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

A Tale of a pair of pants

Yossi outgrew his shabbos clothes so in mid-june i bought him 2 new pairs of shabbos pants. just 3 weeks later both pairs of pants disappeared when we spent the weekend out of town. We didnt realize they were missing until the following shabbos. we searched the house high and low. im usually very methodical and i was completely baffled. it took a whole week to figure out how/where we could have possibly lost them. our host searched as well and the pants did not turn up. its was a little upsetting because formal pants are quite pricey and i never loose things, ever.

After a bit of moping about, i offered up a prayer: Please hashem let this be a kaparah. keep the 2 pairs of pants and give me 2 of my deepest wishes instead. Keep the pants, better they be lost instead of anything worse. i gave up on finding the pants and prayed that i'd be able to see how it was for the best.

just this week the pants were found and they are on their way back to our house. it seemed a bit anticlimactic after all the soul searching and leaving it up to Hashem (when was i ever really in control?)

I may not have gotten what i wished for but i definitely gained something. Ive gone through this process time and again, you think i'd have learned by now, but i still get  aggravated/upset when things dont go my way. This incident was a another reminder that everything big and small is in Hashem hands. its a reminder to focus on my faith. Most of all its a reminder to keep working on my character.

Indeed there is a reason for everything. The pants have done their job!

Milestones

We're counting milestones instead of seizures! This concept is quite new to me and im really enjoying it! Yossi is too, he's been very busy making up for all the lost time.

last year at this time Yossi began crawling on all fours. he has continued to do so every day and has perfected the art.  he crawls in his crib, he craws from room to room, he crawls into the the toy box! He crawls steadily with familiarity and ease. its so nice to see learn a new skill  uninterrupted and get it down pat without a struggle.

Yiddishe Nachas

As part of our morning routine with Yossi we always daven, give tzedakah and kush tzitzis. its the same thing that all jewish little boys do every morning all around the world. yossi has begun participating more and lately he has been very excited when we put his tzitzis on him.

Yesterday when we were finished with the bracha on the tzitzis,Yossi continued holding his tzitzis properly in his hand while i walked away.  He kept looking at me and when he thought i wasnt watching he carefully brought the tzitzis to his mouth to give them a kiss. When i came back to tell him "i saw you and im so proud of you" he broke out into a fit of laughter! He knows that he did it right and he thinks he's so clever trying to pretend that he doesnt know how!

I get such pride watching him  kiss his tzitzis gently, and pursue the siddur with intense concentration. he draws close to him the mitzvos that we hold dear and it fills my heart with joy.

Rain, Rain Go Away?

Recently i went out for a solitary stroll in the fresh evening breeze. on the way back,  the skies suddenly opened up. i was about to sprint the last two blocks home when i realized that id rather be soaked and relaxed, than soaked and out of breath.

Its totally out of character for me (or maybe i just cant run like i used to) but i really enjoyed myself (walking extra slowly on purpose) even though i came home completely soaked from head to toe. i finally had this realization that im not in control so i just have to embrace the moment. it was very refreshing (literally) and very emotionally invigorating. i think i should walk in the rain more often- i can definitely use a reminder that Hashem holds the reins. You should try it sometime, as much as you dislike the thought of it, you will see your stress wash away and your tension disappear. who knows, you might even find it fun!

Mischief Maker

This past week, Yossi has heard me tell over his most recent adventures to anyone who walks in the door.  i've decided to stop annoying him by repeating them in front of him but i could not resist telling them over just one more time.. you certainly dont need speech in order to be expressive and opinionated. also he's funny as heck and laughs at his own jokes!

1. SLEEPY HEAD-
 In Language Arts class Yossi was very excitedly participating in the story the class was reading.
when they broke into groups to discuss the story Yossi suddenly appeared to doze off.  Due to his medications Yossi sometimes falls asleep in class but the teacher was suspicious so she put a toy in front of him. As soon as the toy came into view, Yossi lifted his head. "Gotcha" said the teacher, "no toy for you, now you have to do some work". Yossi put his head down and again pretended to be sleeping. the teacher told him "it only works if we didnt see you do it but, i KNOW you are pretending"  Yossi picked up his head again and laughed so hard- he was so proud of himself!

2. ON/OFF 
A friend is moving and she gave us some of the toys they are not taking with. She was so excited to get rid of  a play key board because " the sound is soooo annoying"  Yossi pounced on the toys when he saw them but promptly turned off the keyboard when he heard the loud high pitched sounds. ive since turned it on for him several times and he deliberately turns on the sound every time! i think he likes the sound of his own voice better!

3. IN A RUSH
Today Yossi took a trip to the zoo with Chana. from the moment he was strapped into his booster, Yossi impatiently tapped the seat beside him until Chana sat down. He wanted to hurry up and get there to see the animals.

4. ESCAPE ARTIST
 Shabbos day im preparing the salads and Yossi is playing beside me. Dov is sitting on the porch with a sefer next to the open door that let in a wonderful breeze. suddenly i look down next to me and Yossi isnt there anymore. my great outdoor's man crawled out of the kitchen, down the hall, and out the front door to get some fresh air with his Tatti!!! every time he saw me watching he stopped crawling until i went back into the kitchen- not sure if he was trying to sneak away or prepare a suprise, either way i think the hallway is longer than he estimated but he did make it out! usually its fairly simple to corral Yossi with toys, its incredible to see him take initiative and go exploring (is he trying to test my limits?)

5. SO MUCH TO DO
Yossi was playing on the floor after school while i sat on the couch with the laptop printing out his camp applications. He crawled over to me and started to climb on my lap and grab the computer. i tickled him and sent him to go play so he crawled back over to his toy box. 2 minutes later he crawled back over and tried to get on my lap again. i gave him kisses and sent him back to play. he crawled back over to the toys but a few minutes later he crawled back over to me.  i gave up my work with a chuckle and put him beside me to play.. i love that he crawls regularly now without a thought, something that was a huge deal a year ago. its amazing how he can get his point across without saying a word.




6. PLAYING FAVORITES
We were rushing around this morning getting ready for school and work. Yossi was chilling in his kitchen chair.  i opened the fridge to prepare a lunch for yossi and i observed that Chana had made one the previous night. out loud i exclaimed "Chana is that awesome !" (she really is)
Yossi broke out into a brilliant grin and a string of babbling upon hearing those words. he's very attached and so am i, we are so lucky to have chana in our family.



7. SPA SERVICE 
If you sit down in front of Yossi or beside him, he is going to put his legs in your lap. This kid have never met a foot rub he didnt like!


8. IF YOU'RE HAPPY AND YOU KNOW IT
Yossi is always happy and he loves to kick when he is in a cheerful mood. alas, when he kicks in his chair it loosens all of the screws and causes the chair to tip. we are always looking for ways to stop him.  this morning while yossi was kicking, on the spur of the moment i  began to sing 'if you;re happy and you know it kick your feet' .  it was a real hit, and we had a blast. then we got to the second verse ' if you're happy and you know it wave your hands'  lo and behold he stopped kicking and started waving his hands!  so he CAN listen when he WANTS to or when he is MOTIVATED/EXCITED! sounds just like every other kid i know!

left behind

goodbye my friend
but not forever
on to things bigger and better

i will miss you all day long
i cant believe you'll really  be gone

time to move to somewhere new
what will routine be like without you?

things dont stay the same forever
but i'll miss the smile that lights up any weather

your presence always here
now this change i cannot bear.

i feel so lost without my friends
i wish this day would never end

relationships fade with distance
i wish there was a way to fix this

and the ones i'll miss the most
are the kids who welcomed yossi into their homes

purest hearts you've ever met
their acceptance (of yossi) my safety net

we're not stuck here if we dont want to be
staying put still better and easier for yossi

when the pros outweigh the cons
but everyone else is gone

as 'normal' as we try to be
still left with our reality

 yossi is our pride, our fame
our life is different, not the same

dreams crumbled in a million pieces
we dont know Hashem's reasons

my little boy i'd never trade
but with the joy also comes pain

deep sadness in my heart and mind
when i see i'm left behind

Sorry I'm Not Sorry

Today a student came to my testing center in Crown Heights from the neighboring Williamsburg. I gave her precise directions over the phone, and after the test I asked her if she had any trouble finding us. When she replied negative, I said "good, i didnt think you would have trouble, i drive that route every day so i know it well enough to give clear directions". The student was curious as to why i came to williamsburg every day so i told her that Yossi goes to a special ed school there. Her response was "I'm Sorry"!

I'm not sure why she is sorry, im certainly not, and i told her so. for one, i'm lucky to be a mom at all, and for the record i have the cutest boy in the entire universe and i made sure to tell her so.

I love being a mom and Yossi is the center of my world. everything revolves around him. No question its hard, its really difficult, stressful, and at times gut wrenching. I'm always busy with something that he needs and now he weighs  50lbs and im struggling to lift him.

But my heart is light because G-d chose me to take care of this precious elevated soul. G-d chose me and i couldn't be more delighted. i remember the moment Yossi was placed in my arms for the first time, his sparkling blue eyes  staring up at me, cutting deep into my soul. i was completely taken by him.  Yossi is one handsome fella and his smile wins over everyone he meets. 

im not sorry at all, for his hugs, his exclamations of joy, and his antics that make me double over in laughter.  i'm not sorry when he  reaches for me and call me 'mom' as i walk by and  when he is so proud of himself for a skill or a trick that he mastered.

I'm not sorry that Yossi loves everyone unconditionally. As for the sensitivity and helping hand that Yossi has brought out in our friends, relatives, and community, well im not sorry for that either.

 im not either sorry that i cannot dwell on this one woman's comments any longer; i'm too busy having a blast with  my fun loving boy!

All in a Name

A name reflects a person's essence. It touches us to our very core. Here's an amazing story about the power of a name:

Meet: Sylina.


Sylina is the newest member of our family.

All of our neighbors know her.

                                                                                                                 
                                                                                                                 She is extremely dedicated.

Yossi gets very excited when he sees Sylina. She is genuine, hard working, and full of love. We are so blessed to have her. She makes our lives so much easier and she has all of our trust. Sylina is an amazing companion for Yossi because she can relate so well. She herself has a daughter with multiple medical and physical conditions.

Since mid December her daughter has been hospitalized for the most part. things took a turn for the worse around April: 3 year old symia was on life support and her condition remaind unchanged for a while.

One night Sylina was standing at her daughter's bedside. in desperation she called out to her by her first name (she never uses her first name) "alexsandria please please open your eyes" and her daughter woke up!

Now its 2 weeks later and  Alexsandria is completely well and she is even back in school. You can bet that from now on we are calling her only by her first name!

out of the woods?

Things have been calm on the home front
Quiet for a while.
but we are not out of the woods yet
not by far

we are deep in  a dense forest
of seizure medications
but we aren't lost among the possibilities
we are back on the beaten path

lower one medicine,
upset the balance
raise another
to make up the difference

0 seizures to 10
and back to none again
from sleepy to alert
from silent to talkative

for now its as good as can be
we're moving forward slowly
i dont see the clearing in the distance
but i know we are back on track

these days are a peek into the future,
i can visualize what the end will look like
as we move slowly down the path
through the woods

Mother's Day

A friend of mine shared an article on facebook entitled  'A letter to the motherless on mother's day', which of course got me thinking about both of my moms.  Now that i'm a mom myself i miss them even more. i wish they were here to share my journey of motherhood with me.

One of mom's favorite sayings was "every day is mother's day", and boy is she right. Every single day we are deeply involved in all aspects of our childrens lives',  from the their basic care to their emotional needs. Now I have a bigger appreciation for everything they went through to have me and raise me (and sometimes i even feel sorry for myself that they arent around to be the grandmothers that they would want to be)

Even though I dont specifically celebrate the official Mother's Day, im sure glad Yossi's school does.  I always knew that beneath all of the differences and challenges, Yossi's understanding is intact. still, i get excited  all over again each time we experience his ever expanding thoughts. Yossi's teacher (of 3 years) also has faith in him.  I'm so grateful that she has given Yossi a voice. I was teary eyed when Yossi's  showed me his Mother's Day project and my heart absolutely melted when Yossi said "I did this."

I think its safe to say that my child is brilliant, and he knows his mother very well.

With This Ring

Today i proctored a room full of married woman. Not one was wearing a wedding ring. This surprised me a little so i asked about it. These woman only wear their rings for Shabbos or festive occasions, lest they be lost, stolen, or ruined (many work in preschools by day). I certainly see the validity in this position.

I do things differently. i  make a point to wear my rings. proudly. EVERY day. Here's why:

It wasn't always this way. sometimes i'd forget, or i couldn't be bothered. Sometimes the rings irritated my fingers, sometimes their giver, annoyed me.

Several years ago i had an 'AHA' moment. i realized that in order for my marriage to thrive i needed to roll up my sleeves and do some work ( and not just  rely on the goodwill of my generous hardworking  husband).

When i wear my rings i remember the promises that these rings represent.
I think about the amazing man that gave me these rings, the man that chose ME (me!?!)
I remember my most important role: the one that needs the most work but often gets the least attention.
When i mess up, my rings remind me what im working for. i dust myself off and keep on going.
When we pass each other for days and weeks on end in a blur of doctors appointments and hospitalizations, the rings remind me of all our happy memories and our hopes for the future.
When im stressed or rushed or angry, i think about all of the qualities that i saw in him, how he still has every single one, and how lucky i am to have him.

seder night

its pesach night again
my husband the seder led
my 7 year old, in bed
lest a seizure rear its head

just him and i, no guests
finish early, more time to rest
its the way i like best
so my patience wont be put to the test

short to the point most meaningful to me
but there is something missing, can you see
convenient but not the way it should be
quite unlike my childhood memory

im always so tired when the seder comes
so happy to celebrate early and  run
but will i ever pass  to my son
all the wonderful things G-d has done?

the warm enchanted feelings of my youth
of late seder nights and the different things we do
yossi i long to share it with you
so you can be excited too

id stay up to the wee hours if needed
to show you how each step proceded
i see the seder differently in adulthood
but i remember the wonder i once had

i sit at the seder: read and recall
miracles that hashem did for one and all
as an adult, im still not in their shoes
but their troubles have more meaning to me
struggles are a reality

i think of all the boundaires in my life
and yearn for G-d to set me free
to split apart the sea of troubles
and let life flow smoothly

Oh My WORD!

This is my mom.
This is delicious!
I  like avodaco.
I want more dessert.
Now its time to bentch.


Above is a snapshot of the (mostly) new words in Yossi's vocabulary. Its been about 6 (crazy hectic) weeks since our Boston adventure and bli ayin hara Yossi is thriving. i always knew that he understood, he shows us in his own way, but seeing his language expand is an exciting new chapter for us and for Yossi. My heart melts every time i hear his voice, And i must admit that Yossi is quite proud of himself as well. he like to try out his voice for hours at a time, usually in middle of the night! From all the years of disuse, Yossi's voice goes hoarse pretty quickly. he is often left with a tiny squeak that sounds like dying toy batteries, but he is not deterred. he has even begun to feed himself again! now if only we could get the toileting back on track!!

bus to yesterday

sitting on a bus
just me and the one i love.
for a day away
5 people to stay
with our big little boy

oh the freedom of traveling light
and talking way into the night
responsibilities out of sight
reconnecting feels right

takes me back to another time and place
where he sat in  the very same space
to our family we were on the way
to announce we were engaged
on the bus to yesterday

in a country  far away
3 girls riding towards a new day
a friendship that would always stay
on the bus to yesterday

a couple brand new
a friendship that grew
new memories soon to go away
on the bus to yesterday

keeping score

Yossi has been back home for 1.5 weeks.

I am definitely keeping score of all the crazy things that happened since he returned:

-our camera cable (for the computer) is lost

-our gps died

-our electric toothbrush died. 

-our car needs a new engine (its only been 5 years) and the dealer is making excuses as to why it should not be covered under warrantee as well as excuses regarding rental car reimbursement 

-ive just about finished catching up at work and im utterly exausted juggling work, the house, and being attentive to my family.      
- our city handicapped parking permit is lost.
- i got  a ticket for double parking in absence of the lost permit    

                                                                                                                                              
 I'm also keeping track of all the wonderful things that happened since we brought yossi back:              - Yossi is healthy and strong.                            
- Yossi is home. And he is over the moon about it.                                                                
-Yossi feels good.                                                
 -Yossi is happy and laughing.                        
 -Yossi babbling and talking.                            
-Yossi has lots of stamina and energy, he can easily practice lots of crawling and make strides towards independent walking-
 -Yossi  is finally eating and drinking for the first time in months ( im thinking growth spurt after losing 4lbs from vomiting so much in the hospital. I don't actually mind the weight loss so much because as yossi gets bigger,its now getting harder to lift him)                                                               -we also have amazing friends who have been our anchor and encouragement who have been checking on us even after we came home.    

                                                                                                                                    
  It would be lovely if  everything was smooth sailing  all of the time but that is simply not realistic . so when the going gets tough, and overwhelming, and i just cant seem to get back on track, i remind myself that Yossi is healthy and i count my many blessings: all the stresses of daily living.

A Tale of 3 cities

1. FLORIDA


After many attempts we finally got medical clearance for yossi to fly! and he stayed well, long enough to actually travel somewhere! school vacation just happened to be at the same time, and we were due to start the ketogenic diet the following week which would render Yossi unable to fly again for a handful of months.  so after 5 1/2 years we boarded a plane to FLORIDA! we've flown with Yossi when he was a baby but the air travel experience is sweeter now that he is old enough to appreciate, and remember it. Florida is always beautiful (had the pleasure of living there for a year) but there is something especially refreshing to visit in the dead of winter, leaving the bitter cold behind.  now i understand why there are so many ardent snow birds!

I was quite nervous about flying with Yossi. i wasn't worried about how he would handle it (he is really easy-going) but i was more concerned about the hassle of security and transporting medicines and adaptive equipment and how we would handle the tight (maneuvering) space on the airplane.
We were fortunate to have a wonderful experience with jetblue airlines, starting from the patient customer service rep, who spent 1.5 hours on the phone with me, picking out the best flight times for us and explaining all of the handicapped accommodations that they offer.

with 6 carry on bags PLUS the car seat and stroller (and 2 checked bags)  we were quite a sight. it took quite some time to unpack loads of medical liquids and get all of our stuff through the xray machine. TSA has a wonderful feature  where you can request extra assistance for the handicapped. we had a TSA agent accompany us through the screening process, and all of the agents were extremely patient, and sensitive to Yossi's needs.  There was also silent boarding at the gate and really pleasant flight crew. they even made sure we were settled on the plane before inviting more passengers to board.  i have never cared about what row i was seated in , but handicapped seating (the first row) makes so much of a difference: more room to lift yossi in and out, not having to shlepp him down the narrow isles, and not having to worry about him kicking the seat of the passenger in front of us.   all of these little things make such a difference as yossi gets older. it could not have gone any smoother and i cannot wait to fly again! i'll definitely use jetblue!

our trip to florida was quite short but the freedom of moving around without a coat was invigorating, as was the sunshine and the pool (yossi's favorite).  we got to visit with many relatives from dov's side: grandma and pop-pop helfner, grandma and grandpa zeichner, aunt marsha and uncle phil, cousin dianne, great aunt rose, and most importantly great-grandma sally, dov's beloved grandmother may she live and be well until 120!  we also got to visit with our favorite auntie shayna, uncle ari and  cousins adam, and shoshana laya. yossi was completely smitten by his little cousin and the two kept holding hands. there is something incredible about kids who have little/no vocab (shoshana laya is 18 months) they are completely intuitive and in tune with each other!
Highlights for yossi included the pool, and pop-pop's new dog-doggie dylan who was very patient with all of Yossi's petting and hugs.



2. NEW YORK

our flight home was delayed several hours and we were greeted late thursday night in new york by extreme wind and frigid temperatures.  friday was a whirlwind of unpacking, laundry, cooking for shabbos.  sunday morning i was right back at work, and sunday afternoon i was packing again, this time for Boston.



3. BOSTON

the long awaited but not so publicized trip to Massachusetts general hospital, had finally arrived. Dov had to work so i spent the week with yossi mostly on my own. im lucky to have good friends though, maddy (who incidentally studies in boston) to split the drive with me, and leora who managed to have time to bring me meals even though she is busy shuttling to her preemie in another hospital.

our trip was to consist of a 48 hour admission to start yossi on the ketogenic diet for seizure control. now that he is off of prednisone, it was safe to try the diet. even though his seizures are currently under control, he is on alot of medicines and it would be healthier for him to reduce some. also his current seizure control has been achieved through valium, which usually only last for a handful of months, so its important to find a more permanent solution.  ketogenic diet is commonly used, and has been very successful in kids with angelmans. the ketogenic diet deprives the body of carbs and sugar and induces a state of ketosis, in which the body burns fat for energy.

well, man plans and g-d laughs:He laughs at me alot! first i had to juggle some problems with the admission paperwork all while making calls to the phamacies and doctors back home to make sure that the special keto formula and the specially mixed medicines would be approoved by insurance and delivered to my house by the time i arrived home.

i was also not prepared for alot of the intricacies of the diet and i wish the dietitian would have prepared me with a step by step rundown of what to expect in the hospital.
well, Yossi hardly had time to take advantage of the wonderful non medical patient services before he got very sick.  it is common for this diet to be a shock to the system which is why it is started in the hospital, but patients usually stabilize within the 48 period as there bodies adjust.  however, my sensitive little boy became dangerously acidotic and hypoglycemic, which is highly unusual. he first began vomiting constantly and then became extremely lethargic and couldnt move or open his eyes. even an iv with bicarbinate (to combat the acidocis) didnt help him recover his levels in the slightest. it was extremely frightening to see a seemingly straightforward diet go wrong. each day our stay was extended and each day dov postponed his bus ticket  until the decision was made on thursday night to stop the diet and put yossi back on his old formula overnight and re-evaluate the next day. by friday morning yossi was feeling better and the hospital decided to discharge us. dov had made it up to boston on thursday, so friday morning we packed up in a hurry and rushed back to new york (had no way to get medicine filled in boston, so we had to make it back home in time for shabbos)


4. HOME AT LAST

with G-D's help we arrived home just one hour before shabbos and raced to unload the car and straighten up the house. we are truly blessed to have amazing friends who prepared shabbos food for us. Yossi is completely back to himself and cannot stop smiling now that he is back home in his familiar surroundings and feeling wonderful. soon its back to the drawing board to follow up on some suggestions and find a new plan to help Yossi's seizures continue to stay under control. for now, its back to the stress of daily living..  we're just grateful to be under our own roof.

dreaming

overtired mamma. makes hands ten times colder than usual.
overtired mamma changes diaper of little boy sleeping deeply.
little boy stays asleep but twists and makes faces when mamma changes him.
i wonder what he is dreaming of when my cold hands touch his skin.
i guess i'll never know.

prednisone, a goodbye party

Goodbye Prednisone Goodbye.
Goobye 5, 10, and 20 (mg tablets)
Goodbye pill cutter and powdery mess
Medicines to take- one less

Goodbye hyper-vigilance
Goodbye multiple hospital visits

Goodbye sensitive immune system
Goodbye broken bones- we wont miss them

Goodbye rapid changes
less worries in public places
Goobye sleepy boy and worried faces

Goodbye backward jumps and baby steps
Goobye rigid schedules and endless stress

Hello strong body
Hello fun
Hello health
Hello sun

Hello to dreams come true
Hello to a healthier you

The Hand of Hashem

Yossi woke up early today (well 7 a.m. is early for him) and got to school at a decent time.
When i pulled up at the school building there was a parking space right in front.
Then i went to the gas station- got a full tank for $35.00 (happy dance!)
Since it was so early i stopped at 770 to daven - incidentally its Rosh Chodesh too!
Its so great to recognize the small things that Hashem does for us!
Its so nice to daven with a heart full of gratitude.
Freshly inspired by the mornings events
Asking for the rest of the day to be just as incredible in a revealed way.

just a regular kid

We always try to treat Yossi like a regular kid. We try to live as normal of a life as possible. Well last week i got my wish- Yossi was home sick  for multiple days with strep and a bacterial infection. oh the irony of it: dealing with seizures and medications and complicated issues on a daily basis and being completely at a loss when it comes to a minor illness! the joy (insert eye roll here) of having your child home sick AFTER a 2 week school holiday, and trying to work with a bored child at your feet. i'll take strep over seizures any day but boy am i glad he is back in school!!