Capitan-Sam

Yesterday -Sammy turned-9.
Something we thought could never happen.He has been fighting with this ugly illness for long 2 years-he is the inspiration and the teacher for all of us.
We picked this place for celebration for few reasons. There we celebrated Sammy's 1st years old and Eva's 5.We even got same waitress as we had 8 years ago-I could not believe it!
This room is very Nautical-upside down boats and many other items of fishing around.
I found an outfit that Sammy will look his best . He had nothing less than 'Navy Captain' suit on.
He has been always a handsome kid anyway,but this made me think of how much more we should see Sammy accomplish in the future.I believe that miracle comes to people who believe in it-and we do! If there is 1 in the Million chances to fully recover from this condition -it would be Sammy.
Sammy knew that it was his celebration -many new noises,many old voices -I could tell he remembers.His Cake was HUGE! It was a Pirate theme. In fact that Captains of the ship have to fight with Pirates to survive .All essentials present ,Friends and Family and many more who could not make it surround it us in our Celebration.
Sammy was exhausted after his party-he slept for 4 hours straight.
G-d Bless our Angel Sammy -what a Special Boy we have what a Blessing to be able to hug and kiss him every day.
Sincerely Sammy and Family

Magical

Hi Friends.Many of you know this lately I don't wright too often. Sometimes its just not much to share. But this weekend was -Magical.
On Friday we celebrated Eva's BatMiztva,when we welcomed her to a women hood.
The reception was truly Magical.Many guests came up and told me it was just like from fairytale.
It lasted 2 hours,but you felled like you where at very different place-like in the dream.
Not only Eva Chava was super confident,she also conducted that ceremony with an unbelievable strength for 12 years old that evening.With huge help of Notik Family this event turned out to be true celebration ,Chava Notik had kindly volunteer her time to prep Eva Chava for several weeks,and decorations of the celebration room was tastefully done by Rebazin Notik-Thank you!
The morning started early form me.I wanted to make something 'Special' for my dear Eva.
I picked up 180 roses and headed to Temple to make 2 flower arrangements as center pieces.What can I say -they turned out just beautiful,but first G-d had to test me.My arrangement fell on the floor 2 times before I was able to put it together.With a lock of much time,I continue with the task like nothing happened.
Sammy have had great few weeks.He looks great,stable thank's to meds and carifull skilled home care.
Sincerely Sammy and MOM

unbreakable

Hi Friends,
Today was very quite day.Sammy was sad. He did not respond to talk or touch.It looked like he was in such deep thought. I wonder if he can remember old days? If he remember our holidays or their meaning? All of this is a mystery and it looks like I can't get straight answer to it and its OK,life is full of unanswered puzzles. As we approaching Yom Kippur ,I often think of people that we met in the past year.I believe that G-d is bringing people together for reason and it would be our job to get positive/hopefully/or negative experience out of it either way you get to learn something or someone new. I have been working very hard to change my way of thinking about someone or situation. I try not to judge .Only if you are in that persons shoe and walk a mile -you will have a slightest idea what they have been dealing with.I don't talk about my home life at work if you see me there you will never guess what has been happening home.
The only thing that gives me up is.... One of my acquittance said 'I know this you have very sad eyes even when you smile... Well somethings I can't help-they are obvious.
Preparing for Eva's Bat Mitzvah and Sammy's Miracle B-Day we try very hard to celebrate life!
That is what we always believe in and always teach our kids to handle problems one at the time as they come and get help when needed if you part of the family we are here for you not to forget friends too.Together we are unbreakable-apart we are most vulnerable !
Stay strong Comrades,we still have a fight ahead its called -surviving .
Sincerely Sammy and Mom

Survival Mode

Hi everyone.I know ,I have not updated my blog for while.
Sometimes there is nothing to write.I guess I don't want to wright about negative stuff.
When you in' survival mode' you just running on your last strength trying to re-charge one day at the time. This feeling have been part of our life lately.That is when 'Helping hand' became most important.There has been many people who has been part of our life in the past 2 years .Some are new friends ,some are old.This organization and our Friend Sylvia who has been watching our family closely had reached out just on time before we could fall apart and break beyond repair. In the past few weeks 'Chai Lifeline' have been our savior and shelter giving us an opportunity to move ahead. Our Rosh Hashanna meal came from 'Chai Lifeline' too.Thank you.
Sammy is somewhat stable. He continues to have vomiting problems .He has some good days too.Loves being part of the family he enjoys listening conversation at the table feeling included.
He feels every wave and bump we go through ,he is very sensitive even in this stage.
Cherishing every day we can kiss and hug him ,we understand that this gift might be taken away from us one day. Sometimes a friend will visit and say -I had no idea how much time and work Sammy's care require , for us this is just a small part of a pot of duty and scope of work every day . We are happy to have it.
We wish every one very Happy and Healthy New Year.
Sincerely Sammy and Mom

Miztvah

Hi All,
Sometimes I can't get my self to write anything.It happen again . It not that I have no topic to wright about,it's just difficult to concentrate .
As we preparing for Eva Chava's Bat Mitzvah we must move fast.Normally it takes 1 year to plan,not in our case. It was decided on in July and it's happening in October.
Service is the main part where we will officially welcome Eva Chava to become a young lady.
Can't wait. We decided on special touches in this special service,like personalized kipah. Just like the color in her dress. We ordered it from'Kool Kipah.com' -they were the only ones that had that specific color we needed.After placing an order ,I was waiting for e-mail with invoice .
When I call to pay , they refuse to charge us for our order. I could not believe it,what a wonderful Mitzvah just in time for upcoming New Year. Thank you,we will always remember it. Sammy's B-day is coming up too.His Hebrew B-day is 25Th of September . His Birth Day is in the beginning of next month. It's very exiting and chaotic .
Just met another Mom on line,her 8 years old son that has same disorder as Sammy has few weeks to live. Only parent that is about to loose their child could understand the devastation and so very unnatural event they have to prep them self's for.If normal person would read content of this e-mails they would have their hair stand up on their head. Unfortunately ,I'm not alone in this. Why don't I feel relieve? Why this fact does not make me feel better ?
They are in the same 'Boat' . I can share my thoughts and may be,just maybe make some one else feel better .I hope I can find right words and strength to reach out to some one else ,it does make me fell that I have something left to offer to another person.
Sincerely Sammy and Gelena

house

Hi Friends,
It seems that we have been in this house for ever.Just moved 2 weeks ago,but the feeling of a 'Home' not leaving us. We can relax,sleep, do our chores in much better atmosphere than before.
You would think that its only place to live? Not really. Only now we can look back and see how much changed since we have been in our old house.The memories of the other place is not great.
Moving forward with old bills tagged alone to new ones we will be able to get through this too.
In the big picture well being of your loved ones is whats important .
Sammy have had rough week . He is very sad.
When our friends visit last weekend, I put Sammy in his wheelchair and whiled him out side .
He was ,so happy to be part of loud noises and some what familiar voices.
It became clear that he is in there and he needs as much interaction as we do.
His schedule remains the same. He have his walks outside every day and reading time with his best friend and teacher Laura ,who continues to read to him 5 days a week -no matter what.
Its just incredible how many wonderful people we have had pleasure to meet in the past 2 years.
If not for their support ,we would have allot harder time to go through our journey.
Sincerely Sammy and Mom

Hitting rock bottom...

Hi Friends,
Last week we hit rock bottom. Meaning , we need a plan. It happened that we give all the attention to our little Angel leaving everything else aside.It's clear that we have to figure out a way to get our life back on track . As far as I'm concern -its all will work out.
I guess I blind believe that we will prevail, that it takes time and ALL of our strength to get through every bump and moment of what ever it is we were destined to get through.
Main job we have now is to keep our family together from falling apart, sometimes realizing things that must change,pointing out things needed shifting and actually turning it around.
All this is important ,but not as important as Sammy's care. He will always be center of our concern,attention,affords -we can not have it any other way.Like my girls say 'Its family..' if anyone of us needs help ALL must rise and help with what ever it is possible.
Keep positive ,there is always a way or few out of difficult situation ,use your positive energy wisely.
Sammy and Mom

A Joke

Hi All,
Mom is finally speaking again. 'Too bad'-said my husband. He said you were a 'dream wife' during this few days. You cook,clean and never said a word.....
Our family always jokes.No matter what happens -humor is very important part of our life. You can make a point by joking without spelling it out. I just have to share this funny episode the other day:
At work ,this elderly women browse through our merchandise and finally said:
-There is NOTHING here that knocks my socks OFF!
-Well,/I said/ Ma'am, you don't have any socks ON?!.....

It made my day. It always makes it ease if you can switch your attention to something else -just try to make best out of it.
When people smile -there is a special energy around them-it opens peoples hearts .All of a sudden -you become friendly with person you just met 5 minutes ago...

Sammy . He is well. Sammy had few very good days! We needed that. He smiled,made more noise than usual. I have to give full credit to his nurse -that takes such a good care of Sammy while I work! She is really the best-we are lucky to have her .We also know this that he grew ,we were just trying to guess how much he weights?! This will be our task for this weekend.

I hope every one is well.
XOXO Sammy and Mom

Missing Sammy....

Hi Friends,
Today I was send home sick with laryngitis.I can't talk on the phone at all,so blog ,my e-mail
is only communication for now. I guess I can get a taste of Sammy's inability to speak anymore.Let me tell you-it is very difficult to hear everything and not being able to reply. G-d is working mysterious ways why laryngitis?
In the past few days I met another amazing women. We just talk.She had a very quite but sophisticated look,very intelligent and reserved. She was able to listen without interrupting ,something I never being able to do. I guess ,there is allot to learn .There is always room for learning,improving ,sharing.
Sammy . Sammy has been very tired lately. He is ,so beautiful. He lives for hugs and kisses,when I walk in he knows right away . What a special treasure Sammy is.
Small,beautiful ,crystal clear -this is the how many treasures come to our life.
I can't come close ,just afraid to pass this awful cold to him.
If any one only knew how much we missed our Sammy....His laugh,his smart jokes,voice,hugs...
Our new place is very peaceful. We feel great here. Very good energy,old oak trees in the back yard . I can relax here after every one is sleeping in the house.
Other wise ,no news is a good news .

something,somehow,someone......

Hi ALL,
SO glad last week is over. Its seems just we needed the most we were channelled to G-d 'path ' for help.Miracle did happen and Sammy will have home nurse to care for him while I'm working for 10 weeks for now. It was magical, something told me to call again,somehow I got to different extension ,someone call for us, the ball was rolling and the chain reaction put together right people to advocate for Sammy and Family. It was like my prayer was answered .
Sammy have had his share of though days .The vomiting is still a problem,seems that some function is not working as well as before.Is it fixable?
Sammy feels every emotion and understands what is going on .Last week was difficult for all of us .
Settling in our old-new place.Its is wheelchair accessible throughout. Sammy have used his new bathing chair and like his shower very much.The porch is on the same level,so when walk is a problem we can wheel him out for a fresh air. This home feels great ,our old house holds sad moments and bad vibes for some reason it's easy to breath here.
Our friends had visited all ready. Its is not what is home looks like or what size it is-its who you share it with. We love to cook and have people over and nothing can change that.
Sincerely Sammy and Mom