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.

Angel on earth

in the dim light i watch him sleep peacefully
arms outstretched like an angel

the hustle and bustle of the day has past
and now a beautiful silence reigns

i think not of tears and drama
i think not of the mess, worry, and heartache

the magic of my angel touches me
the sound of his infectious laughter lifts me up

his ringing voice propels me down the winding lanes of life
his trusting arms envelope me and make everything right

there is hope for tomorrow after all
so much fun to be had, so much good to share

goodnight sweet angel sleep tight
tomorrow the day will be bright

*written in part by my lovely softa (savta chaya hunter)

The Last Apple

Dov opened the fridge looking for a snack.
when he turned around he had an apple in his hand and a strange far away look on his face.
"whats wrong?" i asked, "its just a snack"
"this is the last apple" he answered in a choked voice*


the last apple.....
the one i wish i could preserve forever
the apple that represents so much more
the last apple from Mrs. Slater

Its been two years since Mrs. Slater passed,
she moved to the block just 2 years before that
2 years is such a short time,
it goes by in a flash

with busy lives our encounters were few.
but all it takes is a moment,
to leave an impression forever

all it takes is one moment of caring
one moment of sincerity
to know you're not alone

When she thought of us and sent over produce, even while she was unwell
When she offered us a free photo shoot the moment she met yossi

someone so unassuming leaves an imprint on your soul
with deeds that seem so small
but the love that shines through can only be the work
of a person with giant character

these are the moments that warm my heart and give me hope
these special memories follow me always
 lessons to last a lifetime




*this story took place in Cheshvan- Oct/Nov of 2014

When you dont know what to do just laugh

We are blessed with wonderful people that help us alot but there are still some days when i'm on my own.  like today for instance. Dov had night class directly after work and Yossi's aide canceled last minute.  I took a deep breath and decided to take one moment at a time for a relaxing evening at home.

 when bed time came around there was:
medication splashed across the counter
 toys scattered around the living room,
a soup bowl overturned on my lap
and a puddle on the bathroom floor.
objects were slipping out of my hands
and it seemed like everything was out of place.

its a big project doing everything myself
going back and forth around the house
and every time i was about to loose it
there was yossi all smiles
waving and giggling and chatting.

i didnt have time to get dizzy
the laughing made me take a step back
and laugh at the mess and laugh at myself
and enjoy the moment with yossi.

when there's nothing you can do about it anyway,
just laugh and embrace it and carry on