get Uggs, I hadn’t thought
they offered enough support for her, yet, the rubber sole was thick
and at that point she was wearing out shoes every few days, since her
right foot was dragged behind her. I bought her the Uggs and was
content my girls had been made happy. Last thing I remember
seeing before Chanie fell backwards on a flight of 14 stairs and
marble floors which rendered her unconscious, were her UGGS. It
was Motzai Shabbos. I was in the hallway heading to my bedroom

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when Chanie came bouncing up the stairs. She had been to a

Shabbaton and was in full spirits. She looked up the stairs, while I
looked down the railing, I spotted her boots and thought to myself,
boy they are so clumsy... and suddenly I watched in slow motion as
her entire body made a backflip... I reached over the landing and tried
to grab her hair but to no avail. The kid went down like perfect
acrobat, though there was no trampoline to catch her. The THUD.
I can still hear it ringing in my ears. Eli came running from the other
end of the house and started yelling that there is blood pooling and it
seems to be coming out of her ears. He tried calling out to her but
she was out cold. I ran into my room and locked the door, willing
the kid to wake up. I remember thinking that if this is it, I will never
open the lock of that bedroom door again. I sat there in a frozen
state. Before long I heard Hatzalah try to resuscitate her as they put
her on oxygen. My husband came upstairs to get the insurance card
and realized the door was locked. He quickly opened it and told me
to get moving as we had to get to the hospital. The rest of the night
and extended hospital stay was a blur. I don't recall a blessed thing
besides for this funny incident. At some point she woke up and
pointed to her right hand asking me whom it belonged to... When I
told her it was hers, she asked me to cut it off. It must have been her
way of saying that it hurts. It may have been sprained or fractured....
The two things that stand out in my mind were the UGGS- and my
resolution to buy her smaller sized shoes so that she doesn't lose her
grip and the second thing we determined was that we needed to
move, our house wasn't built for a handicapped child.

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 YAY!

Originally when we sat with the architects poring over the new
house structural plans, the focus was Chanie- can she swing the doors
open, will there be room for her wheelchair, handicapped tubs, safe
stairs etc.. The process took two years and by the time we moved in I
realized the absurdity of it all, the spiral staircase is exactly what the
doctor didn't order. The first few times she went down the stairs I
ran to a corner and said Tehillim since I couldn't bear to watch her
fall again. Every time she went up and down I would again see a
vision of her lying in a pool of blood... I heard her on the stairs and I
would yell to either Joyce or Aidy to assist her. To this day I can
hear Joyce telling Chanie not to go on the stairs alone since Mommy
doesn't like it. Baruch Hashem with time she figured out how to
hold onto the banister and is a pro at coming up and down, though
not without worries. If I am sitting at the table and see her coming I
turn my face to the side and put my hands over my ears. Hopefully,
with time, that too shall pass.

Lele went to Lakewood for Shabbos and Chanie felt responsible

to keep me company every waking minute. As she rests her head on
the propped up pillows (there is a whole science to Shabbos napping
with her, she wants you close to her but not close enough that any
part of your body touches hers-- "move your shoulders Briendy, turn
to this side, no turn a little more, move up the pillow, now take the
new pillow and put it like this.....) she starts listing all the people that
will come to her party. First she starts with the counselors... Camp

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Simcha is her first love. She lists the head staff, past and current, the
campers... then she lists the faculty in her school, our family
members, extended family, all the people she knows from work,
"Nancy from Cato, Sanjay from India, Andrew from China, Mr.
Breier the driver, Lisa and Scott... many of these names have long
faded out of my memory, but not hers. Then she lists my friends,
Raab is always her number one, let's forget for a moment that we
haven't gotten to speak in a while---due to time constraints--- but
still, whenever the phone rings in my house Chanie yells out, Ma---
Raab is on the phone! Goldie with the camera- Goldy took pics 9
years ago but she won't forget that... Chaim Mayer Miller and Zevi of
course, and Sandy, and Tzvi Englard, Mathew Hill the drummer,
Wulliger, Uncle Moishe... Pessie's seminary friends Gila and Rina and
Toba Breindel and Malky Wallerstein, and she asks me if we are
making a special perfume again for her birthday-- no thank you- I
think one debacle with US Customs and Chanel International is
enough.

And so I lie there exactly on the angle she wants me at and think,
how can I NOT make a big deal. My sisters and nieces are on my
back every other day, asking what I am doing in honor of her 21st
Bday-- if she was a boy we would have given a Sefer Torah, and
technically if she was a girl who understood the concept we probably
would have done it too... but it didn't feel apropos... though of late
when I do a chessed, or write out a check for tzedakah, I have in
mind, let this be a thank you to Hashem for giving us 21 years and

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 YAY!

counting of the wonderful adorable Chanie Katz. As she continues

to list more and more guests who will be attending her party, I
resolve to go gown shopping on Sunday.

There was a Val Max dress that I wanted but the store wouldn't let
me take home clothing to try, several other dresses I wanted looked
droopy on her... she is the height of an 8 year old, however the body
and face of a 21 yr old... the right side paralysis doesn't help either...
Buying clothing for her is somewhat challenging even as my first
passion... like the time I shopped all summer and then sent a car a
few minutes before Posh closed Erev Yom Tov to pick up the $450
dress that still needs to be altered. I order from Saks the same Jean
Paul Gautier dress every single year; the one that actually fits Chanie
well! The Zara deliveries that come every few weeks compliments of
Lele Katz usually are either too big or too small and the woman who
does her laundry manages to shrink it, or ruin it after one wear...
maybe Lele's comment about her not having NORMAL clothing
rings true... but not for lack of effort...

Miriam Gruen of Whoopies was extremely sweet. Although the

store was teeming with people, she saw the furtive look in my face
and asked me if I needed help. I held back tears as I told her I
needed something for a birthday party, for a moment she forgot
about Chanie and was a bit baffled that I was coming to a children’s
store to buy a wedding dress for a 21 year old birthday party. She let

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me be for a minute and then showed me a couple of things... told me

to take it home and then bring back whatever doesn't fit. I took the
big red bag but believe me the women waiting for their turn to pay
were all eyeing me since they have a NO return policy, and I wanted
to tell them, that they don't want to be in the situation where they
need to rely on a nice shopkeeper’s apathy...

As I walked out the door I passed by the old Nature's Walk spot.
Again, a flood of memories. Memories of me lugging a heavy 2.5
year old in a weird carriage - she needed the full head support back
then, and pushing my way into the store to ask them if they got the
Elefante shoes in yet... the one that you can remove the insole so that
we can fit them with braces... let alone it was already summer and I
was waiting for this bootie topped with fur... the answer was always
"let me check in the back"...while I waited I would see these adorable
young moms with the cutest 10 month old babies trying on piles and
piles of shoes in all cute adorable patterns... "Not yet, try us back in a
week" was the same reply. I don't know why I didn't call them
instead of making the trek down... What I do know was... this
experience was definitely better than another local shoe store, where
an unknowing salesman asked me why I was bringing my kid to be
fitted for shoes when she can't walk yet, ‘’bring her back when her
gait is steady.’ I scooped up the floppy kid, shoved her into the
carriage and looked the salesman in the eye and said "she may
NEVER walk" and I ran out of the store. I think it took me several
years to come back there...

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 YAY!

Then I passed Latest Headlines...another quick stop down

memory lane... the day the Dr. Souweidane cut open the head
bandages. I needed smelling salts - the huge gash on her head with a
ton of stitches going down the entire right side of her face... The doc
heard my gagging sounds and asked me if I really thought she would
have brain surgery, biopsies, shunts inserted etc. without being cut
open, I told him-- I wasn't thinking - all I know is my kid looks like a
sewn up rag doll. I clearly remember him telling me that it’s a
mindset, and he had a guy graduate with top honors as a neuro
surgeon who himself had a brain tumor as a kid. He said to me, look
at your child as a future brain surgeon. I came home that night,
went to Latest Headlines, naturally five minutes to closing, and began
rummaging through the thick knitted bands. The saleslady was in a
rush to close up shop and she kept asking me what age kid I was
shopping for. She kept insisting that the bands were for grade school
kids and I should focus on the cute little bonnets or tiny bows for
babies. I refused to tell her that my five month old needed several
inches of head covered... and so I selected two $25 band. Now,
remember, this was 20 years ago and it was a pretty penny back then.
I asked her if I can return or exchange if it doesn't fit, to which she
replied in the negative… We have a strict policy. Bring the child in.
Sure, my kid was in the ICU recovering from a 10 hour brain
surgery... tears sprung to my eyes and the elderly saleswoman started
excusing herself... it wasn't her store etc. etc. I kept the headbands,
but I do recall being in a mall with my friend Yocheved and my two

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little kids, I was paying for two cute little sweatshirts, when I needed
to fish out my credit card. Yocheved must have had Pessie with her,
and Chanie started crying that minute. I put her onto the counter and
held her with one hand, while I went onto a little fishing expedition
in my pocketbook. Apparently, when I placed Chanie onto the
counter the wide headband she was wearing shifted and the gash/
blood and stitches were now exposed. Suddenly I hear a shriek from
the woman standing in line behind me... I looked up startled and
followed her gaze. Yup there was my future brain surgeon sitting on
the counter in Shorthill Malls with an ugly deep cut alongside her
head... Oh well... I turned around the woman and apologized and
quickly covered her head again with the dark navy knit 3" headband
from Latest Headlines.

Shopping in Brooklyn brings on memories that make me tear up... in

hindsight as a mature adult today I marvel how naive I was, and how
these minute instances caused me angst, I must have been a basket
case back then. I guess I can say it's all part of growing up. Truth be
told, 23 years of age, is just when we start declaring our
independence... but we are still young and too immature to
understand the enormity of the situation, I must have taken my
emotions and channeled them into the shopping experience.

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 YAY!

6 YAY! BUSINESS!!!

Chanie works in perfumes. She manages all the buyer

relationships, the suppliers, and the vendors. Every day she lets me
know “your driver is outside.” Sanjay from India called. Nancy the
buyer from Cato is very nice. Lisa Meola is NOT A GOY. Danny
from London is a tuna beigel. XXX stole your money. She reminds
me in the oddest times. Like during a Broadway show when its pin
drop silence, you will hear “XXX STOLE YOUR MONEY.” People
around me start fidgeting.

Chanie’s school is notorious for having days off every holiday and
conceived holiday. Who can blame them? Imagine a classroom of
Chanies… I would need two days off after every on day.

So here I was preparing to leave the house to go up to

Schenectady, NY with the Amtrak to visit with Wayne Fitchett from
the grocery chain Price Choppers. As I’m leaving, the girl who was
with Chanie at that time (could have been Salange—oh my gosh do
we have memories of Solange or rather Solangele—the sour faced
strict Haitian women who prayed all day—everyone was privy to her
nasty treatment, that is everyone besides for Chanie whom she
absolutely adored!) tells me that Chanie’s bus never came. A quick
call to her teacher... we find out it is curriculum day. No time to

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think, I take Chanie, her briefcase, her ROCKS – she had a time in
her life where she carried around a heavy bag of rocks. If anyone
tried throwing out a few heavy rocks, she automatically noticed when
she picked up the bag and realized it was lighter... she would throw a
hissy fit until we added additional heavy rocks) I head to Penn
Station and purchase two tickets. Eli looks at me askance, are you
sure??? I tell him no worries, will figure it out … will bond with
Chanie on the train.

Eli said goodbye and we were on our own. I didn’t take a

wheelchair because I had the samples with me and I figured I was
superwoman. Well! I kinda figured wrong. Just getting to the correct
station was a feat in itself, Chanie kept going off in different
directions and as usual I only left myself five minutes to get the track.
I finally picked her up – dead weight and all and ran with her.
Arrived just in the nick of time—it’s moments like these that my
emunah is at its strongest. Only Hashem doesn’t try to “teach me a
lesson--you took your time this morning to put on eyeliner even
though you knew you were short on time... now I will show you…
you will miss your connection...” No such thing, with Hashem, as my
Father, I always get in by the skin of my teeth, with my heart racing I
always look Heavenward and say a special Thank you!

The ride starts off smoothly, our train is quite empty, and another
silent prayer heavenwards. Chanie can be quite disruptive... instead
she looked at the window and spoke to me… Then the fun begins,

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 YAY!

she wants food. She wants blintzes and sprite. We walked through
the trains until we reached the food cart. Her eyes lit up when she
realized you can order food, and sit down at tables. Chanie found
her prey. Went straight to the counter and started chatting up the
sweet cashier, ordering french fries and whatnot. When I realized
what had happened I tried to explain to her that we only eat kosher
etc. I think it was lost on her and she was annoyed that she had to
cancel the order.

We settled on potato chips, pretzels and sprite and sat down to

eat. A Walmart executive came to join us by our table. She told me
that although she has use of the corporate jet she prefers Amtrak
since it’s quicker and doesn’t have to wait for clearance. Chanie of
course interjected every minute and this woman was super polite. So
much so that I took the opportunity to ask my newfound Walmart
friend to babysit Chanie while I use the ladies room. While I locked
the door behind me I was hoping that Chanie doesn’t get up and trip.
At that time she was having a problem with her equilibrium and
constantly falling. Sure enough, when I get out, Chanie is on the
floor and the poor woman is holding a First Aid kit… note to self,
NO bathroom breaks for me anytime soon!

We arrive at our station and disembark. “Mind the gaps,” the

conductor announces. Oh gosh I’m already hyperventilating hoping
that she will make it over the platform. Last minute I pick her up and
carry her off. Lovely… do I feel rain???? These were the days before

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UBER... The corporate headquarters is only a couple minutes walk,

but not exactly going to do that with this girl who can’t seem to keep
herself in an upstanding position for more than a few minutes… I
googled taxis in the area, called a few and the waiting began… We
were drenched… my box of samples ripped… yeah yeah I should
have taken a suitcase but when the warehouse prepared the samples
they thought I was going to ship it in advance… and being in a rush I
didn’t have time to repack.. Rain was coming down harder... we were
soaking… I was afraid Chanie would catch pneumonia, I took off my
jacket and wrapped her in it, and I was in a silk blouse getting
drenched... What I do remember is Chanie’s laughter. The fact that
we were in a deserted area without cover, rain pelting on us my wig
dripping… samples scattered all around must have made for a sorry
funny sight!

When we got to corporate headquarters, I quickly made my way to

the bathroom and opened the hand blowers. Chanie with her
sensory issues made such a ruckus... I didn’t know if I should laugh
or cry. Who cares about business, my poor baby on Chemotherapy
may have her health compromised all because of a sales meeting?? I
took off her clothing hid her in a bathroom stall and started drying
her clothes... I stood under the dryer and tried to dry my wig... I’m
glad no other vendor ventured in at that moment!

The entire half an hour in the waiting room was spent rearranging
the samples into the small suitcase I had and practicing with Chanie

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 YAY!

how she will sit silently during the meeting. I promised her PIZZA
WHEELS and GUSHERS (there was a time that the only nosh in her
vocabulary were pizza wheels and gushers, so help any volunteer who
ventured to bring her another sweet to her hospital bed… she would
turn on the charm and say “you have pizza wheels in your bag? Can
I see the gushers... and then she would kindly give back the other
stuff and say, you can have this...) we practiced the motion of putting
her finger on the lips…

We were ushered into the conference room and Chanie was in her
element. She helped me “pop” the bubble wrap, and set out samples
on the table. I left the cosmetic samples in the suitcase since Wayne
is old school and gets very flustered when you overwhelm him. I
figured I would first cover the fragrances, and move onto the other
category once the samples were packed away.

Wayne walks in and I tell him I bought him a surprise visitor. He

registered a VERY surprised look when he sees my special needs
daughter sitting in the corner with her lips pursed and middle finger
firmly perched in the center. I explained to him my unique situation
and although a bit miffed he seemed to go along with the flow. We
started working on the samples and suddenly Chanie Katz comes
over with cosmetics and tells him, “Wade (practiced him name ten
times but still called him Wade”) you like this one?? He brushed her
off, I gave her a piercing look, she put her finger on her mouth and
put the sample back into the suitcase... A few minutes later she is

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back with another sample, then she takes a few larger cosmetic kits
and tries holding them in one hand. Sure enough, she topples over
the suitcase with the samples mid air… All I told Wayne was... “What
was I thinking???” I apologized and told him I would be back another
time. I don’t think we ever wrote another PO after that.

On the flip side, Chanie’s sweet nature usually captures everyone’s

heart. I’ve had buyers who tell me they hate my guts, but love my
kid, and so when they are in town they always stop by the house to
visit with her.

She has an ironclad memory when it comes to my contacts. She

remembers vendors whom I have long since stopped using, asks me
to call Irene Cosmetics and Andrew from China every so often.
Those factories have long since closed but Chanie will never forget
them.

Whenever there is a moments gap in a conversation, be it at a

doctor’s office, formal setting, Chanie always makes sure to let people
know that she and her mom make perfumes, and then she says “you
wanna see?” as she continues to go through the motion of spraying
perfume in the air.

As I write this I’m thinking this must be so mundane for everyone

else reading it, but to me it’s special. When I think of her I literally
go to a happy place.

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 YAY!

When we sat in Memorial Sloan Kettering day clinic waiting for

the chemo to be administered, she always introduced me to the
others. We met with some big celebrities this way. Jobba
Chamberlain and his dad, one of the owners of the NY Post, a guy
from Liberty Films... She would hobble over to them and say, “Did
you say hi to Briendy” – they would ask “who is Briendy” without
skipping a beat she would respond, Briendy is my mother. She makes
perfumes. Whoever said you can’t build your business rolodex on the
5th Floor in MSKCC?

As I’m writing this another memory comes to mind. Chanie is off

from school and I need to make a quick trip to the showroom in
Williamsburg. I call BM Messenger service, we have an account there
and we are practically family with the owners. Bridget tells me she is
sending a driver right over. I wait outside with Chanie, one, two,
three, five, eight minutes. Chanie doesn’t like to be kept waiting. She
tries to flag down any car that may look like one of our drivers, they
roll down the window as she exclaims, “You’re our driver??” they
give her a queer look and continue into Brooklyn busy traffic. After
a while I go back in with her and call again. The dispatcher tells me
that the driver is around the corner. I run into the bathroom to take
a box of freshwipes for Chanie, while Chanie is standing by the living
room window watching out for the car.

It’s too hot out, so I go outside alone to wait for the car. After

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another few minutes I call Bridget. “What’s going on?” She

promises to call me back within two minutes with an update. Thirty
seconds later my phone rings. “The driver is long on the way to
Williamsburg. He says he picked you up.” Something was off here. I
tell her to call back the driver as I am clearly standing in my front
gate waiting for the car to pull up. She calls me back laughing
hysterically. He has Chanie in the car, he had pulled up to my house,
she was waiting for him at the curb and told him that Mommy isn’t
goint to work today, only me. He asked her where are you going, she
answered to Preferred in Willi. Yes, Chanie works in perfumes
indeed.
.

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 7 YAY! SHABBATON

Keeping strict to my true self, I am not rereading this manuscript

and therefore forgive my repetitiveness, as I type and organize my
thoughts at the same split moment. My 12th grade English teacher,
whom I’m still in contact with, Miss Friedman used to mark my
papers “Too Colloquial” – although I respect her and probably
should have heeded her advice on how to perfect my writing skills,
I’ve certainly maintained that same “colloquial” style. I write as I
talk, I talk as I write, and I don’t really follow my third grade
principal’s advice “think, think before you speak, and when you are
done think again”- so if the contents in these chapters are jumbled
and not that coherent, please excuse me. Another adage worth
mentioning “excuse yourself accuse yourself” this pearl of wisdom is
from my sister Shaindy. Don’t make mention of anything you don’t
want to call attention. Too late for that!

When you poll your average John Doe re whether or not the
American culture is too fast paced, guaranteed the response would be

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that the United States, especially New York is too focused on the rat
race, we need more off days. Corporate America is killing our quality
of life. We all need a break. That is…. the average John Doe; now
ask a mom of a special needs child. For us, America celebrates way
too many holidays. There is always another reason to keep kids
home from school, possible snow days, curriculum days, St Patrick
Days, Winter Break, Spring Break, forget Presidents Day... try
Presidents week etc. etc. We get the grand honor of rearranging our
schedules to accommodate all the “much not needed” breaks into
our hectic lives, we get kids in unstructured environments on sugar
overload for days on end. Here’s where the unbelievable charitable
people and organizations make their debut!

How fortunate we are to be living in New York the home of

Chessed!

ChaifLine is Chanie’s abbreviated version of Chai Life Line. I

think she is just too excited to get that word out of her mouth.
When Chanie was diagnosed twenty years ago with a Juvenile
Pilocytic Astrocytoma, a glioma on the optic nerve we were in no
man’s land. I was a young new mom, Eli was into his first semester in
Touro College, going for accounting, and I was looking forward to
sun kissed summer days, frolicking in kiddie pools with my kids.
Chanie was born a mere 19 months after Pessie, and I had a very
fulltime job running the Accounts Receivable department for a large
telecom company. We had our whole life planned ahead. I would

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cut back on my hours at work, while Eli earned his degree, and
eventually devote myself to being a full-time mom. The first few
weeks on maternity leave were pure bliss! I would dress my two little
dollies, prop the newborn with her gorgeous long lashes into the
back seat, and put little inquisitive Pessie with large brown marbled
eyes in the front and off we would go. We would aimlessly walk the
streets of Boro Park; the streets were deserted as it was early July, hot
and muggy, but I was walking in the clouds. I had lost my weight,
unlike the first time around when it took me months to shed the fifty
– YES, that is 5-0 pounds that I gained with each pregnancy. This
time I shed the weight within the first few days, and there I was, a
tiny little thing with a spring in my step accompanied by my two
diamonds. I remember thinking, life is just perfect- Thank You
Hashem, I was a bit nervous about having the kids so close in age,
especially since at 16 months Pessie wasn’t walking yet… but there I
was on the avenue enjoying my little family.

Reality hit when I realized life was just too good, too easy.
Shouldn’t a newborn exhaust you? This little princess was so serene
and peaceful almost as though she was on display, surreal. My friend
Yehudis Geinsky from Long Beach, was living at the time in New
York and used to bring her baby Miriam, who is exactly one day
younger than Chanie to our house. The babysitter used to complain
that her daughter was impossible, while my kid is a “malach”. Slowly
things began to feel a bit eerie. Chanie never woke up in middle of
the night. Sometimes I would check on her and I’d see she was

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sucking the corner of her blanket; she was hungry but only
whimpered… My mother in law and other cousins also felt that she
was too content. Others felt she was environmentally starved,
because the sitter would keep her in the crib hours on end... So we
took the big leap and called a top neurologist.

Our first visit left us feeling a bit silly. The doctor wanted to
know what antics we wanted our 10 week baby to perform. He
asked us to read Dr Spock’s book. We were instructed to follow her
progress and if at age five months she was not developing properly
we would come back for a consultation.

Needless to say, at five months we were back, especially since we

noticed nystagmus, a condition where the eye makes repetitive
uncontrolled movements. This time the doctor took us quite
seriously. Actually too serious! He made us go straight for an MRI.

I’ve probably written this before, or repeated this many times over
the years on chazak hotline, at Bikkur Cholim or Rayim, Yidei
Chesed speeches, but each time I think about it, I marvel at the
naiveté of the youth!

We took MRIs and several blood tests, the doctor’s secretary calls
me within an hour or two to work and tells me she has results but the
neurologist needs to speak to us in person. The severity of the
situation was totally lost on me. I told the bewildered girl that she

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 YAY!

will need to give me the results over the phone, since I had just
gotten to work. She again, patiently explained that this type of results
needs to be discussed in person. I argued with her and finally when I
realized she wouldn’t let up, called Eli and told him to go into the city
to meet with the doctor. No worries, he wouldn’t go without putting
up a fight. He too called and spoke to the secretary to try to get the
results over the phone. To no avail. So he made the trek to the
office. When he arrived he was ushered into a conference room.
The doctor enters and couldn’t believe his eyes. He asked Eli where
his support network was. He advised Eli to kindly go home, call the
grandparents, Rabbi and wife and then come back to hear the results
first thing in the morning. We were young kids, having planned our
life ahead, and were certain that Chanie would get a pair of corrective
glasses and possibly an antibiotic that would make her more alert.
After all, when we played with her she would smile, she did respond
to music, loud noises etc. We didn’t really see what the fuss was all
about.

The next morning bright and early we headed to the city with an
entourage. This time we were greeted with a team of doctors. The
neurologist showed us her scan and explained that the tumor
although it was generally a slow growing cancer was now the size of a
grapefruit and is wrapped around the optic nerve. It was inoperable
due to the location. We would need to treat her with a concoction of
different chemotherapies. For a full hour he detailed the procedures
she will undergo including biopsy, shunts and mediport. All these

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new terms, I just wanted to ask one question. On our way out I
asked the doctor quietly if this “thing” is hereditary, will her children
have it. You know a Jewish mom is always worrying about her
babies’ marriage prospects! The doctor turned red in his face and
yelled at me, “You are worrying about her kids?? I am worried she
may not make it through tomorrow!”

That night I went into the shower and cried it out. As the hot
water rushed out of the rainhead above, tears streamed down my
face. I cried for the dashed dreams. I cried for the beautiful baby girl
who will forever be marked with cancer, especially since we were told
that this isn’t a cancer that goes away. It’s treated as a chronic
disease, they try to keep it at bay and give her a quality of life. Doing
any aggressive surgery or radiation will impact all her abilities, since
the optic nerve controls the entire body. I cried and cried until the
water got cold and there were no more tears left to cry.

And then we met Raizel Goldberger from Chai Lifeline. Bright

and early in Memorial Sloan Kettering, she was there, like a mother
hen, fretting on us and guiding us through the dark hospital
corridors. 20 years ago the children’s day hospital consisted of a tiny
playroom, a dingy waiting area and a food cart in the corner. Raizel
and Esther Schwartz took us under their wings. They insisted we
attend the upcoming Shabbaton. Our baby was five months old, had
a large gash in her head, was neutropenic all the time and yet they
persisted. All Shabbos the staff and volunteers played with our two

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 YAY!

kids while we got to speak to other parents. I was the youngest mom
in the room, surrounded by very mature 35- 45 year olds. We were
asked to share our stories and as they went around the circle and my
turn was approaching I started panicking. These women were all
talking about their spiritual experiences, and how they feel more
connected to Hashem, while I just wanted to go back to Hi Baby and
buy imported Italian clothing for my two kids- spend my full
paycheck on Baby Magil. I can always become lofty and give up
materialism at 35, or even at 30, but now??? I just had my second
baby. I didn’t get to fully enjoy Pessie as a baby since when she was
nine months old I began vomiting and had to be on bed rest with the
next pregnancy, during which I fainted and vomited most of the nine
months… I wanted to scream. I wanted to cry. I wanted to tell the
group “life isn’t fair, I want to act my age. I don’t want to have to
learn the ropes of having a sick child...” but of course when it was my
turn to speak, I relayed the dry facts of how Chanie was diagnosed. I
let everyone know that I was new to this journey and I hope that one
day I can speak with the same positivity that they talk to.” Well here
we are twenty years later and I can say unequivocally having Chanie
has changed my life for the better.

The other night I took Chanie to her teacher’s wedding. This was
a very big day for Bi-Y V80. The kids have been preparing for the
wedding since the day Morah Aidy announced her engagement. The
boys and girls were dancing with all their might, they were trailing the
kallah wherever she went. Watching the kallah navigate the crowd,

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never once showing even a slight annoyance to the girl who kept
fanning her with a white napkin all night, or the boy who thought he
was actually her chosson, to the girls who felt they were her
bridesmaids which meant they got to hold her hand by every dance…
I watched these special neshamas and realized that the room is only
filled with special neshamas-the students who through no fault of
their own don’t have proper pragmatics or wedding etiquette, as well
as the teachers and staff who are devoted and wedding guests who
were not only not perturbed by the scene, but took pride in every
antic and dance move. When Aidy danced with her Chosson, the
wedding guests crowded around the circle. Of course there was my
Chanie, short petite little girl pretending to be an onlooker as well. I
stood behind her to make sure she doesn’t inadvertently fall, should
she get a slight push... it takes nothing to knock this little kid over.
I’m watching her face, and thinking to myself, ‘this poor kid is staring
straight at someone’s back. She is not taking in the beautiful scene of
the Chosson Kallah, yet, is smiling because the music is making her
happy.’

I see her tiptoe. And then slightly tap the person in front of her
so that they would move to the side and allow her to peek through. I
don’t know why, but suddenly I heard a bird singing! A butterfly
flutter. Hashem gives us the innate tools to fend for ourselves even
without us realizing it. This is what it means to have a child with
special needs, you get to see the tiny little tiptoes and marvel at
anatomy of the brain, all of this orchestrated by our Father in

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Heaven.

Camp Simcha is the highlight of Chanie’s year. Throughout the

year, whenever there is a coach bus in sight, you can hear Chanie
yelling “hold the bus! I’m bringing my suitcase!” For years she used
to throw a hissy fit when we tried to unpack her stuff upon her
return from camp. Oftentimes, one of us would bring up a suitcase
from the basement before travelling, only to find it stuffed with
clothing – (oh here’s the Kate Spade pink sweater we were missing!!)
pillow cases and toiletries. Although it is only ten days at the end of
the summer, each 24 hours is chockful of fun and memories to last
through the year. Part of Chanie’s after school routine is to watch
the Camp Simcha video. As each girl gets off the bus she yells their
name, and when people act goofy she giggles anew as if she is
experiencing it live. Every year I feel guilty sending Chanie to camp.
She has been going since she is four years old! I keep telling Raizel to
let someone else take her slot, but Raizel won’t hear it. She always
says, “Camp Simcha is Chanie, and Chanie is Camp Simcha”- I can’t
argue that!

During the early years of Chanie’s illness we were introduced to

Frumie Horowitz. A woman of valor, a woman who gives hope and
dreams to all who are fortunate enough to know her. She would stop
by our hospital room and whip out of her bag filled with specialty
foods and “prizes”—Chanie was and still is a sucker for prizes. She
keeps inventory of all the junk she amasses. She’s like a mother of a

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large family. With each new addition, her heart grows bigger, she
loves them all. Chanie’s love for prizes never wanes, and so help me
if I try to reorganize her collection of Coach bags and wristlets…
each prize is like another child to her. Ok, maybe it’s a bad analogy
but you get the drift of it. And there was Frumie. Every few days she
would stop by with a new electronic, toy, stuffed, craft etc. and then
she would whip out her phone and start calling singers to come cheer
up Chanie. Within a few years her efforts kept multiplying until it
blossomed into a beautiful organization Bein Ish. She has a
wonderful group of volunteers that are there to cater to every whim.
Years ago, when we were heading to Florida for a much needed
respite and then were quarantined by the Department of Health,
Frumie went to work and within hours she arranged for a beautiful
respite at Oceanplace Resort. Best of all was Chanie’s box of nosh.
We couldn’t leave our room and so Chanie sat on the porch with the
egg sized grocery box, and packed and unpacked, made “pekelach”
and entertained herself for hours… all compliments of Frumie.

When we meet a familiar face in the street and they ask Chanie,
“Do you know who I am?” If she doesn’t immediately recognize
them she says “yes... you are from Bein Ish!” That’s because at
Frumie’s parties there are always so many different volunteers and
people who are in the need of a pick me up. Although we have
stopped attending the Shabbatons, Chanie will not give up the
Chanukah and Purim parties. Miriam Greenfield with her trusty
reminders!! Chanie looks forward to the parties and best of all

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meeting Frumie and co all year!

One year before Rosh Hashanah, Bein Ish sent Chanie a machzor
with the organization logo imprinted on the back. Chanie cannot
read “yet”- who knows someday, to quote my mother, “she may
surprise us all!” I’ll drink to that! I’m already imagining myself an
old and feeble woman in my 90’s and my Chanie sitting on a rocking
chair reading to me… Every year as we go to shul and take our
machzorim, Chanie comes over and starts looking up and down the
machzorim if she sees the Bein Ish logo on the back, she yells, “Hey!
That’s my machzor from Frumie Horowitz”. It really made her feel
special and to this day, she insists that nobody uses it. She sits on the
couch or sometimes for a minute in shul and holds her precious
machzor!

Enter Mekimi, an organization dedicated to both children and

adults stricken with cancer. During the years that we called MSKCC
our first home, we couldn’t have done without Mekimi. They were
there for the other children, every Sunday was a funday, big sisters
and special shabbatons just for the girls. The evening trips for the
moms and the exercise classes had us all in stitches. We were a group
of women releasing our pent up emotions with zumba. What fun!

Recently while on vacation, I spent a glorious morning doing laps

in the pool, surrounded by coconut trees whilst soft music is

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playing out of hidden sound speakers in the grass. Bright rays of

sunshine reflecting everywhere , up above white cotton candy clouds
against the backdrop of a hazel blue sky. As I serenely languish in
the water reading a book on the ledge, then taking a dip when the
suntan lotion starts forming droplets and beads of sweat run down
my face .

I immerse my body into the water feeling the coolness against my

heated skin.

I start doing my backstrokes. Suddenly memories of teaching

pessie to swim overtake me. I can still hear her shrieks of excitement
as she yells to me “ma, look I’m doing it myself!” as her tiny body
splashes in the water .. I jump in and show her again. “Pretend you’re
on a bed, just relax, think of it as if you are going to sleep in the
water. Let the water just become one with you. Don’t fight it.” At
first she huffs and says “that’s exaccttly what I was doing “ and then
she scrunches up her face in determination and goes for take two.
Eventually she gets it. And My squeal matches hers when her little
head emerges from the water .. I did it !!! Yes dear, indeed ...fait
accompli !

My mind wanders to Lele. Same story different pool. Though this

time we had Pessie as a cheerleader. The pure joy on Lele’s face when
she tried swimming on her back the first time and didn’t kerplunk
right in.

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Naturally these happy memories are marred. What about Chanie?

Where is she in these blissful memories?

What about Chanie? So is the life of a mom of a special needs kid.

We are robbed from these tiny happy memories. Forget teaching her
how to swim. Taking her into the water with a pamper ;(before the
days of swimmies) created a very very heavy kid that needed a
minimum of four hands to maneuver. She had no natural instincts to
move her face when a big splash headed our way. Another
enthusiastic swimmer innocently enjoying their bellyflops into the
water would create these mega splashes and while we would quickly
avert or close our mouths, Chanies would swallow water causing me
to hyperventilate. “Omg she’s choking” I would scream. Or
suddenly without any prior warning her head would inexplicably be in
the water while pessie lele and I are holding her limbs tight. I would
envision her drowning. I would grab her , start banging her back yell
at pessie or lele or both of them and the whole swimming episode
would be a disaster.

Those days are gone now , replaced with a happy child who
actually insists on shopping for pool bags and bathing suits but
doesn’t really relish a pools. Now it’s me looking for public pools
that have handicapped equipped lifts as the aqua therapy does
wonders for her. It’s still a big deal, exhausting and probably happens
once a summer, if that, but it’s in line with my expectations. It’s

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therapy. We don’t gear ourselves up thinking we are headed for a fun

relaxing swim.

The other day when I was shopping for Chanies birthday similar
thoughts unraveled. She’s 22 and I’m filling party bags with water
balloons and paints fit for my grandkids. These are roads we
Mother’s of special needs kids hate traveling, we try to just check it
off our “to do list” chanie school bday party check ... but every so
often, when we stop to think we are saddened by the reality of life.

Thank goodness we get to balance out these sad moments with

the many many happy ones especially the pics we get from her Camp
Simcha counselors.

Camp Simcha is a special needs mother’s dream. We can finally

give our children a camp experience unparalleled in the world.
Happy warm Memories that will last them through the various
painful therapies they have to endure throughout the year. We the
moms get to relax and rejuvenate while we know our kids are in the
best hands !

To a bystander it may seem like there is repetitiveness in the

various organizations catering to the same families, however as
someone who has lived through this day by day, I can attest that each
one is unique and helps alleviate the burden in its own special way.
The Shabbasim we have spent with families in similar situations have

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been an invaluable gift. We have each learnt coping mechanisms,

some tricks of the trade. I guess with Amazon it’s different; everyone
keeps their successes to themselves afraid to share their little known
keys to success. However, thank goodness that privacy is kept only in
business. There is so much we can learn from each other. In our
world its not every man for himself, its together we are better!
When Devoiry from Project Menucha arranges a dinner for moms at
The Loft, we drop everything and run. As our kids are growing up
we have new challenges. We may no longer need the hoopla of a
Shabbaton, or the grand parties but moral and emotional support we
can never get enough of.

I’m taking a moment to thank Hashem for sending such selfless

people into our world. People with large families, who run busy lives
but still take shifts at dispatching for chessed – people who spend
their days visiting the sick in the hospital – we used to look forward
to every Monday since Raizel Tabak and Miriam Basch—saved in my
contacts as Miriam Tabak—the two of them were like Bobsie Twins-
they came and went together for year we always enjoyed their
company, Tuesdays was Esther Schwartz’ sister Bella Klein- her
classy demeanor was something to marvel at. Wednesday was Robert
from five towns…. And Leah Kurzer at the wheel… with the
brightest smile early in the morning waiting for us… always there to
help in every which way… The people we have met with over the
years have become a part of who we are. Many thanks to these
wonderful organizations for recruiting the best volunteers.

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 8 YAY! WHAT’S YOUR NAME?

Sitting in Mr. Broadway with two former IDT executives

discussing a business venture, one of the guys starts describing
Disney’s incredible infrastructure, and how the service and deliveries
work. He turns to me and says, “You should never have to utilize the
backend. I have access since I’m involved with an organization that
brings children stricken with cancer to Disney.” I nodded, and told
him that unfortunately I am a little too familiar, as several years back
my daughter had the privilege to go with Ohr Mayer to Disney. She
has gone many times since, but that trip was special. Suddenly the
guy exclaims, “You’re the mom of Chanie Katz ‘What’s your name’
Chanie Katz?” I laughed, he got my daughter on the money! He then
went on to tell me that Chanie calls him all the time and his daughter
Sarah was in Camp Simcha and is in love with Chanie.

Yes, “What’s your name?” has become Chanie’s trademark. Last

year, Erev Shavuous Lele and I were waiting our turn to have Linda
our favorite manicurist do her magic. The tiny little salon was
crowded. Every time the door opened we all had to inch closer to

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each other to accommodate yet another person on the long bench.

The doorbell chimes and in walks Chanie with Susan. “Oh no,” I
thought to myself. People’s tempers are short, its Erev Yom Tov,
hot and sticky, we can do without a dosage of Chanie Katz. She had
no idea I was there, and didn’t spot me until later. She walks in and
noticed that several people were standing, one person had a cane.
She turns to a woman seated on a chair and asks “What’s your
name?” Then turns to the woman with the cane and asks her the
same. “Meet Sara, she’s a nice lady with a booboo on her foot. Let
me hear you say ‘hello Sara’ now let Sara sit” And this is how the
dreadful hour passed. Chanie was introducing one person to
another, and asking them to talk to each other. I sat there perched
on the bench and marveled how a young handicapped child can turn
a very busy salon into a nice social gathering!

During a family vacation to Virginia we took the kids to Water

Country. Everyone’s spirits were high, nothing like hanging out with
water slides on a beautiful summer day. Amusement parks have
always been our thing, especially with the fastpass, and handicap pass
we always managed to get onto the rides as many times as the kids
wanted to have their stomachs turned inside out. We know the drill,
you skip the lines, go to the exit and follow the handicap signs, until
you get to the ride attendant who immediately whisks you onto the
ride. There was a time that the Mendelsohn family only wanted

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Chanie Katz to come along with them. They had fond memories of
Sesame Place, where they got the VIP handicap treatment. And so
we were looking forward to a fabulous day at the park. Lugging our
wheelchair, towels, and the rest of our knickknacks we head to the
first slide. When I asked for the handicapped entrance they informed
me that there was none. Undeterred, I parked the wheelchair and
asked Pessie to help me walk with Chanie... Whereas others ran the
short distance to the stairway, we were taking baby steps, as Chanie
wasn’t too happy walking in Crocs, they kept falling off her feet or
getting stuck in the mud. Finally we get to the stairs, one step, two
step, three step, at 60 steps we were done counting... I looked up and
tried to figure out if it would be easier to push my way back down, or
if I should continue this steady climb. Both girls encouraged me to
continue the climb up. Then we met up with others waiting on line,
anyone with acrophobia and claustrophobia would have a field day.
You are ten floors above ground level and there are thirty to forty
people crowded into a small space. I quietly asked Hashem to help
me get through it, and promised that if we make it out of here in one
piece I won’t risk fate and I will patiently wait with Chanie in the kids
wading pool.
Chanie being Chanie began chatting up our fellow water park
mates. Aside from the Katzs, the others on line came dressed the
way one would normally dress in a water park. Well, Chanie
wouldn’t have it!! First she made sure to get everyone’s name and
then she got heimish. “Hey! Where’s your shirt?” To a guy who had
very visible tattoos, “Why do you color your arm?” “What happened

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to your other bathing suit, this one is too small.” “I love your
sunglasses did your husband buy it for your?” She even made some
of the men offer their caps to the women in line. “Give her your hat,
she’s hot!” In no time, she had the whole line swapping sunglasses,
and talking to each other. When we finally reached our turn some of
the people asked me which ride I was headed to next since they
wanted another round of Chanie! I was more than happy to go
skedaddling down that slide and then head to the wading pool. Lele
was still a little kid and she was unforgiving; we come all this way and
then all you do is klutz with Chanie. She insisted that we do some
water park haysack races. We made up to meet a little later, as
Chanie needed a diaper change and a “SPPRRITTE” – there were so
many bees buzzing around, and you can’t reason with Chanie. I kept
telling her that she needs to dump the soda since the sugary liquid
attracts the bees. She wouldn’t have it. I was a sorry site, when I
heard the buzzing of a bee I jumped and tried to take her with me,
the oversized jumbo soda would spill, we would get attacked by an
army of bees, but that girl wouldn’t give up on her SPPRRIIITE. I
finally dumped it with a promise to buy her a closed bottle from the
machine. “I’m so THIRSTY... I didn’t have ANYTHING today. I
need a Sprite. (I love when she mimics others, it’s too cute!). I went
to the other end of the park and bought her another Sprite hoping
that the bees didn’t travel that far. No worries, while I was paying for
the Sprite, Chanie walked off. I had bigger problems to worry about
than a bee sting. I ran around looking for Chanie and wandered into
the nitro racer area. There I found her speaking to the ride

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attendants. What a relief! Those few moments (if you are lucky it’s
only moments… we have had acts of disappearances that lasted
hours) when you are not sure of the whereabouts of your child, are
deadly. You are gripped with fear, to the point where you can’t think
straight. Where would she have gone, what did she say moments
before... Suddenly your brain is a black fog. You can’t remember
anything and you start running like a madman in every direction.
When I spotted Chanie I ran to her and hugged her. No point in
admonishing a child who has no understanding of what they did
wrong and will most certainly do it again. I decided to spend the rest
of my time in the shade just talking to Chanie and feeding her
licorice. I was spent!! When it was finally time to leave, I said
goodbye water parks—for good!

Or so I thought! Years later we went to Busch Garden and

visited the same water park, this time we were with the Englards.
Chanie was older and more mature and so was I. From the get-go I
told the girls that I was not attempting any crazy stuff, I took Chanie
on walks around the park, and together with my friend we took her
into the simulated wave pool. She loved it!! She relaxed on the
beach chair and conversed with the people around her, while my
friend Esti and I were on nearby lounge chairs enjoying the sun.

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9 YAY! ZAIDY

Chanie connects well with the older generation. She finds little
kids a bit trite, kids her age usually don’t appreciate her, 30-40 yr
oldsare busy with their hectic life, but the older generation has time
and patience to respond to her many “And then, and then…”. She
always had a special relationship with both her grandfathers. During
the years that Chanie was on chemotherapy she always sported
interesting hats. Today I’m a bit more practical but back then I still
wanted her to look like any other child. I would track down the
Jacardi sailor caps from France to match the little outfits, the Schteiff
caps so that the teddy bear on the dress went with the hat, the little
straw hats, the fedoras, my poor Pessie had to wear the same hats in
the heat because I didn’t want Chanie to stand out. My father would
walk into the house ask Chanie to exchange hats with him. He would
put the small little hat onto his head, and put his shtreimel or large
felt hat on hers and would make all kind of silly faces. She loved it!
She got so used to it, then when she would hear him coming she

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would immediately take her hat off in preparation for the exchange.
There was a point that her buzzword was “Baruch Hashem”. He
used to call out to her, “Where is Mrs. Baruch Hashem?” She would
giggle and repeat, “Baruch Hashem, Baruch Hashem.” To this day
she loves going over to my parents home to shmooze with both my
mother and my father. She gets to practice her Yiddish there. She
also gets my parents to MOVE AROUND. She calls out to my
mother, “Bobby, come into the dining room, Zaidy is calling you.”
My mother comes running. Then she walks my mother back to the
kitchen and calls out to my father “Zaidy, Bobby needs you in the
kitchen,” and my father gets up to see why he is needed. And this is
how she spends an hour or so having them shuffle to and fro.

Her Zaidy Katz A’H was a giant of a person. He was able to

connect with every human being at their level. He had a heart of
gold, big enough to takeon the worlds problems. Everyone knew,
when in a bind just call Zaidy Katz. To every problem he had a
solution. He was our family’s one man band cheering squad. Before
he was niftar, when we would call him late at night, after a long day
in the hospital, to ask if we can pop in, he would answer with sheer
gusto “SURE! WHAT IS THE QUESTION! Always ready for a
guest.” We would arrive to find him weak on the couch, but with the
biggest smile and always very welcoming. Chanie loved to going to
“willitown” to visit with her grandparents. The highlight was
sleeping in her grandparents bedroom. They would take her in after
the meal and entertain her at the crack of dawn when she usually

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awakened. From the many hospital shifts both her Bobby & Zaidy
took, to the special little outings to the ice cream parlor, to the
beautiful clothing Bobby Katz bought at every occasion, they hold a
special place in her heart.

She absolutely adored her Zaidy. He always had a stash of

gushers for her. She would come over to give him a hug and he
would magically whip out gushers from thin air. When Chanie was
younger she used to scratch and hurt the younger kids. They would
be afraid to play with her. Early Shabbos morning you would find
Zaidy Katz sitting on the couch with her, reading her a story and
feeding her chocolate leben while the other kids played in the
backyard.

During the end of Zaidy Katz’s life we didn’t bring Chanie to the
hospital. We didn’t want her to know how far his health had
declined. We wanted her to remember him as a vibrant jolly man
who loved to spoil her with gifts from “dee job!” (He worked on 47th
Street and never failed to bring home interesting toys and books for
his grandchildren.) The day he passed away Eli & I came home
from the hospital to quickly get ready to go the levaya. We only had
a few mintues to change and so we didn’t pay any attention to
Chanie. She had just come home from school and went to the room
with her aide. Suddenly we heard crying from her bedroom. We
found her on her bed with tears rolling down her cheeks, “I want my
Zaidy. I need Zaidy now! I want my Zaidy.” To this day we don’t

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know how she figured it out, possibly she heard Lele crying, but she
realized the severity of the situation and was inconsolable. We
literally had the car wait outside while we tried to calm her down, but
to no avail. Her wailing didn’t stop. She wanted her Zaidy, and so
did we!!!

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10 YAY! SISTERS

Pessie was all of two years old when Chanie was diagnosed and
our life was turned upside down. The word brain tumor and
chemotherapy became a part of her daily vernacular. She was a
regular at the hospital playroom as it was easier for us to pop her into
the car early in the morning and take her along than to make
complicated babysitting arrangements. With time, she was well
versed with both the complicated medial terms and the procedures.
White Counts, CBC, Blood Pressure (she used to call it Blue
Pressure- since the cuff was blue), Finger stick, Platelets, transfusions,
seizures, Ativan. This tiny little peewee went from a toddler to a little
mother hen at lightning speed. When Chanie would cry, "I hate my
chemo!" you would hear little three year old Pessie with her squeaky
voice cheering her on and telling her, "Chana Bannanah… If you
don't pull out the chemo line, do you know what you will get? You
will get prizes from the treasure box". Both the doctors and nurses
enjoyed kidding around with her, she would regale them with classic
Chanie stories... "Yesterday, while my mother was sleeping I heard a
beeping sound, I followed the sound until I found Chanie. She was
eating her hearing aids and they were beeping inside her mouth. This
little Chanie is a big troublemaker." They would humor her and tell
her she is Chanie's second mom and she would square her shoulders
and stand taller. She took her job very seriously.

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When she was four years old I got a call from school that they will
be giving her play therapy. Immediately I switched into defensive
mode. The woman who called me used to be my teacher and I wasn’t
very fond her back then, she definitely wasn’t scoring points with me
now. I told her no thank you. My kid doesn’t need play therapy. She
began reasoning with me. Your kid asks the other kindergarten kids
to play hospital and calls a doll carriage a wheelchair. She talks to the
teachers instead of playing with her classmates. She is really effected
by the trauma. She drew a picture of your family and she made a
dark grey cloud overhead. I thought I would strangle the teacher. She
continued. And I hear she summers with great grandparents and is
sent every day to a great aunt. Now I was livid. Apparently there was
play therapy alright. They must have begun sessions without my
consent. I told the woman on the phone that my daughter is a bright
4 year old who can handle herself and hold her own. That she has an
overactive imagination. As we spend time in the hospital the last two
summers I sent her to Pocono Mountains with my parents and after
school she goes to an aunt who is a dear and loving person. The fact
that she likes to join adult conversation is indicative of her
personality not of her situation. I told them in no uncertain terms can
my daughter receive any therapy and no social workers can talk to her
without my written consent.

Later that night when I regained my composure, I realized that

the woman was correct. Pessie did spend summers with her great
grandmother! My fathers mother “Bobby Knobloch” was already a

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feeble woman and couldn’t be left alone in the city. Every Summer
my parents would pack her up, along with the wheelchair parapanelia
and drive up to the pocono mountains. Apparently Pessie and
Bobby Knobloch hit it off, and they spent time entertaining each
other. Bobby Knobloch loved to recount Pessie’s brilliant mind.
She asked four year old Pessie why she doesn’t go play in the
sandbox or playground with the little kids, to which she responded
“the older people understand me better” and then it hit me. It was
my aunt that was babysitting her, which rendered her Pessies great
aunt!! She indeed did spend the summers with her great grandmother!
The school was right. I was surrounding our little girl with mature
adults and subjecting her to trauma by taking her to the hospital with
us.

I put my tail between my feet and called the school. “Yes. Please
give her play therapy”. In those early years, whenever Pessie got a
tiny cut on her hand she would make a scene and we had to apply
creams and band aids and call the neighbor Moishe Kolodny who
was a hatzallah member. If we said,” it’s nothing it’s a mosquito bite
let’s just put an ice cube onto it “she would get all insulted and let us
know that we only care about Chanie. When Chanie bleeds we rush
her to the hospital. It got so out of hand that we went to speak to Dr.
Pelkowitz. He told us to keep calling Hatzallah. He said the
emotional self-worth of a four year old is just as important as her
physical. She feels the need to vie for your attention by feigning
sickness, give in to her charade. She will feel victorious. As she

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matures she will outgrow it.

With time Pessie would become a true sister’s keeper for Chanie.
If I’d go to the grocery with Chanie she would ask to come along and
I quote, “I need to make sure this kid doesn’t try to steal some nosh
while you shop.” And she would stand duty in front of the store and
entertain Chanie while I would be dashing around the store gathering
ingredients for a last minute dinner. My 5 year old mother hen.
Whenever Chanie was hospitalized Pessie would arrange for her
class, oftentimes even the entire school to say Tehillim and send
home get well cards. Shabbos afternoon she would invite her friends
over and introduce Chanie to them. It got to a point where I had to
stop these parties. Every week there was another group of girls that
would come and drive Chanie bananas, “Chanie let me hear you say
“Sheva Schwartz” and Chanie would say “Shower Schwartz” and the
kids would giggle again and again. Chanie didn’t'’ get tired of being
the center of attention, but Eli & I weren’t ready to give up on our
Shabbos afternoon naps.

At a mere age of 12 Pessie became a Bnos leader for special Ed

children, she would constantly invite autistic children for the
weekend. She truly had a special feel for the children, and devoted a
chunk of her free time to them. Every year after Camp Kayli, the
special needs camp she volunteered at, Pessie would sit for hours
preparing albums for her campers, and as I watched her creativity
come alive, I couldn’t help but marvel how having Chanie as a sister
has helped mold her to become an intuitive sensitive kind and patient

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soul.

Lele, is and always was the baby of our family. When she was
born Chanie was in MSKCC for a prolonged stay. I was there with
her the night I went into labor, and went straight from one hospital
to another. We left Chanie with a young volunteer for the night, let’s
just say this, the ride to Methodist Hospital was pretty tense for more
than one reason. As soon as Lele was born I sent Eli back to
Manhattan to be with Chanie. I think I had borderline post partem
depression. I was elated with my new bundle of joy, my adorable
baby girl, however I was antsy and wanted to leave the hospital. I
didn’t want visitors since I was a bundle of nerves and wasn’t up to
feigning interest. I was nervous for Chanie, hoping that she was okay
and won’t be neglected, it suddenly hit me that I am now going to be
the mother of a newborn child that requires a lot of attention, in
addition to caring for a sick child. Before the baby was born I was
imagining myself on a glider, rocking the baby. In anticipation for
the big day, I prepared a beautiful cradle with lace linen and pillows.
I ordered from England a unisex “bringing home the baby from the
hospital” kit which included adorable layette. In reality, when it was
time to take the baby home from the hospital I just wanted out. I put
the bunting over the hospital undershirt and demanded the discharge
papers. The beautiful English package was a thorn in my eyes, I
shoved it into my hospital bag, zipped it up in a flash and strode
down the corridors to the elevators. Suddenly we hear an alarm
ringing, the nurses came running and scolded me for not waiting for

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them to officially escort me out of the building. I was so

discombobulated that I gave them attitude. I signed the papers, I
said, and this is a hospital not a jail and on and on I went. When I
arrived home and saw the nursery I prepared for the baby I once
again felt repulsed. Instead of enjoying the moment and putting my
gorgeous newborn to sleep in her new bassinet and lavender fully
furnished nursery, I took an old porter crib into my room and placed
the baby in there. I then sat down and cried. I cried because I felt
overwhelmed. I cried because I didn’t know what Chanie’s
predicament at the hospital was. I cried for the future of this little
baby who will grow up with parents who spend more time at the
hospital than in their own homes. And as time is a healer, this too
passed. I had a good shower and a good night’s sleep, I awoke in the
morning alive and well and couldn’t wait to start the day. I took a
look at the baby sleeping peacefully besides me and my heart melted.
A pleasant thought came to mind. My sister in law Faigy once
mentioned that people who are afraid that having a large family will
impact their quality of life negatively are not aware that with each
neshama born into this world, a new set of brachas come into the
house. I looked at my child and saw siman bracha. I said to myself,
this child will demand our attention and so Hashem will have to
make Chanie’s condition better. At the time we literally were
spending 5 out of 7 days in the hospital for four years going strong.

Chanie was discharged a week or so later. Our friends, Yocheved

and Shuey Kohn had graciously offered to watch her for two weeks

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while we recuperated at home with the newborn. When it was time

to bring her home, Eli bought in a sleeping Chanie into the house
and put her onto the leather couch in the dinette. I covered her with
an afghan and tiptoed upstairs. Happy thoughts accompanied me as
I walked up the stairs, two at a time. My child is home from the
hospital, shes sleeping soundly downstairs, my newborn is swaddled
in her beautiful little bassinet and I’m ontop of the world. With a
smug smile on my face, I went to take a shower. I was already
imagining that within an hour or so when Chanie awakens I will tell
her the story of how Mommy brought home a new baby sister, and
then I would carry her up the stairs and I would introduce her to the
newest family addition. I came out of the shower and from the
corner of my eye I caught a glimpse of the white lace protruding out
of the banister. I quickly ran over to the stairwell and couldn’t
believe my eyes. There was an empty baby bassinet, halfway down
the stairs, stuck in mid-air. I craned my neck to look down the
staircase for Chanie or the newborn. It was empty.

I went into the nursery, nothing there. I went into Pessie’s room,
no sight of either of them. I went back into my room and there I
saw the baby on the floor with a blanket over her face, in an
unsnapped undershirt. I quickly scooped her up and yelled out in
horror. Lele’s face was covered in blood, ugly red scratches at all
angles. Her hands flailing and a hoarse cry. I must have been singing
in the shower, or have temporarily gone deaf, how did I not hear this
commotion? And there was Chanie. Sitting on my bed with the

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baby’s outfit in her hand. She gave me one look and said, “This isn’t
our baby”. As the baby whimpered, I cried. The first thought that
came to mind was that I will probably get arrested for child abuse.
Then I thought, how in the world did Chanie amble up the stairs so
quickly and cause this destruction. She was just coming off several
bags of blood transfusion. And then I just spoke to Hashem. I said
to Him, you blessed us with this beautiful child. Give us the means
to protect her.

That night we made the decision to hire full time help. We were
very averse to it, since we didn’t want an intrusion into our privacy,
and I guess we thought we were super heroes. One look at Lele told
us we were in over our heads. We sent Chanie back to Yocheved and
Shuey and hired Doofie. As she bathed Lele you would hear singing
across the whole house, “Koo KOO Laylah, Laylah Koo KOO” but
her annoying voice didn’t bother me, as I knew she was going to help
us through the next few years.

Years later, whenever Lele would complain about her permanent

scratches to her face I would explain to her that this is what it means
to have a Special Needs sister. Going with Chai Lifeline on trips, and
Kids of Courage barbq’s is the fun part, but the scratches on your
hands and face are telltale signs that you are lucky enough to spend
time with this special girl and you wear it as a badge of honor. She
bought that for a while, and used to tell people that it doesn’t matter
how many scratches she has, Chanie is special. No worries, when she

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got a little older she milked it for all she got. She would ask me for
new Kipling bags and then would throw in, my face is full of
scratches at least I should have the newest briefcase. I would easily
oblige, but eventually it extended into high ticket price purchases and
it was bordering on extortion so I had to just put an end to it.

When Lele would come to me with yet another scratch on her

hand, or an earring ripped from her ear, I would think to myself, oh
boy, this girl will grow up and need serious therapy. She really is
getting the brunt of a special needs sister. Chanie was very jealous of
Lele. Anything she did would be a cause for an outburst. If Lele
would jump rope, Chanie would try to bite her, if Lele would ride a
bike, Chanie would pull her hair. It was Chanie’s way of letting out
frustration and I would always be torn. On the one hand I would
explain to Lele that she needs to run when she sees Chanie, (I
promise Chanie had NO NAILS, we used to cut them down to the
nailbeds, when someone has an intent to scratch, they will figure out
how to do it without nails) on the other hand I wanted them to bond.
Eventually Chanie outgrew these shenanigans.

Recently Lele had to interview me for a school project. Her first

question was to name a life’s challenge and how I overcame it. She
asked the question and then added, “And don’t say Chanie. She isn’t
a challenge. We are fine.” I couldn’t believe my ears. Really, was she
serious? So I asked her, “Lele, you really didn’t find growing up with
Chanie a challenge.” With a serious face she responded. “No. It’s not

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a big deal. I can’t stand when people use their special needs family
members as an excuse. It’s part of life. Plus, Chanie is regular.”
Bingo!!! No therapy for her. She took Chanie into a stride and didn’t
fuss over how her life may have been impacted. Lele, too, has a
special feel for Down Syndrome children. She loves photographing
them, and picking them up for Shabbos walks. Having Chanie in her
life has only had a positive impact on her. Chanie loves her siblings,
at every opportunity she lets everyone know that Pessie and Lele are
her sisters. Including at her recent graduation, she made a loud
announcement during the Congressman’s keynote speech that Lele
Katz is her sister. Lele is our baby after all!

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 11 YAY! MEMORIES!

In honor of Chanie’s Birthday I’ve asked our family and friends to

submit some of their favorite Chanie memories. I’m apologizing in
advance if I you are reading this now and would have wanted to
contribute but never got the message. It’s a week before the party
and I decided to get started on the book today. I put it on my
WhatsApp status – if you are in my contacts and are in the habit of
checking my status then hooray for you... and if you aren’t and don’t
check status, again I apologized but please do share with me. Every
time my daughter goes to my sister’s house which is every Sunday,
Hashem should give her koach to keep up this Funday Sunday
tradition; she calls me with new adorable things Chanie says and
does. Every call makes my heart flutter anew.

One Sunday Afternoon….

The bell is ringing – “Who is it?”
“It’s Channnniie… Pessie, I’m here... where are you? Come down…
Oh HELLO…YAY! Can I have a licorice?” and Chanie is in the

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house.
You feel it everywhere. It’s Chanie time and our entire household is
overtaken by her.
As she walks into the kitchen she notices a guy crouched near
the sink.
“What’s your name?” She asks loudly.
“Mr. Itzkowitz!” he bellows back.
“Who are you?” she inquires.
“The plumber.”
“Can I get you a drink?” she offers.
“No, thank you.”
“How do you feel?” she asks caringly.
“Very uncomfortable,” he responds.
“You are a nice man. I like you.” She says warmly.
“Oh well, thank you.” He says shyly.
Chanie Katz you just made Mr. Itzkowitz’s day!

The phone rings. “I’ll get it!” Chanie calls out.

“Who do want to talk to? Pessie it’s for you.” She hands over the
phone and pulls it right back. “Can I talk to her...? You’re busy”…

It’s lunchtime. “Can I help you?” she quips. “Of course!” I respond.
Chanie is scrambling eggs and the preparation is so much fun. My
husband walks in. “Hello Feter Shea”she exclaims!
“Hello Shprintza Yenta!” he calls back.
Chanie giggles at the joke.

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“Dee bist mein feter. I miss you!” she says simply.

We talk about her family she loves it. I ask her “Where’s
Breindella?!” and her laughter is contagious.
“Let me help you up the stairs,” as she grabs my hand. “Here, hold
onto me.” She instructs. And so I listen… off to do some laundry.

As the children come home she runs to welcome each one with open
arms screaming their names. She gets them all to hang up their
jackets.
“Hello Shprintzah Yenta, “D’vorahla says.
“Your father said that already,” she quips. D’vorahla has to think of a
new joke.
“Chanie, let’s smash some cookies for cheesecake crumbs,” we called
out to her.
“I’m scared” she whispers.
“It’s fun.” D’vorahla says, “All you have to do is punch it down”
But Chanie’s sensitive heart wouldn’t want to hurt anyone, anything
not even a cookie and so she PATS the bag of cookies so caringly.
Once more, we are lucky to catch a glimpse of her inner self…
-Tanta Pessie Spira

“Chaya Surie, I want to talk to Malky. Call Malky, call Malky. Hello
Malky, Hi, you want to talk to your mother, here's your mother.
Chaya Surie, Malky wants to talk to you.” Vintage Chanie.
We love you!

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- Chaya Surie and Malky Wachs

"Sprite the lemon tasting fuzzy soda. It tastes so much better since
Chanie joined us on a melave malka pizza outing. And she obsessed
over sprite. She probably repeated herself a gazillion times. Ever
since, it has become a popular drink in our home and it tastes so
much better!
-Blimi. Chany Heny Shmuly Reizl Yuda Weber!!!

Cousin
Of course
Understandable
Stands for Suscher!"
Irresistible to say and
Never forgets who is
MY COUSIN.SUSCHER

Having a bad day? Schedule a visit with Chani Katz. She’s sure to
evoke positivity. In tandem with ego boost. Chanie is the best
cheerleader. “Yay, Esti Englard!!!! I like you!’ And then the kiss.
Gone are the blues.
Thank you Chanie for the free therapy moments.
Happy 21st birthday Chanie.
We look forward to celebrating many more together!!!!
-Tzvi Dovid and Esther Englard and family

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Happy 21st Birthday Chanie

Don’t know where the time went I met you 9 years ago driving
my Red Lexus and you always wanting to go for cheese blintzes your
favorite food. Till today when I see Chanie she wants to know where
is my Red Lexus. I sure miss those days. Let’s party and celebrate this
amazing birthday your unbelievable Mom prepared for you!!!
-❤ Rosie

There are just way too many “Chani Katz stories”. It’s very hard to
choose specific ones. Chani is a splash of humor and good
heartedness. The times of getting her to say Chai Lifeline instead of
Chaifline, or MRI instead of making it into a word EMERIY, or
singing Williby Walliby and saying the correct (ahem) rhyming words,
or singing keep smiling keep shining songs, or stealing my walkie, or
having her ask real great questions at my shabbos table will always
make me laugh hysterically! I don’t know what I’d do without Chani-
I know I wouldn’t laugh as much!
Happy happy birthday Chani!!!
Oh boy- Chani’s legal now!! L’chaim!!!
-Love, Goldie Dicker :)

Chanie Katz lights up my life. I was once sick in bed with my

wisdom teeth pulled out and she came to visit with Batsheva Schon

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they brought me a milkshake. I’d also say bad words and Chanie
would say “Sari Soibelman I’m gonna pour soap in your mouth.”
Then one day in camp she chased me around camp and poured soap
into my mouth.

I love you Chanie. Happy Birthday from across the world.

- Sari Soibelman—Oh oh I said a bad word. Deeni, Sari said xxxx.

It's hard to pick one great memory re Chanie, there are so many!
When I think of Chanie I think of joy, of sunshine, and of radiating
love for life and everyone around her. Every time I see her she greets
me with an excitement that bubbles over and is instantly contagious
and inspiring. But if I had to share a memory it is a greeting that she
might have outgrown but makes me smile every time. It's of Chanie
asking for gushers. "Did you bring gushers?" "Hi, You have
gushers?" No matter what Chanie was going through at the time, she
still greeted everyone with joy, and a request for candy. I'll always
love that about her :)
-Pessie Grumer

No matter how long she hasn’t heard my name,

I know she will recognize me just the same.
No matter how hoarse my voice has been,
I know that Chanie’s guess will win!
So when I’m feeling like nobody cares,
I ring her phone and “It’s Chayala Raab!” she cheers.

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No matter what time of day

I just know what Chanie will say
No matter from where I call,
I know Chanie will not stall.
No matter how far I will be,
What will Chanie say with glee?
… AND THEN..
Happy Birthday Chanie! We all have a lot to learn from you and your
most special parents.
- Chayala Raab

My favorite Chani is in the morning. Her cheeks are the rosiest pink
and her eyes go crazy (Hello, long eyelashes!!). Her voice gets super
squeaky as she asks where all her shmattes are, her new cellphone,
her blackberry, her red cellphone, her big camera, her digital camera,
her wallet, her sunglasses, car keys and her notebooks. Those of you
from camp might know what I’m talking about, but if you haven’t yet
had your Chanie Katz morning dose, you are missing out in life!!
For all the times you said "Lele's NOT my sister" I hope you know it
really is my greatest honor!!

-Lele Katz, your loving baby sis

Dearest Chanie,
I cannot believe that you are 21!!!

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It feels like just yesterday that I helped your mother plan your 6th
birthday party! It was quite the bash in its time and I have no doubt
that this party will make that one pale in comparison! My only regret
is that I can’t be there to celebrate with you in person!
Not a day has gone by since that birthday 15 years ago that you
haven’t been on my mind, or in my tefilos! I miss you terribly and
would love nothing more than to have you for a Shabbos or have the
opportunity to spend a Sunday afternoon together...like in the old
days! I wish you and my kids could hang out together!

May the RB”SO give you many more years of gezint to spread your
unique brand of zany kookiness amongst all those who love and
adore you (myself included)!
Miss you!
Lots and lots of love,
-Sarri and Chaim “Noach” Nayman and Family

There are so, so many memories from so many years ago! The
walking memories - walking around the grounds of Camp Simcha
from 5 to 8am everyday as the whole world slept except for us, and
then walking again each night singing hamalach trying to get tired
enough to sleep....walking laps around and around the square hallway
of the hospital as you managed to get the attention of every single
passing person...the amazing traveling memories - to Orlando, to
California, and of course to SAfrica (where you even won the hearts
of the Big 5 who came out to see you)...the driving memories -

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driving around and around and around Brooklyn with nowhere to

go....the sleepovers at my house and at yours when your parents went
away....the millions of French fries and chicken nuggets you ordered
(but didn’t eat!) from kosher delight....painting you a room almost
bright enough to match your personality....Chanie, you lightened up
those years for me. Your energy, bravery, resilience, spunk and love
for people and for life has inspired me for the past 18 years that I’ve
been privileged to know you for, even from afar. Mazel tov on your
birthday! Please continue being the truly amazing person that you are!
Love you!
-Love, Tziri (tzinner)

Mommy Schon "where is shaya?"

Mommy Schon, found her camera and is bringing it along to the
party to take pictures
We Love chani Katz!
-Mommy Schon

Wow! Happy 21st Birthday Chani! We cannot believe how time has
flown by! It was just yesterday when we were taking walks around
Camp Simcha at 4 o'clock in the morning! Since then you have
become a part of our family. From visiting Bobby Brown, going to a
wedding, or even just rides in the car, it would not be the same
without you. Sari and Malca look to you as a big sister and a true
example of what it means to live with simchas ha'chaim. Of course,

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we smile when we think of the helpful tips you provide along the
way... Like never allowing me to leave the house in a snood! "Only a
shaitel!" as you would say! Speaking of which, remember the time you
decided to give my sheital a trim?!? Or threw your braces out the car
window?!? You sure know how to keep us on our toes! Kidding
aside, we all love you and look forward to seeing your beautiful smile
when you enter our home. We wish you many many more happy
years filled with simchas for you family!
-Love, Deeni, Yossi, Sari, Malca & Tzvi

Dear Chani
Happy 21st birthday to you! I think about you every day and miss all
those years we spent together! There will always be a spot in my heart
for you. I loved waking up each morning to you at camp cheering
“beast Batsheva” take me for a walk. All the best questions and
conversations always took place at 6 am on our morning walks. Chani
has the strength to make everyone smile and put people in a good
mood! I love you always!
-Batsheva Senderovits

Whatever mood you are in… if Chanie enters the room there is an
automatic change of moods—it’s all upbeat and fun! She always asks
for her cousin Yossi, and makes sure to get even with me when I
tease her. “Duvid says I’m a kreppel… He is a kripple!!!”

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-David Katz

Chanie you have feelings to everyone, you are pure, you shine into
our hearts. You remind me of a song I heard when I was a little
Girl. “See the wind, they bend and sway, the wind is asking them to
play...” Chanie you remind me of the wind. Pure! Chanie is also pure.
I wish you health and happiness, and you should be zoche to moshiach
tzidkeinu bimherah byamanu amein with all of us together.
-Zaidy and Bobby Knobloch

YY’s favorite attention-demanding phrase (because who can refuse a

two year old who reminisces?!) is “when I was a little baby, I called
yogurt “gogurt!”

Well, when I was a little girl all my memories have one thing in
common. There’s always a smiling, usually screaming, definitely
laughing, Chani there with me. Telling the teacher that my sister
ripped my homework out of sheer excitement to see me was a way
better excuse than a hungry dog, and -whom am I kidding -
completely plausible.

One of my favorite memories which completely captures Chani’s

essence of sincere and total love, involves my broken arm and it’s
bulky cast. Chani pestered me daily to “just take it off already! Please!
Get it off!” And when the cast wouldn’t budge, she pulled out her

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knives. Literally. She went for the kitchen drawer and tried cutting
the thing off. When our butter knife (as young as I was I still knew an
actual knife plus Chani plus my handicapped arm equaled a situation
no one should be in) proved not to be a match for my hideous blue
cast, she tried the arts and crafts scissors. After some tries, she
wandered off and so did I.

I was resting in bed when I saw her. The image is sharp in my

mind still today and brings the best kind of laugh whenever it
surfaces. Chani walked up the stairs with the. Biggest. Pair. Of.
Scissors. A. Household. Could. Possibly. Own. We had a two foot
long pair of scissors for floral arrangements hidden somewhere. It
was ominous looking and boy was it large. Chani, with her one
working arm, managed to dredge it out and drag it upstairs to get my
cast off. I kid you not it was 50% of her total height. Needless to say,
it didn’t do the trick.

The day I went to get it removed, Chani joined us. I have never
seen someone have that amount of joy in relation to a cast. The girl
was beaming. Chani told everyone we came in contact with (think
every last person in the waiting room) that her sister was getting her
cast off, as if the Powerball winning numbers were underneath. She
waited outside when the dreaded cast was cut off, and gave me her
signature one arm- yet remarkably strong- hug when I returned. She
took one look at the soft transition cast I received and burst out in
anger, and I quote verbatim “this is what you call taking off a cast!?!”

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The disappointment in her voice still rings in my ears. The sincerity

and complete love she has rings in my heart. It eclipses everything.
Nothing gets between her and the people she loves, and that is
something I will never stop being in awe of.

Since then, Chani has managed to get to more places and more
people than anyone could predict. She shuffled her way straight into
so many people’s hearts, there to stay. She is a doer- and the fact that
she does it all with one arm & foot limp at her side is one of the ten
million inspiring things about her.
- Pessie Kraus

Somehow, the world hasn’t figured out that my name’s not as typical
as they thought. Instead of the I it’s a Y. Faygie. Not Faigy.
Somehow that always irked me. But there’s an exception to every
rule. Chanie Katz took it a step further. ‘Peggy, I like you. Peggy you
look nice. Peggy, where’s your father?’ And it never irked me when
she mispronounced my name. Chanie is Chanie. Coming from
Chanie, anything goes.
Happy birthday CHAN’Y’!!!!
-Love Fa’y’gie Englard

Being family friends with the Katzs (our besties) always comes along
with its quirks. Having a second older sister is surely one of them. Let
me explain. Chanie would link her arms with mine at every get
together. ‘What’s your name?’ Typical annoying older sister. Always

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in control. Yet, as you grow older, you learn to appreciate moments

like these. They offer comfort and love. Sisterhood does rock after
all.
Happy 21st birthday Chanie! May Hashem send you all the
sisterhood love!!!!
-Love Surie Englard

Chani Katz!!!!!!!!!! Happy birthday on this special day. Your smile and
happy energy brings happiness to the world.
-Love, Nechama Salamon

Chani and I spent a shabbos together around 15 years ago! She

was adorable and delicious! She held my hand throughout shabbos
and kept saying “Sarala you will marry Eli”! As a single girl I was so
excited to hear it! Fast forward 3 months and I was engaged to an Eli!
Chani is a special human who endeared all of us through her love and
perseverance! Chani we love you! Happy Birthday!
-Sarala Rubin (Chopp)

Happy Birthday Chani!!

We always love your smile and fun phone conversations:)

Love, Esti Lamp (lamm)

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Mazel tov mazel tov! That is (by now) Chanie’s customary greeting
every time I see her. From the first time meeting her at my l'chaim,
up until today. Sometimes she finds new reasons, usually she banks
on the fact that my wedding was just recently (almost 4 years now).
But for Chanie that's way more than enough to celebrate. Actually for
Chanie everything is a reason to celebrate! Every interaction she has
with anyone and seriously anyone will involve lots of jokes and
hilarious shrieking laughter. With Chani, it’s always appropriate
timing for a friendly question. From the police officer who pulls us
over “sir! You left your lights on! Do you want to go shut it?” To
questioning the Rav’s credentials during davening “are you the rebbe
here?!” The world is truly a happier and friendlier place because of
her.

So today it’s our turn to celebrate. We're celebrating the unbelievable

progress she makes on a daily basis. We're celebrating the amazingly
fulfilling life she has. We’re celebrating the closeness she and her
family share. We’re celebrating the love and pride they have for her-
which she so truly deserves. We're celebrating that she has such a
great network of friends. But most of all we celebrate the miracle that
is Chanie Katz.

-Mordechai Krausz

When Chanie was ten years old I had the honored appellation of
“babysitter”. Her school bus would drop her off at my home and we

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would spend two to three hours together while her parents were at
work. Throughout this time I kept a “Chanie” notebook and jotted
down her cute antics and some of her adorable sayings. In rereading
them now, a few may seem dry, however at the time they were
hilarious and adorable. She really kept us all on our toes. We had
two very full delightful years, and memories to last a lifetime. Below
are some highlights.

Goldy sings "if you are happy and you know it, eat potatoes…" while
feeding her supper, Chanie sings "Yum, Yum"

Chanie sees an old man sitting on a bench near the bank. She asks
him politely "man, can I sit with you?"

Spots an elderly woman strolling down the street with her home
attendant. She turns to me and says “I love them, they are so cute”.
She then sidles up to the woman and asks, “Where are you going?”
The woman responds and Chanie plies her with “And then…” “And
then…” the poor woman falls prey until Chanie gets the entire weeks
agenda. Chanie quips, “Do you have a candy for me?” The woman,
still taking her very seriously responds, “yeah but its very old, you
have to wash it first.”

Her expressions… “What are you crazy???? It’s retarded!” (Editors

note. Oiy vey, we need to censor our language at home!! )

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After going to Surie's house, she asks Goldy "did we have a good
time?"

Goldy says “I’m so farshlumpet" so Chanie instinctively takes s off

her cap and says” I'm so farshlumpet also”

She had the nursery rhyme, what’s your name, Mary Jane, What’s
your number cucumber, down pat. Whenever she was in earshot
when someone asked for my number she would exclaim “cucumber!”

Being that I had no toys or playmates for her, she looked for other
avenues of fun. The concept of an incinerator where you throw a
bag of garbage into a surprise door on the wall and it disappears
fascinated her. Everyday she would nudge me, “NU… let’s go to
the river already” the word incinerator was too hard for her to
pronounce.

Chanie poured herself coke until the brim, picks it up and yells
“Yoim Hashishi”, I asked her with whose permission... Her quick
answer “Hashem!”

In the pizza shop, she would announce loudly “I want two slices
pizza” I respond, “And I want three!” Chanie turns to me “No you
can't have, you are going to brech!"

Every so often I’d make myself silly and pull my turban over my eyes

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to give Chanie a little laugh. One day she asks me, “Goldy, cover
your eyes with your turban.” I followed suit. Unknowingly to me,
she quietly walks over the garbage bin and disposes the plate with her
full supper.

Chanie asks, “Where’s Lele?” I respond that Lele was learning in

school. “No she's not. Only Totty Learns!”

Chanie always knew when to switch off from English to Yiddish and
vice versa. When Zaidy Knobloch calls, she asks him “Vos is
Nayas". She also has a keen sense of noticing the difference between
hair and wigs. Some people are mortified, how does she know it’s a
wig. “I love your sheitel!”

When we left my mothers house she says "Thanks for everything!"

Her pockets are always bulging, sometimes heavier than her briefcase.
I ask her what she is hiding in there “shmuntzes!”

Chanie picks up my salt shaker brings it close to her eyes, admires it

and says “it's gorgeous"

When her aunt Surie asked her where is your mother, she answers
"Its none of your business"

Chanie says I love Hashem...

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Chanie asks to do something dangerous, I tell her that I'm afraid your
mother won’t let... she answers... that she is afraid she will.

Chanie at Age 11
As we leave her house I tell her to say goodbye to Susan, who is her
Asian home attendant. Chanie turns to Susan and says “I no come
back.” She has a growing vocabulary of Manderin words. Cantonese.
“Subsai! Say, Say, CHABBABONG, Nee How... “Chanie makes it
her business to practice her linguistic skills on the manicurist and
anyone else she sees with squinted eyes “New How” her beings “You
speak Chinese?”

When waiting to cross the street, Chanie passes the time by chanting
"red light, red light 1, 23.”

In middle of eating snack, she says "Milk, milk where are you?" She
loves speaking to inanimate projects. “Goodbye Pizza” she squeals
as she swallows the last bite!

Chanie has flown to South Africa, has been to Disneyworld time and
time again, California, Israel, every amusement park around the
country, yet when I put her onto a 25 cent carousel in front of
Amnons pizza she calls out with delight, “Goldy, do you have your
camera?” She takes the time to enjoy the little things in life.

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Chanie pushes her carriage in the street and doesn't let me hold on,
I’m afraid she will bump into passerby so I ask her again, “Please
Chanie can I hold on? I'm a little girl. I need to hold onto the
carriage. “She answers...” Then go inside the carriage and I will push
you!”

Her favorite pastime is walking up to a complete stranger and

shocking them with, “Hello!! Is it appropriate to talk to strangers?”

Some of Chanie’s hilarious expressions and sometimes repetitive

questions...
Are you my matron? Are you chassidish?

She jumps on the redounder (trampoline) in Surie’s house, then turns

to Surie and asks her “is this a gym?”

When its time to go home... let’s go... let's go fly a kite. Besiras Tovas

Are you going to call the leben store? She asks when she realizes we
are out of chocolate leben.

Dinner preps with Chanie at my side are always fun. When we crack
I open a raw egg she exclaims “Oh! That’s juice” She touches the
raw chicken "it's wet". I pack away the toaster oven... and Chanie says
"good bye toaster oven"

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When coming in from the street into my quiet apartment, Chanie

exclaims “hello nobody!"

When talking about camp simcha she turns to me and says "you are
staying here." Goldy says, who is taking you? "My bus driver" Tell
Hashem to bring you.

She has seen me jot down her little antics in my “chanie book”, one
day she picks it up and asks me “Should I write down the jokes?”

How can you not fall in love with a little girl who despite her
limitations truly enjoys every minute of her life? True, she cannot
read, she cannot write, she cannot text, she cannot dial a friend
without assistance, yet she lifts her head above it all and smiles as the
world smiles with her!
-Goldy Twerksi –The Babysitter!!

Either 18 or 19 years ago Eli brought chanie to shul on Shavuous.

That Shavuous was the start of a new radiance that entered our
family. It started with Chanie being her smiley mischievous self-
spending her time with our family morphing into me gaining a
brother I never had and Sara Yitty gaining a sister (that she can relate
to). While Chanie has surpassed with Hashems wonders all our
expectations we are grateful to Hashem for everything that he has
done for Chanie and for sending the whole Katz family into our lives.
The inspiration we have gleaned from Chanie, Eli, Briendy, Pessie

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and Lele is beyond words, the lessons we have learned from your
actions are unlimited and continue as we live and breathe.
May we be zoche to wish happy birthday to chanie for many more
years and may Chanie be as entertaining as she is for many more
years!
-Zevy, Sara Yitty Weintraub and our entire extended family

To our very Dearest and Beloved Chany,

We remember like yesterday that very special day when a beautiful
princess was born into the Katz family. Your joyful, charming face is
loved by all, you enlighten every situation and always make us smile.
We love spending our Chol Hamoed trips,Shabbos and Yom Tov
with you. Your great sense of humor warm and loving personality
made us feel welcome wherever we were. Calling us on a first name
basis made us feel so close and important. You knew once that I was
working very hard at a new job, and constantly asked me "how's your
new Boss? Is he nice? How is Sandy doing?" you moved me to tears
with your constant sensitivity and warmth. After all these years of
great memories shared together, we want to take this wonderful
birthday opportunity to wish you only the best, and may we continue
to celebrate together in health and happiness!!
-Love, Soscher, Shaindy "Sandy"Lipa, chani, Shmaya, Yosef Duvid,
Layala and Chayala

My Chanie,

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Being lucky to spend almost half of my life with the cutest, funniest,
kraziest k id in the world. It’s almost impossible to come up with "a"
favorite memory.

From the day she was born there was that extra spark in her that
hinted that she's not your ordinary child.

On her 6 month birthday my worst fears were confirmed. However,

at that exact moment that we learned about Chanie's diagnosis, I also
became a REAL father. A father that has to take care of his child
without expecting anything in return. Unconditional love to the
fullest extent.

The journey was long and difficult, tiring and trying, exhausting and
depressing, painful and tearful. However difficult it was, it didn't
matter cuz that was my duty as a real dad, UNCONDITIONAL
LOVE.

Whether it was the countless nights circling the hallways of Sloan

Kettering with Chanie (and the I. v. Pole) in tow, or chanie pulling
out her i.v.line & chemo dripping all over. Or the many seder nights
or Rosh Hashanahs & Yom Kippur & Chanukah parties and many
other important events that I spent in the hospital or the countless
fevers and infections & seizures & bad results from m.r.i. scans &
multiple surgeries and on and on and more on. It was my duty as a
real dad with UNCONDITIONAL LOVE to take care of my Chani.

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However, little did I know at the beginning of the journey that not
only will I get something in return from her, but I got something
much more than I could ever ask for? I got the greatest gift on earth.
CHANIE.

No words can do justice to describe how lucky and blessed I am to

be her father & having gone through this amazing journey with her.

All that's left for me to say is THANK YOU CHANIE for providing
me with a life long of memories that only a father can appreciate...
-Love you forever Eli /Totty

When Chani comes to mind it is sure to always put a huge smile on

my face! I can't believe it's been 10 years since our summers together
in camp! There are a few funny stories that stick out in my mind.

One day is camp everyone was benching. Chani was busy talking and
we were trying to get her to be quiet. She asked why and we told her
everyone is thanking Hashem for the meal... "Chani do you want to
ask Hashem for anything!?" She says yes! And with her eyes closed
and an intense shuckle she began... "Hashem! Please give me....
CANDY!" We laughed so hard! She always kept us on our toes.

I'll always remember when she would come visit my family everyone
would get so excited she was coming. My mom always had a new gift

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to give Chani. She loved collecting gifts and would hide them under
her bed. She took her new gifts very seriously!

Another funny story , it was Deal Day in camp and I had a friend
Roxanne come to visit us. Chani was so excited to make a new friend.
No matter how many times we told her Roxanne name she insisted
to call her Roxoff...it took a couple of times until we realized she she
was hearing rox-on and she decided to instead call her rox-off. Her
sense of humor always makes her so fun to be around!

There were times I would call her Chanele and whenever I would do
so she would respond and call me Jeannele...I can still hear her saying
it.

Chani Katz I love you a lot!! Happy Happy Birthday and Many
More!! May Hashem continue to bless you with the best sense of
humor and the ability to make everyone around you smile! I love you
and miss you a lot! Always know that even though I live across the
country I think about you and the amazing times we had together
constantly!
Wish I could be there with you on your big day! Know I am there in
spirit!

Love always, Jeanne

Chanie you light up everyone's day

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“Hi! Wwhat's your name” is what you say

Always smiling no matter if outside is dark and gray
Not even in the hospital which isn't at all child's play.
Yes, the knobloch family is glad that your here to stay
Hope that you really enjoyed your 21st birthday!
- Leah Spitzer

The Mekimi trip- Chol Hamoed

Many years ago my daughter Miri went with Chanie to an overnight

trip with Mekimi. At supper everyone was so shy and stiff, the
atmosphere was undeniably uncomfortable. The Emcee, tried to
lighten the mood and welcome everyone but, the dining hall
remained quiet. Suddenly from a corner Chanie yelled out "Act your
age!" Magic, within seconds, the ice melted and the party began!
Laughter and smiles abounded, and the rest of the trip was enjoyed in
friendly togetherness.
CHANIE- the REAL Emcee, par excellence!

The Shidduch
All the Knobloch cousins went on a trip to the Staten Island Ferry
and lucky for me, Chanie was keeping me company. I felt safe to
unburden myself to Chanie and I said: "Berish needs to be a chosson
already" Chanie closed her eyes tight, and loudly proclaimed "Berish
should become a chosson! Quickly!" I realized that this was a great

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moment, and so I quickly added "to a very special girl!" when Chanie
finished her bracha, I had no doubt that this wasn’t just a simple
encounter.
To our great delight, three weeks later, a very special girl joined our
family- Yides Posner! I am positive that Chanie had a really big hand
involving this shidduch!

The Hotel
My daughter Libby was 10 days old when this story took place.
Briendy called to say she has a free 4 day stay at the Swan Lake
Resort, and can take along an extra guest. I grabbed the opportunity
and off we went keeping it a secret to all, just how old my tiny baby
really is. Late that night we were talking, Chanie in bed with Briendy
and Libby in a carriage near me. We fell asleep, but woke up shortly
after in a panic- Chanie was gone! I turned to take Libby, and then
realized she and her stroller were gone too! Briendy ran into the halls
shrieking "Chanie, Chanie, Chanie!!!!”, while I stood inside, frozen in
place. I pulled myself together, and spotted Libby’s fuzzy blanket on
the bathroom floor. I bent down to retrieve it, and to my utter shock,
I found my baby sleeping peacefully still cocooned in her blanket!
After Chanie was found she calmly explained the baby was in need of
company.
Chanie Katz... free babysitting, newborns welcome!

Chanie on a shopping spree

My children ask for Chanie all the time. When is she coming next?

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The house becomes alive when she enters. After a few minutes she
usually asks to go shopping, to which they quickly oblige, an
opportunity to shop? Who can resist.

They take her to Mendel’s pizza. She isn’t fully through the door
frame when you hear her yelling on a very loud octane “Mendel!!”
He comes around the counter to personally greet her and usually
gives her a free slush. Next she asks to go to Amazing Savings. They
tell her she can choose whatever prize she wants, but she always
insists on new supplies. She enjoys acting like an adult, she wants
briefcases that don’t have knapsack straps she wants serious looking
binders, notebooks and folders. It’s always a joy to walk through the
aisles with her as she greets all the other customers.

It is no secret to all that Chanie is the Chanie Katz we all love only
because of her wonderful parents who put in so much joy and life
into her. But that is another book of its own.
- Shaindy Weiss

Coney Island Beach. Helicopters overhead. Shomrim on radios.

The Knobloch crew on a frantic search. Briendy, her heart in her
hands in contact with Eli and Hatzallah, Where is Chanie?

While the family played with sand and water. Chanie got ahead with
her life. On line in Luna Park for a good ride!

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Ft. Hamilton Park, Chanie is on a swing, instead of minding her own

business like everyone else around her, she is polite and friendly.
How are you? Do I know you? Do you live near the park? People
smile and answer, someone cares about them. Chanie cares. A
cheerleader spreading happiness and love. Briendy’s goal to make
Chanie happy ACHIEVED.
-Surie Shimanowitz & Faigy Knobloch

One Friday night when Chanie was my guest in Williamsburg I asked

her not to make her dress dirty. When she saw me getting dress she
asked me where I was going? When I told her we’re going to visit my
aunt Pupa Rebetzin (senior) she thinks for a second then tells me:
“Wow Bobby I’m SO IMPRESSED.” When I asked her why she
answered me; because you have Rebetzin’s for friends.

One Motzei Shabbos she was in my bedroom playing with her

phone. When I asked her to come out into the dining area she
answered “one minute I’m speaking with my husband.”
- Bobby Katz

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In life we are limited by standards,

Many differences divide us,
Setting us far apart

But somehow, you melt away every barrier,

Making friends out of strangers,
it’s the gift of an open heart

Everywhere you go, inspiration sparks,

With a love that shows, you make your mark
Teaching others to, take up your cue,
Touching all you meet

Chorus:
See the light as it shines in your eyes, it’s blinding,
But do you know, how far it goes
You make everything whole with your smile as you keep fighting,
One day you’ll know, maybe one day you’ll realize just how far it
goes.

In life we are limited by expectations

When storms destroy all our perfect plans
Shattered dreams can tear us apart

Yet somehow, you broke through every barrier

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Never stumbling over pity

You gave everything for her

You stood with pride, remaining strong

Staying by her side, helping her along
Driving away the night, never losing sight
It’s all because of you

Chorus:
See the light as it shines in her eyes, its blinding
But do you know, how far it goes
You made shards to a whole, with your smiles as you keep fighting
For all that you do, she says “I love you”

Chorus:
See the light as it shines in your eyes, it’s blinding,
But do you know, how far it goes
You make everything whole with your smile as you keep fighting,
One day we’ll know, how far you’ll goooo……
Composed and Played By: Malky Wachs, Sang by: Lele Katz & Chaya D.
Benjamin

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12 YAY! YAY CHANIE!

When Chanie was diagnosed I too was lucky enough to receive

various blessings from well wishers and yes, although inside I felt like
screaming, I smiled when yet another person said, “She is a special
neshama. Hashem chose you as a vessel to cultivate it.” In the early
days it was hard to swallow. I don’t need or want special. I want
normal.

As a school girl, perched in my seat I would observe the

classroom. Some girls would be taking copious notes, others were
relaxing, maybe some were quietly munching on food oblivious to
their surroundings while I would be listening to the teacher and start
questioning. For me to fully take in a lesson I needed to make sure
the teacher was not just paying lip service. I would raise my hand and
start cross examining, I would asks twisted questions delving deeper
and deeper. Eventually the teacher would tell me to see her after
class or I would give up on my own. I have to say, some of the
teachers made the cut. They knew their stuff. They were able to
quote proper sources. To this day I have a special relationship with a
few of these teachers. But what I remember most was the feeling of,
‘why am I different? Why can’t I just whip out a pen, take notes and
nod my head?’ After Pessie was born, as I benchted lecht Friday
night I would say a special tefillah asking Hashem that she doesn’t
becoming too much anything, not too bright, and Chas Vasholom

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not too dumb. I remember thinking “please, nothing TOO!”.

Naturally, I wanted her to have an easier less challenging experience
than I did while growing up. In 10th grade a friend and I began a
“QFI club. Quest for Intelligence “under that guise the two of us
went about attaining knowledge, world facts that are completely
irrelevant, sometimes getting into trouble with our zany truth and
dares. “Ask Mrs. Kaufman if you can go to the bathroom. On your
way out pull down the map from on top of the chalkboard and circle
Harare. It is the capital of xxx fill in the blank”. These are the types
of notes we would pass down to each other until we would get
caught red handed. At the time I thought I was living the life, but in
hindsight I realized that I needed to be reigned in. I would have
gained a lot more by keeping an open clear mind to absorb the
wonderful lessons the teachers prepared.

And then Chanie came along. She definitely fell into the “too
“category. Doing Homework with Lele would be interrupted by
Chanie saying that she needs to do homework too. I would give her
Lele’s reader and tell her to read. “Read, read, read,” She said as she
pointed at the words. We tried teaching her math concepts,
alphabets and shapes but her adorable little brain could not
comprehend. What letter is this, I would point to a B. “Triangle!” She
would respond triumphantly.

What she couldn’t do academically she made up for in many

ways. Her neshama is supersized! She can sense if a person is

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hurting inside just by looking at their face. “Don’t be upset!” When a

person is raging inside “Don’t be mad.” When someone is berating
underhandedly using a sweet tone she says “Stop yelling at her. She
did nothing!”

From when she was young we noticed she had a sixth sense, a
premonition. To us it’s Hashem’s way of saying, I am here with this
child. The phone would ring and without reading Caller ID she
would know who was calling. The bell would chime, someone would
stop by to visit, and Chanie would announce before we went to open
the door “Beigeleisen is ringing the bell.” Oftentimes it would
spook us since she would name people who we haven’t heard from
or seen for a while and we would chuckle to ourselves “yeah right.
Dr. so and so has no reason to call us now.” Yet moments later the
phone would ring and there they were on the phone scheduling a
new test or with other tidings.

We started asking her questions thinking she had Ruach

Hakodesh. When I was pregnant with Lele I asked her if I was gonna
have a meidela baby or a yingela baby. She answered the second
choice. We switched it around. A yingelah baby or a meidelah baby?
On cue she responded meidelah. Eventually we came to realize that
we don’t have a built in Naviahas at our disposal. However to this
day she shocks us very often with random statements that prove to
be true.

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I sit on a park bench with her and listen in to her conversations

with some of the park regulars, “Chou Chou. You feeling better
today. Do your exercise.” Or “Chayimello you no have surgery
anymore?” She is truly concerned for everyone. Anytime we hear an
ambulance’s siren she immediately perks up and asks if everyone is
okay. It hurts her heart to think that there is someone inside being
rushed to the hospital. She always asks me. “They don’t need oxygen,
right? Not an IV pole. Right?” Her special neshama is constantly
davening for all of us.

When she was a tiny tot we tried teaching her to say ‘I love you’.
She would respond with ‘I love me’. As many times as we told her it
was I love you she would keep repeating I love me and then laugh to
herself at our exasperated faces. My grandmother A’H once heard
this exchange and she said “Ich hub hanuah. Klig iz zee”. We really love
ourselves first. We say I love you but mean I love me. She says I love
me but means I love you. True to her word Chanies love for people
is all encompassing.

In closing I want to ask forgiveness to Chanie. Although you will

never get to read this book I know your heart understands. You can’t
express your true feelings but I know that deep in the recesses of
your mind you have hidden memories of the many occasions you
were not treated with the respect you deserve. The one too many
times we left you at home because it was easier to ace through a
niece’s wedding without having to look for you — yet again -

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somewhere in the kitchen with the mashgiach, or when the family

flew off to Israel, Arizona, Italy, California to name a few and we
arranged small day trips for you back home. I know that you tried
sparing us the guilt and so you said “Yay!” When you waved goodbye
but I’m sure there was a small little hole that can’t be filled.

I’m sorry for buying Lele her DSI, IPOD, IPADS, Cameras, Guitars
and whatnot and not shelling out the extra money to buy the same
exact model for you. I remember when you discovered one of her
newfound purchases hidden in the closet you came to me with the
evidence, tears in your eyes and said “But I am older!” We did try,
we bought you DVD players “lafftops” cellphones,
tablets, digital cameras but it wasn’t the same. And you felt it. We
tried to buy the break-free gadgets.

We meant well but if the coach crossover bag had a bright

pattern you would say “give it to the baby! I want your Louwee!
(Louis Vuitton) and when one of your friends bought you a knockoff
you immediately rejected it and came to ask me if you "can borrow
yours". I'm asking you forgiveness for not giving you the diamond
studs you deserve on your birthday.

At Jeanie Franko's wedding you were dolled up, and felt as

though you were a sister of the bride. You asked to wear my
diamond hoop earrings and in a weak moment, I agreed. I was
outside at the dessert area when I heard the announcement, "Found a

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diamond hoop earring. If it is yours, please come to the orchestra!" I

went to reclaim my jewel, and off to
the dance floor to put it back onto your ear. There you were,
dancing in the center, red faced and beaming! I checked your ear--
GONE- the other earring was off as well. We looked around and
didn't find it.

That memory and the memory of all the other earrings and jewelry
we bought you that were lost by the days end is what is keeping me
from buying you the earrings you truly deserve. The same studs I
bought for your older sister Pessie and plan I’m Yirzah Hashem to
buy for Lele when she turns 18.

I ask forgiveness if this trip down memory lane does not do

justice to your noble and special character. I may have lamented that
at this age, we still find ourselves in a tiny bathroom stall at weddings
trying to change you. Yet do I adequately express your appreciative
nature? How, while I am gritting my teeth trying not to get my dress
and your dress dirty you sweetly look at me and say, "Thank you Ma
for pampering me. You are the best!" And I know you mean it. Or
you say, "I promise I won't do it again." As if you can control these
moments.

May Hashem keep watching over you, and give you that extra
special sparkle, as you keep lighting up our world and the world
around us.

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