After 8 years of marriage Dov decided it was time to get a plastic cover to protect his tallis bag. While he was at work i unpacked our purchases and put dov's tallis bag inside his new cover. When he returned home Dov offered his thanks and commented how nice it looked. He followed his compliments with the following statement:
every morning i daven in the same shul, so why do i keep my tallis bag at home? because we were in and out of the hospital at a moments notice, so frequently. i never knew when i'd need it, and i didnt want to be stuck with out it. now, we've been out of the hospital for quite a few months, i no longer need to keep my tallis bag at home!
Dov's statements impacted me greatly. this really is a major turning point for us. true, we are still juggling all of the medications. and we are still in the slow process of weaning yossi off of prednisone. but yossi is tolerating the frequent changes nicely. and we are HOME in OUR HOME. our beloved cleaning lady was out sick last week and the house did not fall in utter chaos. because i am home, and i can take care of it.
when the clock changed yossi started to wake up at a normal hour again. now that several weeks and several dosage changes have past, yossi is sleeping late again. but its ok, because i can work while he sleeps. its ok bec we are home and not commuting to the hospital - an hour each way.
now im overloaded with deadlines at work and no matter how much i straigten up the house there is always something out of place. no matter how much laundry i do, it seems like its never finished.
LIFE IS BLESSEDLY MUNDANE!
Monday, December 1, 2014
throw caution to the wind
i have a rule,
i never visit
with a friend
if they are sick
but today im throwing caution
to the wind
i dont want yossi to catch
something that his body
cannot fight
but today im throwing caution
to the wind
my friend has a cold
and her child does too
dov and i have bad colds
and yossi does too
true he's had a few extra seizures
with this cold of his
but he;s already sick what
more can we loose
so today ive done something
that i never ever did
we went for a playdate
to someone who is sick
today i threw caution
to the wind
Wednesday, November 5, 2014
a modern day miracle
I was riding the subway today. 2 young teens (they looked to be brothers) sat down in the same car as me. they had a pack of some sort of cards and proceeded to look through the piles and talk with each other about it. they had no electronic devices and did not use profanity. and it was PEACEFUL.
what a shame that such a thing is a rarity. it gives me a little hope that things wont turn completely digital.an adult, i hope when yossi is an adult, people will still remember how to interact with one another.
Sunday, October 12, 2014
oh, the things we can do
oh the things we can do
when seizures go away from you
look at how much we play
every single day
you take a long ride on your bike
to shul on shabbos you can hike
when we go on fun trips,
i don't need to hold you on my hip
no need to lift you high,
to stand by yourself you try
i don't have to worry that you will fall
as you walk down the hall
you go up the stairs and down again
and then you cruise around the bend
crawling on all four,
what else is in store?
slow and steady over here
you'll soon be back in underwear
at the end of the day you are so tired
but from your stamina I'm inspired
you do not collapse in a heap,
while the day is still at its peak.
i think need a nap
to keep up with the tricks in your hat
you are healthy and strong
and you laugh all day long
you tap to the beat of every song
i've waited for this for so long
oh the things you can do
when seizures aren't near you
when seizures go away from you
look at how much we play
every single day
you take a long ride on your bike
to shul on shabbos you can hike
when we go on fun trips,
i don't need to hold you on my hip
no need to lift you high,
to stand by yourself you try
i don't have to worry that you will fall
as you walk down the hall
you go up the stairs and down again
and then you cruise around the bend
crawling on all four,
what else is in store?
slow and steady over here
you'll soon be back in underwear
at the end of the day you are so tired
but from your stamina I'm inspired
you do not collapse in a heap,
while the day is still at its peak.
i think need a nap
to keep up with the tricks in your hat
you are healthy and strong
and you laugh all day long
you tap to the beat of every song
i've waited for this for so long
oh the things you can do
when seizures aren't near you
no news is good news
Like everyone else I've been busy juggling work, housework, back to school, and yomtov. Unfortunately that leaves me with no time to post updates on Yossi. Today blogging is my top priority, time to do something for myself!
Yossi is doing Great! it is such a Relief!!!!!!!
we just had a stretch of 3 days completely seizure free and it felt so good!
today we went back to seizure land with a string of 4 seizures in a row a present from super early wakeup combined with the raining weather in the morning. overall though yossi's seizures have been holding steady at under 5 a day and he is finally able to live again! without seizures disrupting his day every few minutes, he is even gain new skills.
over the 3 week summer vacation his communication skills completely disappeared because he was missing the intense practice that he usually gets. baruch hashem now that school is a few weeks in, his communication is back, he is making clear choices of food and activities, and using his "yes/no" and "i like/dont like" cards to have great conversations with us. he even added a new word to his verbal repertoire : cantaloupe (and its about time too because he LOVES cantaloupe)
Yossi is making such wonderful progress all while tolerating the rapid changes in his medication. we've continued decreasing Yossi's prednisone and we have now reached the halfway mark! usually every second decrease is combined with a slightly increased dose of valium to keep the seizures away and thankfully he is not too drowsy (a side effect of too much valium). it does make for an interesting schedule, because every time we make a change, yossi sleeps longer while his body adjusts. he has arrived at school well after 12 noon on more than one occasion. if we were to wake him up it would trigger his seizures so we definitely live by the rule "never wake a sleeping baby", ok he is not a baby, he is a very big boy who is clever and growing, and he has an awesome school that is totally understanding.
so if you wonder why you havent heard any news in a while, its cuz I've been busy driving yossi to school at all kinds of strange hours :)
Yossi is doing Great! it is such a Relief!!!!!!!
we just had a stretch of 3 days completely seizure free and it felt so good!
today we went back to seizure land with a string of 4 seizures in a row a present from super early wakeup combined with the raining weather in the morning. overall though yossi's seizures have been holding steady at under 5 a day and he is finally able to live again! without seizures disrupting his day every few minutes, he is even gain new skills.
over the 3 week summer vacation his communication skills completely disappeared because he was missing the intense practice that he usually gets. baruch hashem now that school is a few weeks in, his communication is back, he is making clear choices of food and activities, and using his "yes/no" and "i like/dont like" cards to have great conversations with us. he even added a new word to his verbal repertoire : cantaloupe (and its about time too because he LOVES cantaloupe)
Yossi is making such wonderful progress all while tolerating the rapid changes in his medication. we've continued decreasing Yossi's prednisone and we have now reached the halfway mark! usually every second decrease is combined with a slightly increased dose of valium to keep the seizures away and thankfully he is not too drowsy (a side effect of too much valium). it does make for an interesting schedule, because every time we make a change, yossi sleeps longer while his body adjusts. he has arrived at school well after 12 noon on more than one occasion. if we were to wake him up it would trigger his seizures so we definitely live by the rule "never wake a sleeping baby", ok he is not a baby, he is a very big boy who is clever and growing, and he has an awesome school that is totally understanding.
so if you wonder why you havent heard any news in a while, its cuz I've been busy driving yossi to school at all kinds of strange hours :)
Thursday, October 2, 2014
G-d's Humor
G-d has a funny sense of humor. All the time.
Sometimes we get it and sometimes we don't.
G-d always listens to our prayers.
He answers in ways we would never expect.
He answers when we expect it least.
I always try to see G-ds hand in everything that occurs
and when I'm privileged to see it clearly
G-d amazes me over and over again
i never tire
of that feeling of wonder
of seeing all the pieces come into place
even things as small (or big if you live in nyc) as a parking space
today was one of those days
where g-d brought a gift to my doorstep
my older brother lives across the country.
between the time difference and our schedules
we are not in touch very often.
family is everything to me,
and i always wished that we'd be closer
out of the blue he called me
to say that he is here in town
he came over to visit
and spent a nice evening with my family
its so good to see my brother again
is like a weight has been lifted off my chest
a long day of cooking
turned into a wonderful afternoon
it means the world to me
for my brother to see that I'm happy
that we are all healthy and in a better place
my heart soaring all day
from this big surprise,
from this feeling of wonder,
that G-d settles everything
when its meant to be
it amazes me all over again
that just when we despair,
Hashem takes care
He gives us what we need
Hashem just gave me a
huge boost,
a big dose of encouragement
i feel a huge sense of relief
and a tangible belief
that everything else that I've been asking
and praying for will indeed come to fruition
i see it so clearly, in this moment
i wish i could hold onto this elation and clarity forever
Sometimes we get it and sometimes we don't.
G-d always listens to our prayers.
He answers in ways we would never expect.
He answers when we expect it least.
I always try to see G-ds hand in everything that occurs
and when I'm privileged to see it clearly
G-d amazes me over and over again
i never tire
of that feeling of wonder
of seeing all the pieces come into place
even things as small (or big if you live in nyc) as a parking space
today was one of those days
where g-d brought a gift to my doorstep
my older brother lives across the country.
between the time difference and our schedules
we are not in touch very often.
family is everything to me,
and i always wished that we'd be closer
out of the blue he called me
to say that he is here in town
he came over to visit
and spent a nice evening with my family
its so good to see my brother again
is like a weight has been lifted off my chest
a long day of cooking
turned into a wonderful afternoon
it means the world to me
for my brother to see that I'm happy
that we are all healthy and in a better place
my heart soaring all day
from this big surprise,
from this feeling of wonder,
that G-d settles everything
when its meant to be
it amazes me all over again
that just when we despair,
Hashem takes care
He gives us what we need
Hashem just gave me a
huge boost,
a big dose of encouragement
i feel a huge sense of relief
and a tangible belief
that everything else that I've been asking
and praying for will indeed come to fruition
i see it so clearly, in this moment
i wish i could hold onto this elation and clarity forever
Nothing is too big
nothing is to big or small for G-d! in the last 24 hours:
1. yossi has been completely seizure free
2. the credit card company blocked a string of fraudulent charges overnight
3.i got super close parking spots at all the stops i made yesterday
4. the timing was very tight this morning but dov drove yossi to school anyways on his way to work so i could stay home and rest (and take care of other urgent things like typing this post)lo and behold there was no traffic at all and dov is on time for work
5. our favorite family-family gabay-sent a representative to be our guest for tishrei
6. said family member brought a huge box of DAMYEL :) (heaven french chocolates that i thoroughly enjoy)
thank you Hashem for these wonderful gifts! i can't wait to see what else He has in store for me this year!
1. yossi has been completely seizure free
2. the credit card company blocked a string of fraudulent charges overnight
3.i got super close parking spots at all the stops i made yesterday
4. the timing was very tight this morning but dov drove yossi to school anyways on his way to work so i could stay home and rest (and take care of other urgent things like typing this post)lo and behold there was no traffic at all and dov is on time for work
5. our favorite family-family gabay-sent a representative to be our guest for tishrei
6. said family member brought a huge box of DAMYEL :) (heaven french chocolates that i thoroughly enjoy)
thank you Hashem for these wonderful gifts! i can't wait to see what else He has in store for me this year!
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