New Poem

Hi ALL.We are OK.Sammy is doing well. I cant sleep,so had came up with another poem .
I hope you like it.

AFTER FEW DRINKS LAST NIGHT , AT THE BAR
I MET THIS 'HOT BLOND" LOOKING LIKE MOVIE STAR

NEXT MORNING "O' God !,SHE WAS GONE..WHAT A SHAME,
I'm TELLING YOU GUYS I'LL BE NEVER THE SAME

LEAVING BEHIND FEW THINGS ON SIDE TABLE
I HAD NO ONE TO BLAME THEY ALL HAD 'NEIMAN'S LABLE'

I FOUND:FAKE LASHES,SPAX TIGHTS,CARTIER
CLEAVAGE ENHANCEMENT, LABOUTIN'S ,BUSTIER
HER BLOND WIG,FAKE TEETH,I WAS YELLING 'NO WAY!'
IF ALL OF THIS LEFT HERE THAN WHAT WALKED AWAY??????

MY FRIENDS MY ADVISE TO YOU AFTER LAST NIGHT,
BE CAREFUL CHOOSING YOUR GIRL ON THE SIDE

JUST ASK HER BEFORE SHE IS FALLING APART
THIS ONE SIMPLE QUESTION -IF SHE OWNS NEIMAN'S CARD?

THEY MUST SELL ENHANCEMENTS BY DOZEN
it's JUST WRONG -I CAN'T TAKE ANYMORE!!!
AFTER FEW DRINKS I WAS ASKING MY COUSIN
WHAT ELSE CAN THEY SELL AT THAT STORE????

15 years

Hi All,
We just celebrated our 15 years anniversary. Both of made of honors was there. Of course at home ,we welcome our close friends and family.
It was magical. Ones again realizing that without our family and friends we would not be able to make it ,so far. Just looking around us we ones again said how lucky are we to have such an incredible people around us.
We really had fun , many of our friend we know for at least 15 years . Their weddings around same time and our kids born and raised together. It was like a balm on our bleeding soul.
Sammy enjoyed attention ,it seem he recognized people voices and was very alert . Great evening ,allot of love,precious memories,laughter ones again entered our home-this is what we love and could not have it any other way. Life is short,we must enjoy those rare moments of happiness.
Our daughters was ,so helpful.They helped out and made our party easy to handle -Thank you ..
Tomorrow we off to few days off,I must catch on my sleep between home,work,Sammy I feel tired.
Have a great Thanksgiving ,use this opportunity to gather your Family together and tell them how much they all mean to you..
Sincerely Sammy and Mom

No turkey for me.......

Hi all,Hope everyone is Good.
Sammy have had strong 2 weeks. He loves bath, rubs,hugs .I have few extra days home this week/no one else can take care of Sammy/ .We have all different activities during the day.I try to include him in everything I do.I can only imagine how tired he is of laying in bed all day long other than go for a walk with grandpa.We talk about everything ,I even get a smile when I tell him a joke or talk about news. Its just unbelievable how much love and understanding you can get from this boy-you would think if he cant talk he can't express him self? Wrong,he shows it in many other ways.Last night I just crawled in to his bed and fell to sleep,when I walk up someone said that we where both snoring.
Fight for Sammy's home care is on. It will not go away! I'm determined to make this right.Family like ours with terminally ill child should not fall through the cracks like this-we are at our most difficult stage at this point and need assistance taking care of Sammy-we will get it one way or another.All I want is be able to continue working -4 days a week to support my family.
Up coming Thanksgiving is not my favorite holiday anymore. 2 years ago just 1 day after Thanksgiving we got a bad news ,so this association will always be with me.

Sincerely Sammy and Mom

Lullaby

Hi All,
We continue with our persistent mission to have adequate help for Sammy while Mom works.
Although we had exhausted many channels there is always another one . We even got inquiry from local TV station to do a story on Sammy ,but I just think it would be our last resort- its only fare to give enough time to respond for those that we contacted in the last week .Nothing happens overnight ,so we will wait little longer . Oh,wait I'll take that back -what- does happens overnight is we lost our nurse just in one day-that happens very fast! Than we are on our own ,ones again fighting.
I can wright a whole column about insurance dropping us instead of being grandfathered and system failing ,but who will benefit ? Instead I decided to save my energy for positive and try to gather most sufficient and proactive people and information to work to our benefit.
Sammy is doing OK. Just last night ,we got a scare with his hard breathing pattern. He had just slight low grade fewer. I give him nice rub and hug and whispered some lullaby to his ear and in the morning no fewer -he recovered .I wish I can do same with his illness.G-d wheeling....
Sincerely Sammy and Mom

seeds of hope

Hi Friends,
What a week. One of the most challenging weeks .
There is so much going on .The good news is that Sammy is OK. Just when I thought we finally settled with our schedule and help wile I work ,we lost our coverage for nursing. Ones again like a bull on the red I had to make a plan. Contacting new and old sources I planted seeds of hope and in the next few weeks we should see what plant will start growing.
What amazes me the most is that' system' is failing time after time one of the most vulnerable group of patience -terminally ill kids. You would think it should be easy to get help for Sammy ? The main problem is that program pays nurses 33% less in Lake county VS Cook!After getting a denial for equal pay increase we are moving on to higher sources, nerveless I could not understand why if we live 3 mi south we would be covered with nursing assistance without a problem.
What's now? do we have to move? No one wants to take pay cut ,but we do live in Lake county and can't move do to the fact that it will be very bad for Sammy .
Ones again -there is NO situation without resolution.We'll continue fighting for Sammy for my ability to work . This are most natural rights that most of us had before and now have to fight for.
Just imagine one morning you wake up ,you are faced with real question who will take care of Sammy with all medical complications and countless drugs he must take during course of the day?Medical staff is the only qualify help Sammy can have.
Many questions not much answers,that is what parents are for to fight for their children well being no matter in what condition they are.
Sammy and MOM

Everything is 'Peachy'

Hi Friends,
Hope every one is well.
As a tradition we are facing obstacle after obstacle for the past 2 years. This past week is not exception. We just learned that Sammy will have no nurse coverage for most days mom works .
Was I upset-of Course ! Was it surprise to me that something about to surface ?-No not really.
Is it fare to Sammy or us? But life goes on-we must find a way to get ahead .
I could never say we complain,but it getting to be annoying .I always ask my self a question -whatever comes up -Can it be fix? Can we do something about it? If the answer is Yes-we are in good shape. We will have to figure out how to care for Sammy at home with 2 days a week nurse coverage/besides next week we have 0 coverage/
The main challenge is to keep my job.
Sammy is doing fine. Since you can't even tell that this boy is sick-if you would see him,our last hospice doctors visit was great.The fact that Sammy has fevers and vomiting problems is shifting to the second row-I guess if you can't see it -its not a problem?!
I learned from Sammy ,just move on and that is what we intend to do after we can figure out how we can keep Sammy happy and Mom at her job.
Otherwise everything is 'Peachy'.
Sincerely Mom and Sammy

ID

Hi All.
It has been tough few weeks. I was sick with a flu like symptoms-have not have it for 2 years .
The fact that it ,so contagious it tipped the 'careful' scale to frantic caution for me.
It blows my mind that just a simple cold can change everything for Sammy.
It happened that some wear in the same time my thoughts overwhelmed me.All of a sudden I started to look for my identity . One day I realized that things that I had a great handle on before has shifted.I recognized many changes in my life that have happened during this long 2 years.
Honestly ,I don't even know who I am anymore.Questions like -what would make me happy ?besides of course for Sammy get better . It sounds like its time for me to do some new soul searching .The fact that if I'm not happy with things now -makes me think of the ways to switch it back to where they were before. My bubble is my comfort zone- anything outside is not for now.
Sammy ,has been OK.Some days disconected ,some days very alert.
He is such important person in all of our life's and the fact that we love him more than our life is going without saying.Vomiting became frequent and consistent he is able to deal with it with nurces and my help ,although it takes energy away from him for hours after.
Sorry for not updating my blog as much as before.Hope everyone is well.
Sincerely Sammy and Mom.

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