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