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