ask me after

ask me after and i'll tell you what we've done
because our plans change that fast all the time
without a plan i'm lost, but having one,
doesnt mean i'll stick to it

sometimes i cant make up my mind
or another family member is conflicted.
then things happen beyond our control
its all HASHEM's work

i plan to the last detail, but really im just along for the ride
we have to work hard if we want something done
but i usually watch it unravel before my eyes
as Hashem puts together something much better

It always works out in the end.
Its just a matter of how calm or crazy
it will be on the way there

im fighting to slow down and stay calm
trying to enjoy each step of the process
If only i can remember when its hard,
the marvel that i feel each time things come together perfectly

Boating Bliss

we went to the store and ended up on a lake.  how you ask?

 well..  Sunday we ran an errand in a nearby town then googled a local playground. there we found a sprinkler and a lake with boat rentals.  amazingly there was no line, a far cry from the crowds in Brooklyn.  so the 3 of us climbed into a boat and went pedaling around the lake . its so much fun to do something adult that our child can enjoy too. its so much fun to watch yossi explore like its his first time (he's been before as a baby/toddler but there is a special joy in seeing your child  old enough to understand what he is doing and remember it)

we came home at the end of the day tired and satisfied. i was struck by how normal the day was.. for one day, for a few hours we were just a regular family enjoying a typical weekend together.

A Prayer answered

a problem shared is a problem halved.  on friday i reached out on facebook for prayers and support, just putting it out there took a weight off my chest. i was able to relax and put my worries away for shabbos.

this week has been a whirlwind of activity. the house is buzzing with people of all ages- friends from out of town who i seldom see are staying over. its hectic but i feel so alive, surrounded by my dearest friends and biggest supporters.

 i took a trip with one of them to the ohel, it was brief and i was distracted because i had yossi with me but i knew that i had come to the right address.

while juggling this week's regular schedule on top of appointments and everything else, i somehow managed to daven  each morning, mostly because yossi was still asleep.

a new initiative that ive started with a friend is a gratefulness challenge (we adapted the idea from an article online). im exchanging daily texts with one friend, listing the things im grateful for

all of these things are small little things that add up eventually. when you do these things, over time your outlook changes. all these things  add up to just a few minutes in my day but im uplifted and i have more energy  and more will to get things done. im also more cognizant of Hashem's guiding hand in my life.

today in the midst of a full, high pressured day our entire plans for the coming days got a big shake up. normally such a change would put me in a tizzy  but im not upset one bit. i cant help but feel lighter, more free. im just marveling at how much sense it makes, the potential, the possibilities.i would have never gone in this direction, had Hashem not caused it. but HIS plan is SO much better .  its a wonderful feeling to recognize the divine providence, in something so small and mundane.I know Hashem is always listening but today i see my prayers answered.

A Prayer

im reading my email and ready to scream,
Another set back in this long drawn out process
The angry mama bear is starting to rise up in me
What have i not done, what would i not give
To get this sorted

My defenses are up and im ready for battle
 i take  a deep breath and let it out slowly
 im left with deep sadness

I offer up a prayer to G-d
I turn to my friends to carry that plea
Because i cannot do it alone

Carry my prayers heavenward
My hopes and dreams for tomorrow
So that we'll have what we need
For the people we were created to be
For the people we were created to care for
And for the people we hope to become

Im still staring into the unknown
My queries Not yet answered
I know not how and when
But im at peace because Hashem's got it covered

Camp Gan Yisroel

There are countless Gan Yisroel camps all over the world, all inspired by Gan Yisroel Parksville, the brain-child of the Lubavitcher Rebbe, all run by His emissaries and therefore infused with his energy, power and blessings. As a child i attended them, as a teenager i worked in them, and now that my child is of age, he gets to be a Gan Yisroel camper too.

Being that yossi is a special needs child i never thought it possible, but thanks to the K2BK  (kool to be kind) pilot program, Yossi is now a virtual camper at Camp Gan Yisroel of Martin/S. Lucie County Florida and we are seeing the Rebbe;s blessings first hand.

After a wonderful time last year, receiving videos and projects from the campers, Yossi started off the season by donning his camp t-shirt and joining a spirited line-up on the first day of camp via video chat. yossi has been having trouble verbalizing lately (side effect of one of his meds)  so he just watched smiling from ear to ear. however the minute we hung up he clearly asked 'more more'  so we were compelled to call right back and the phone was passed around among  the campers much to his delight.

i never knew that speech therapy was included but you can never underestimate the power of jewish children and the power of a rebbe!  yossi gets so excited every time we say 'camp gan izzy' and we cant to see what else this season has in store!

From Florida with Love

Our annual trip to Florida as become a ritual of sorts.  we visit with relatives during the week and then go for shabbos to visit a bunch of friends all concentrated in one area. i really look forward to this trip its a chance to recharge and maintain connections with the people we love. 

I like my friend's shul too. the rabbi is very welcoming and there is a great mix of lovely friendly people in attendance.  on our most recent trip, a gentleman i dont know approached us at the kiddush.  as he started to ask about yossi's age and condition i was expecting to be bombarded with tons of nosy questions and unsolicited medical advice.

 i was completely floored when he said the following:

'i see that yossi really likes the electronic toy he is playing with . our child has alot of these types of toys  and with the recent birth of our second child, our friends gave us even more. we have so many and we dont need them- can we ship you a box for yossi to enjoy?' 

to say i was caught  off guard is an understatement. the offer was unexpected, humbling, and encourgaing.  how very wonderful and thoughtful this man is. his children are very fortunate to have such a perceptive parent and with any luck they will grow up to be as kind and selfless as he. 

this week the promised box came in the mail along with a gift card to purchase more items. yossi was excited about everything in the box and has already picked out his favorite.  and as for me, im overcome with emotion, watching yossi play and feeling the love all the way from florida.

ER Adventure

Well i knew we would end up in the hospital again at some point. We had a nice 2 year hiatus but life happens and we just roll with it. I Thank G-d from the bottom of my heart that it was NOT seizure related which is new for us and reassuring in a very weird way.

We sat down late and Yossi choked on his first bite of dinner- a cucumber- leaving his air way partially compromised. Thank G-d he was able to breathe the entire time and he didnt change color but he was clearly in distress. his body slackened, his head down and drool and mucus pouring out of his nose and mouth.

A call to Hatzalah brought an ambulance and several volunteers one of whom remembered us (and we remembered them) from the local hatzalah fundraiser in september. At that event we had  made a point  of introducing Yossi to local members in a non emergency setting. im glad we did because in the time of emergency it was calming to have help from some who was slightly familiar with us already.

As divine providence would have it  a pediatric ER doctor  was visiting his sister that lives on our block.   he saw the hatzalah members and followed them up the stairs to assist. he called ahead to his colleague to advise him of our arrival. i had never seen him before and i dont know his sister but we were grateful for his help.

En-route to the hospital the cucumber became dislodged from Yossi's throat and i was able to fish it out of his mouth. with his airway cleared he began to relax and feel better waving his hands as he normally does.  by the time we arrived in the ER yossi was sitting up on the stretcher and rocking it to and fro.

We were in the ER for a couple of hours just to do a chest xray and monitor his vitals to make sure everything went back to normal.  the hatzalah members were quite happy to have a printed sheet with yossi's information cuz it meant they could go home first and write the report later. the hospital nurse was also happy- having everything already written was much quicker and easier for her. it also simplified my life- i was able to focus on yossi instead of having to remember details about medications and medical history while i was frazzled and pre-occupied. hurray for printed lists!!

Even at its fastest an ER visit still takes a couple of hours (plus the drive to the hospital and the time leading up to that)  so my planned night out went down the drain.  i was so bummed to miss our shul's challah bake. i dont often get out to events and shiurim and i was looking forward to a nice evening.  well i got an evening out- a little more than i bargained for.

 My friend was visiting for Shabbos that week and decided to take over my kitchen and whip up a batch of Challah dough. she asked me if i would like to make the bracha. that was very sweet of her and kind of made up for missing the shul program. ( im so lucky to have such amazing and thoughtful friends)

Fortunately choking is a rare occurrence for yossi. (only choked once before at age 2 when he swallowed a triangular kippah clip) we normally cut his food into small bites and he has no problem. it just happened that he accidentally got a large piece of cucumber on this night.  We're thankful for hatzlah and the great hospital staff and we're all relieved to be home and healthy and moving on to more happy (hopefully) adventures!

Big Apple Kindness

Amusement rides, arcades and climbing mazes are virtually a rite of passage for children these days. most children can boast having partaken in at least one of these activities. special needs children are no different so on a recent sunday i loaded yossi in the car and we headed to Funstation- our local amusement venue.

i called ahead to ask a few questions because we'd never been before- i got sweet clear responses and i was grateful to hear that the place wasnt so full.  still i was in trouble the moment yossi spied all the flashing lights. he was off running and crawling in all directions while i tried to understand the packages for purchase and the 2 different token machines one for rides and one for arcades.

the lady at the front desk (incidentally she was  a manager)  immediately jumped in giving me an unlimited wristband and tokens .  she told me to go around and try out the different attractions, see what  yossi was able to do, and square away my bill at the end.

grateful for her thoughtfulness i accepted the wristband and off we went stress free to enjoy a fun day out.  yossi had a great time exploring and i had a wonderful time just focusing on him. after riding the helicopter for the 5th time in a row i was starting to get dizzy and id had quite enough of the noise and the lights so we returned to the front to pay.  as i approached the counter the manager told me "this one is on us" to which i replied  "im happy to pay" and she then said "he has a big smile, seems like he had a good time, now you'll know which rides he likes and you can come back again to play"
I had to turn away as i started to cry. i was totally surprised and overcome with emotion. i wasnt expecting a free pass. i was expecting to tire yossi out so he would sit long enough for me to pay (we came without the stroller). her offer to pay at the end made so much sense because as yossi gets bigger not all things are practical for him to do. i was amazed at how naturally she accommodated us and at her kind gesture. you can bet we will go there again!

as yossi gets older we are more limited and i always have the worry of the future on my mind.  im encouraged to know that there are people who care and see my child to be just like any other. and im overwhelmed and thankful for those people who go out of the way to help yossi enjoy his childhood.

Seesaw

I'm up, you're down
we're not on common ground

when im sad you're happy
then my sadness pulls you down

I pick myself up and start anew
but now i'm worried about you

you're rushed, frustrated, and stressed
I'll try my very best

to put the pieces back together
so at ease you can rest

I wish i can wave away the hurt with a magic wand
and accomplish everything with the flick of a thumb

Instead im moving forward minute by minute
until once again im weary

cuz i cant make more hours in a day
but your optimism is still catchy

there is something to look forward to
but i just have to find it

buried under the daily monotony
 i just need to uncover it

visit a friend and energize
a prayer lifts a weight off my heart

now im ready again to face reality
everything looks brighter

now as we tread carefully through life
we'll keep each other steady

chosen

there are millions of people in the world
each one is chosen, handpicked by G-d
put here in this world for something special

that special something isnt fame
it isnt fortune
it isnt to be an inventor
or a trendsetter

we are each chosen for something unique
each has a role to play
each little piece of our lives carefully chosen.
part of a bigger picture

every place we live,
everything that happens to us
every step we take
and every choice we make
we are chosen,

we are chosen to be inspired
we are chosen to uplift

sometimes we are lucky enough to appreciate
the pieces as they come together
everything so mundane and insignificant
woven into an intricate web or reason

to see it clearly  takes my breath away,
to marvel at the wonder that is life
and at the creator that chose us

healthy healthy healthy

This week we are going back to the hospital but its not a bad thing: we are going for a BASELINE EEG.  i'd always hoped but never thought that yossi would be healthy enough.  now that his seizures have been controlled for a while the doctors want to see what his brain patterns look like without seizures so they will have something to compare to all his episodes.

to be sure yossi is STILL having seizures but he's down to 1-3 a week which is basically none...ive always been afraid to over-medicate him so we've always struck a delicate balance between the seizure meds,  but we were tip toeing around it too much. we never increased the valium quite enough to be able to reduce another med without seeing increased seizures.  so this week we increased his valium to make sure that no seizures are round for the eeg.  we also increased it in a larger increment than usual so the side effects are hitting him harder. i hope his appetite and energy will be back in short order.

 we are down to 4 seizure meds. we've kept this balance for a while and so we've been able to change other medications.  we switched yossi's reflux medication to another that was safer for his bones.  that in itself took many weeks of swapping bit by bit.

 the doctors dont want to adjust his seizure meds at all for a while, we havent had success reducing any of the meds.  we;ve tried each one and the seizures came back.  so while i wish he was on less medication, maybe this is the balance that he needs right now, its what works for him so im happy enough tht we have a good combination in place. so instead we will use this time to adjust the speed of yossi's feeding tube feeds (why that matters is a whole different post, it just has been very low on the priority list and we are finally at a place where we can take care of it )

i always wanted yossi to be like other kids... i got my wish.  in the past 2 months he had a cold, a stomach bug, a sprained hip, another cold... and now the beginnings of one of those yet again! while on steroids he was spared the joy of this childhood ritual but it caused him much greater ailments and risks.. so as annoying as it is that he is constantly sick , its incredibly, refreshingly normal.  so i wont sweat the small stuff, i'll embrace all the adventure that life has to offer and save the sweating for when i carry yossi up and down the stairs.  there;'s bound to be alot of sweating cuz he feels like he gained some more weight!

i cannot describe to you the feeling of seeing yossi transform into a different person as he gains weight. its done wonders for all areas of his development. as resistant as i was to the gtube surgery and as annoying as the tube is alot of the time.  im more and more grateful every day  that we got it for him.