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