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

Broken

A kid in a  leg brace
on a slide
breaks a leg
how i dont know

but he's a kid
and these things happen
at least this time
its a more common setback

away from the hospital since March
this caught me by surprise
i'd finally started living life,
i'd stopped waiting for the next crisis

This is the 4th broken bone he has had
In the grand scheme of things, its not too bad
hoping his newer milestones will come back fast
and not be forgotten in the past

let's enjoy this while it lasts
so come on over and sign his cast
signatures on the front front from top to toe
there's a space on the back for your name to go

when you ask permission he might tell you "no"
and even a "yes" might be in jest
you'll grab a marker and he'll roll farther
farther and farther away with a laugh!

slowly the pain is subsiding,
in 2 weeks for a boot we are hoping,
so our little guy can hobble around
and crawl on all fours once again

now that he is feeling better,
he has discovered the delight
of the loud noise the cast makes
when it bangs against the floor or wall
i guess its not so terrible
and in a few months we wont remember
much of this at all

Mixed Emotions

its amazing how when i  work hard
and try my best
keep organized
keep going
one step at a time
and im suprised and fulfilled
when i accomplish

and then in a minute the mood is ruined
the satisfaction gone.

feeling sadness and pain
intermingled with
happiness and joy and pride
all within a few moments

my heart drops to my stomach.
its physically traumatic
to experience all these emotions
one right after the other

life is as fragile
as our emotions
things can change so drastically
from one minute to the next

new babies being born
and others forever gone
sickness side by side
with exciting milestones

the older i get
i become less and less
used to this

how much longer can we live
in terror and anguish and fear
why must your children suffer so much
no one deserves this

please send moshiach
so there will be peace upon the earth
a time when everyone can cherish the sweet moments
without waiting for the other shoe to drop

Rosh Hashanah Revisited

Sitting in shul
doling out toys
and snacks
and hugs

siddur in hand
child up and down
first in the stroller, then a chair
then on my lap

soon its time to stand
when the shofar sounds
hands wrapped around
a little boy so sweet
siddur out of reach

Eyes closed tight
the shofar blasts envelope me
they shake me to my core
and i offer up a silent prayer

Please Hashem no more pain this year
no more suffering and anguished cries
leave no one empty, broken, or bereft
no health scares or violence or theft

leave me no questions
no confusion or doubts
only answers and  certainty
that you alone have sovereignty

help me always be aware
that You are always here
that You'll always be a listening ear
every time I shed a tear.

grant me my dreams, make them  good for me
Give me clarity to feel your guidance at every moment
to know and see and understand
how all events are in your master plan