TRUTH

My brother Naftali got  married a few nights ago.  notice how i said 'my brother'. not my step-brother or half-brother or adopted brother. we always introduce each other that way- simply as brother and sister. thats because there are no distinctions or differentiation in our blended family. there is only love and respect here.  love, for the brother i've known since i was old enough to remember anything. respect, for the commitment of marriage that my father and his mother made to each other. under the chuppah they joined our families together with unconditional love and acceptance and i have been blessed to be part of a warm welcoming family ever since. Now that my brother has made those same promises, i'm no longer the lone female in our immediate family circle. So will you please take a HALF STEP sideways and make way for  my brother and his bride :)

Celebrating Life

Tall in stature, soft in nature
supportive witty and kind
always easygoing and positive
with a twinkle in your piercing blue eyes

intense love for your family
proud of your great-grandson Yossi
fortunate to have met you, that's for sure
now my life's richer than before

As we live your life lessons,
we know you're watching us from heaven,
may your memory,
be for a blessing

these are my remarks from the funeral of my beloved zaidy binyomin michoel ben shmuel sholom.

 

in my father's words:
23 years ago i met my father for the first time. the joy was unmeasurable. at the first meeting there was an instant joining of our souls. the longer i knew him the more i realized his excellent qualities.  despite our lifestyle differences, there was never any friction between us.  he and his family made us feel as if we had never been apart.  he will be missed and remembered fondly. may is soul ascend to high places.

  

Untitiled

Remember when it took forever
for things to work out?
time dragged on endlessly

then then day came and all fell into place
everything moved at a very fast pace
troubles disappearing into instant oblivion

it seemed like Yossi might never get healthy
as if we'd shuttle to and from the hospital for an eternity
and just when you are about to crack
suddenly you're looking back
a year of stability has passed

a friend who stayed close through the years
getting on with life ignoring her fears
single and searching but never alone
now she's building a home of her own

she found him at last
the wedding was a blast
and over in a flash
days pass before you can grasp

but now im waiting again for that wonder
that will replace the darkness and thunder
challenges anew each day
when is salvation on the way

in the pain of the moment its easy to forget,
how good it feels when things work out
when things are so frustrating we forget
the amazement we had at seeing Hashem's hand
involved in the minutest detail

hold on to that vision for a while
when the darkness seems to last for miles
the resolution will come soon
and it will feel like one short afternoon.

mommy miriam

barren and empty handed you prayed for me
but i dont know you

you  carried me for 9 months
but i feel as if we've never met

you dreamed of me since you were a little girl
but you are just a figment of my imagination

you waited for someone to call you  'mom'
but i dont see you when i talk to you

i've been without you for 27 years
i dont know any different

i searched and searched but i could not feel our connection
i felt so far removed

and then i gave birth to yossi
my very own bundle of joy

and only then i've begun to feel your presence
even though you've been watching all along

each time yossi reaches new milestones
i wish even more that i'd met you, i wish i could share with you

each time life gets overwhelming
i dream of you being  here to pick up the pieces

when i look at the photos of you holding me,
i see the same pride and fierce protectiveness that i have for yossi

ive experienced the unconditional bond that yossi and i have
and now i know you.

 and when yossi calls me 'mom'
my mom means the world to me

a day of crazy

waking up with children in middle of the night is never a fun thing. it reminds you that your day probably wont go according to plan either (the broken or shortened sleep certainly doesnt help any)

here's how today jam packed day  went down:

 2:30 am
yossi: "mom mom"
me: "go back to sleep its the middle of the night"
yossi: "hysterical laughter
me: "its not funny"
yossi "yes it is" followed by more laughter! (yes he actually said those words)


 7:45 am
wake up yossi for a 10:00am fitting for his leg braces.
discover that the feeding tube came out of yossi's stomach.
apparently the tube came out some time during the night, probably several hours earlier, because the hole had already started to close and i couldn't get it back in. Que a trip to the ER and canceling the first appointment of the day. I nearly panicked thinking of the worst case scenario but not to worry, Gd has everything under control as usual.  G-d sent us a parking spot right outside the ER, an empty waiting room and super sweet and knowledgeable doctors. Thank G-d they were able to reinsert the tube and taught us a few tricks to keep in our back pockets.


10:15 am
leave the ER and drive hubby to work and then head up to the Bronx for a neurology appointment and a different hospital. chat with about half of the hospital staff since we are there so often we know everyone from the doctors, nurses and secretaries to the housekeeping staff and the security guards.. we got good news today, yossi is doing so well that we can start to wean him off of another seizure medicine. its the 3rd one we are working on this year. I would never have thought yossi would come so far in one year. we are so so fortunate that G-d has given him good health and that our doctors share our joy. they are so proud of Yossi's progress and so filled with wonderment to see the change in his strength and his stamina.  we arent out of the woods yet. yossi's is still recovering from the damage that the steroids have done to his immune system.  please pray for his continued recovery and for success in weaning him off of more medications and for G-d to guide the doctors.


2:00 pm time for another long drive home in bad weather (tired mama must get off the road) and an impromptu  play date. if only the ground was dry so we could sit outside and enjoy the warm weather.  playing indoors with friends is good too!


5:00 pm mommy needs socialization too! we were joined by a friend for homemade dinner  (yes i actually manage to cook once in a while) and a relaxing evening at home (read: converse with your guest while she trails you around the house as you prepare medicine, give medicine, take care of yossi and clean up the hurricane that you left in your wake after the morning rush to the ER)

8:00 pm bed time for yossi. finally a chance to sit down and relax. or fall asleep over the computer before its time to plug in the feeding tube for the night :)
ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

I Spy

I spy with my little eye
a few seizurs flying by
dont get to comfortable here
you are not welcome near

**** this was written in October (on a peice of paper that i just found buried under a pile of bills) when yossi had a short spike in seizures after breaking his leg. fortunately they disappeared very soon after ****

Zonogram (zonisamide): A Goodbye Party

6 at the start
now down to 4
1 more seizure med
is no more

tiny capsules
powdery mess
our adventures together
have come to a rest

goodbye,counting, alternating
getting it right
welcome back to
Yossi's appetite

although you did help him feel great
its getting to much to keep straight
zonogram a farewell to you we extend
we hope never to need you again