Garden of memories..

Hello again.
Sammy had a busy day .He started to make more sounds-sometimes its couple of sounds together. He even mumbles when no one is encouraging him. It's a good sign. He enjoyed his shower at the end of the day . In music therapy he was interacting more than before -times completing end of the sentences. Sammy tasted a pineapple first time ,at first he made sour face and then ate slim slices. As per mom nostalgic mood ,I can share some of my memories.
This time it took me way back when I was 5-6 years of age,at my grandmother's garden.She was very special nurturing women,she give me warmth and unconditional love.It brings memories of the old house,unfriendly large dog that was trying ti bite me many times before,wedding picture on the wall and only picture of my grandfather that I never met.Grandma Hinya end up raising 4 children by her self.After my grandpa was killed at the World War Two in 1943,taking his fathers responsibility and role-my Dad then 13 year old,left school and started to work to support his sisters and mom.I loved coming to see my granny,she was always after me trying to feed me 'something',telling me survival stories about war , family hardship and hungry days.I had my special place to hide.
Very large apple tree was my shelter.No one else could climb up as high as I could,not even Daddy's longest ladder could reach me. Sometimes I feel that present' life strokes'-my experience with Sammy's illness takes me back to that apple tree.Where I have learned my first life lesson-that what looks good it's just a cover-what's more important - is what in side!
When picking large ,beautiful apple-it smells good,it looks delicious,but you can never predict if there is a worm inside-until you take a bite!
At this point ,my friends, I will do everything in my power to ensure that-in our garden all apples are warm-free.
Sincerely Sammy and Mom.

Say 'honk'

Hello fans. How is everybody?
Thanks to our friends my computer is up and running now. I just finished planing our spiritual trip to New York for the next month.Usually we pick a day to go without any significant thought behind it.Looking at sequence and days that was picked in the past I realize that this where -milestones. Randomly picked days always turned out to be a 'special days or holidays'-making me believe that we do receive 'help from above' and praying there has been 'recharging' experience. Next month trip is ,no exception. Randomly picked day / thought after our airline tickets was booked/ turn out to be -100 Th day after transplant -what is a big deal from bone marrow transplant point and also May 18Th -the number itself is a 'good luck'. At 100 day mark many things start to change in after bone marrow transplant maintenance .Things like -reduction of some medications that are presently in place,getting clear picture of blood work up, planing next 3 month maintenance -until 6 month mark.So I just keep my eyes open for more positive signs -keep it coming!
We had a very busy day today. Sammy had his weekly appointment at Children's. I have to mention how much care and attention we get from out Stem Cell Doctor and whole team.We feel that we come to family gathering -we feel welcome there.We also had a pleasure to see Sammy's Neurologist ,Genetic and Endocrinology Doctors today. By the time we got back to our hospital we where exhausted. Here is some more interesting changes that I observed recently.
Sammy has a Sponge Bob toy that talks if you press his nose or hand.Lately he has been pressing my nose and I have been saying 'Honk' -just like Sponge Bob does. Today Sammy pressed my nose and I did not say anything.Than he said-'Honk'.This was just great! -reminding me what I have to say.I have been doing this purposely,leaving out last words of well known songs giving him chance to fill in the 'blank'. That is all for today . XOXOSammy and Mom

Wait a minute...

Hello Everyone,
I have had some computer issues ,so I'm blogging' with in the house' /hospital/ computer. Anyway Sammy had some great days and some days when people say 'He is just lazy today!' And we answer -'Sammy is not lazy his is just preserving energy!'.
Dad and mom took Sammy outside for a walk. He like fresh air and how busy it is. There is ,so much to pay attention to.From fancy dogs 'that look like their owners'/Sammy ones said/ to the horse buggy on the street.
Sammy has been more alert and involved with his surroundings . The other day after his medications nurse was trying to look in to her notes what Sammy's schedule is.Well he did not like that.He kept taping on her back for more attention sort of saying 'Wait a minute look at me- I'm right here!' Sammy is making short sounds-like -Ye,Oh, Hi.
Alex /Sammy's dad/ has been walking with Sammy putting Sammy's feet on the top of his and making a steps.This exercise is great Alex thought of it and now doing it every day.I think this brings a desire to walk and I think this boy will try harder now more than ever when he recalles what it feels like to walk again.
We hope our fans and your family's are well and wish all of you 'Fresh Beginnings , as we are coming closer to the end of Passover. Why did I wright 'beginning's?' because I know that everyone will do many 'Good deeds ' in this upcoming new start after Passover.All of us will have little more patience,little more sensitivity toward another person,little more kindness , little more thought,understanding .Stay healthy,keep praying . Sincerely Sammy and Mom

Your connection

Hello everybody. I hope every one is well.
We celebrated first 'Seder' in our synagogue surrounded by friends and family. Every year on this holiday we learn something new ,experiencing Passover Seder our own way. I have to thank our Rebe Notik , Rebatcy Shternie and their children for inviting us and let us be part of this special experience. I could not imagine how much work , special preparation it takes to make this Passover Seder -perfect. Seat next to me was kindly reserved for Sammy with symbolic plate and matzah-next year we will see Sammy siting there and following all the steps Passover Seder with us.
I could not get over the fact -that everything in our life is connected. Comparing recent changes in Sammy's health condition to better and how Passover has so many rules ,but still teaches us that boundaries can be lifted and at the end of the day G-d will perform it's miracle and help you achieve your goal . What an experience.
Sammy is little lazy today. We will go for a walk outside later on ,after his therapy's.Yesterday he had weekly visit and blood work at Children's. It was nice to see our Stem Cell team ,Sammy's Doctor to get their expertize and plan for the future .
XOXO Sammy and Mom.

My piece of mind...

This is a very Special time of the year. Not only because we are enjoying warmer weather and trying to warm up our soles from cold winter month- it's also time to come back to our beginning ,learn 'Passover story' allover again and find something new in it. To me this is time of the year when you are trying to assort all the laws and rules that you live by ,making adjustments for better life in the future.Every year I go back to my childhood memories ,when it was nearly impossible to find 'Matzah' in Kiev -city I was born in.This was the time of the year when my father made special trip to far suburbs to the 'secret' house that was making Matzah. He would be waiting in line for hours taking a number in line ,hiding near by ,so their neighbours would not be suspicious. If such house was found by 'friends' -they would burn it down,so no more Matzah can be produced.That Matzah was very special to us -it made us think about all the obstacles in life we had to go though and wish for freedom of chose and free future.
As a special gift to our hero Sammy ,we brought hand made 'Shmurah Matzah' from our resent trip from NY-they say hand made Matzah is made with a' Mitzvah 'in mind and eating it has a profound effect on your soul.
After that trip I knew in the back of my mind that we should see some positive changes soon.
We did not have to wait very long. Yesterday,our nurse ask Sammy a question: Are you hungry?-Sammy reply was -YE! I did not believe it , I ask to repeat that question again and Sammy's answer was-YE! again! To add to my happy moment Sammy said 'HI' to some one passing by. This is a miracle! It's happening right here ,right now!
May this Passover bring the best in all of us ,may we be rewarded with good health and fortune,may we remember to share our meal with a stranger that will enjoy this Seder in your company instead of being alone. May we do just one more 'good deed' before this holiday begins. Have a great Passover -G-D Bless you ALL and your Family's.
Sincerely , Chaina GelenaZeltser and Hayem Shmuel ben Chaina.

True Inspiration.

Today Mom and Dad came back from NY while Sammy enjoyed grandparents company in the hospital.We went to pray to most spiritual place that We have ever visited -Rebbe Menahem Mendel Schneerson's grave site.This was my third visit- after countless days in the hospital by Sammy's bed site-visit after good new's.I knew this time it -was different,I've changed .
Realizing how much I have grown with my new experience,how much more I need to grow and hope to find out about who I'm and what my mission in life is.When I walked in ,I stop to get connected to Rebbe though his video that is playing at entrance.It was evening of Rebbe's B-day and few days before 'Pesach' begins.I knew he is the one that helped ,continue helping us to get connected to G-D in our prayers to save Sammy. When we visited this place for the first time ,we just learned about illness-Sammy came with us . After we went to the hospital our old friends that love Sammy as their one son- give Sammy $1 bill -'mazel'dike' signed by Rebbe -this was another sign pointing to Rebbe's help in our on going process of recovery.With great appreciation and gratitude I came to visit this spiritual place again.
Video shows Rebbe speaking from his heart ,memorizing all words and never loosing-track of thought on the subject.His unbelievable passion in service to G-D,His connection to people one-on-one, his motivation ,unique way of sharing his thoughts and delivering his point of view with vision for the future.In deep thought I lost track of time it turned out that I was watching this video for 1,5 hour. Is this how natural process of searching for your inner sole begins? Why Sammy never let go his Yellow Duck-pillow that has that Dollar Bill signed by Rebbe in it?I came searching for answers ,but instead had more questions when We left.
Good night .XOXO Sammy and Mom.

Our first Milestone mark!

Dear friends,today we have announcement to make.Today Sammy had an MRI!
When we was getting ready to go to the hospital -we was prepared for the worst. If you think about this chaotic disorder that has poor diagnosis and could change rapidly at any time,logically thinking that first MRI was done nearly 4 month ago and 1 month before such a difficult treatment as chemo -bone marrow transplant -his second MRI -today had to be worse. So in our mind we just wanted to find out 'How much worse it is? How much can we recover ? Does Sammy has a chance ? -All of this questions and more.
You know there is old saying?'Be careful what you wish for?'- We glad we wish for...
Today MRI had -almost no changes -to the first one! This is huge! We can call it our -Milestone mark! We could not believe it! Transplant team at Children's -Wow! Thank you great job,so far.
It gives us reason to believe -that Sammy's full recovery is possible.
Now I have a good reason to believe that HE is here with us -making many people acknowledge that HE IS THE MIGHTY ONE! and miracles is what He does -best!Thank you G-D!
Every one that are praying with us ,this small victory -we will share with ALL of you-Thank you for your support! We hope for future changes and only for better!
Now I can cry my self to sleep -this time with tears of happiness and stronger believe!
Cautiously Happy- Sammy,Family and Friends.

Live in the moment

Hello friends, today is Sunday. Since we've had no therapy today we overslept. It felt so nice that no one was rushing us and we didn't have to follow schedule .So we just let the day-flow.
Why there is always things that needs to be done and as a result you are spreading your self thin?Today was example of 'take it easy'and we liked it! It's not hard to take few minutes a day and just do stuff you like .It could be quiet time alone or being able to do something you don't get to do it often. So considering all the stress and pool of feelings and emotions that I go though being in the hospital with Sammy ,I've decided to take and enjoy a 'moment' when it comes and live everything else for later.
Sammy was very silly today.First he was trying to catch and pull my hair, than he decided to bit me.Earlier today he was goofing around with his medications making nurse believe that that he got it and then spiting it all out .It seem that slowly but surely Sammy is coming back .He has been listening to my cell phone when someone calls and seems to recognize family members when spoken to ,of course its only for few seconds but I will take that.

I would be interested to find out -What is your way of handling stress in your life ?
Are you able to live 'in the moment'? Do you recognize importance of being able to take a break or you just keep going and going ,like 'energizer bunny'?
Sammy and Mom.

Up close and personal

Hello Fans. No changes just another silly story.

Since young age Sammy has always been affectionate .He loved giving hugs and kisses . When he started first grade I was afraid that we will be to shy ,but he didn't care if anyone will called him-' mama's boy.'
I missed that. Sammy forgot how to hug . I decided to teach him. First couple of days I just held him tight for few seconds -he did not push me away.It's seems that he was listening to my heart beat?! Is it possible ?
Then I started to look in his eyes while another arm was wrapped around him-he didn't mined.
Now when I say 'Sammy give me a hug' -he knows that I will put his hands on my shoulders and give him a gentle squeeze -he just laughs and is good enough for me.I hope one day -he can do it all by him self again.I often wonder -'How much does he remember from his life before transplant? His room? Schoolmates? Friends? Favorite game?
Tomorrow will be another day hopefully full of great news but today, we just relaxing and taken it easy .


Sincerely Sammy and Mom

Born to exceed.

You were born to exceed -expectations an such
It was easy for you -it was never too much
You were always ahead-always did what was told,
Your first word was at 6 month-first step at 9 month old.

Don't be scared of this illness!-We have faith and so glad,
That you control your future and your future is just ahead!
All the odds of this challenge you will soon overcome!
What's the odds?!-it's statistics-they don't know -you my son!

With family near you-You'll recover just in time!
I told you before-No child will be left behind of my!
You falling -we will catch you-You fly -we'll cheer for more,
Unconditional love-it is bigger than ever before.

You will try ones again!-Just like bird you will fly
Widely spreading your wings -ones again in the sky
You were born to exceed-expectations and such,
IT IS easy for you-IT IS never too much.

G.Zeltser - 04/10/08.

Two month since transplant

Few days ago we had visitors.For the first time Sammy's G-d father with G-d mother together came to visit. Both had to wear face mask .I was curious to find our if Sammy will recognize any one of them .As soon as his G-d father said something Sammy knew right away who this was.

Sammy use to be able to use computer with a great knowledge at 6 years old.He was able to search for his favorite objects like spiders ,cicadas and other insects. Ones desirable information was found -he would read that article and move on to another.His curiosity and ability to absorb information was endless.Since his new tech-speech lesions began it has brought some memory's back .

Recently Sammy was re-introduced to computer again,my most amazing observation was that- he started to smile and seem to be familiar with keyboard ,he look like he was trying to remember something.Since his attention span is very short ,he quickly got disturbed and was not interested to continue any longer.

We are trying to find out every bit of information about how much Sammy remembers and how much he is able to learn.What is his maximum potential ?What can we do to help?Does he get tiered and unable to continue -rather than not able to? We have many questions and not enough explanation were he is now. We will be wating Sammy,take your time.

Have a great day ,Sincerely Sammy and mom.

Let's tango!

Hello everybody. Another sunny day.
Have I ever mentioned that the view from our hospital room window is breath taking.I see lake Michigan every day.I'm able just for a few minutes a day take my mind off our life challenges.
Sammy on the other hand having new sessions on tech floor of the building. This are highly trained professionals that is assessing Sammy's ability's to communicate .Many options will be considered.From pointing to pictures to using special computer programs.It is amazing how many options there is to communicate in case someone is unable to speak.We have to explore all possibility's take all the steps to make communication easy.I don't ever want to look back and say that some opportunity was missed.
Have I ever told you that we tango?
Every time I have to transfer Sammy from bed to his wheelchair and back I stand him on his feet w/support. I put his arm around my fading waist and take another hand .I tell him that we tango-while I shift his body weight from one side to another. What is the benefits of this exercise? First I help him feel his weight standing tall,second I get a nice hug,third he likes doing it.Sammy laughs and after I sit him on the edge of the bed ,so he can try to sit up all by him self. We do this few times a day and as son as I say 'Let's tango ' he knows what comes after.
Have a nice evening ,XOXO Sammy and Mom.

Research today-cure tomorrow..

Hello fans. I hope everybody enjoyed warm couple of days.It feels like Spring again.
Some of you are curious how do I pick a topic of my blogs. Honestly just like everyone of you ,as soon as I open my eyes in the morning my thought are going crazy.It seem like the are trying to race each other and which ever stays with me the longest and makes me think harder -will get published. Today my subject is - research. Thinking about how many rare disorders out there and in order to help people in the future- someone has to enter in to trials and be part of research projects.If not us than who?Have you ever ask your self a question-How far ahead medicine is today from previous year or 5 years ?-many procedures and medications was not available before and because of resent study became available now. Each time study is completed there will be new information shared with other medical teams that are working in the same field it becomes a database for the future. Because 'database' was available to us through Internet we where able to- analyze and view many researched cases of Sammy's illness in details and make decision if we will subject Sammy to transplant.That's why we had no problem being part of new study.Since in Sammy's case there is no known medications available now,we hope for more and more research come forward in the near future.
As per our Sammy-boy..When I came back to the hospital from home,grandma said that it's apparent now that Sammy missed you. He was sad all day yesterday and when he saw you this morning - he started to laugh and his face expression said-Finally she is here!. I made some of Sammy's favorite dishes and let him pick.He picked 'Rice and Ronni' .He like it so much that after plate was empty he started to deep on tho his bib-pocket were extra food that falls from his mouth lands.We have a new night lamp now.Since room is dark at night and regular lite is to disturbing -I found lamp that has constant movement of colorful fishes swimming around,just like real aquarium.Sammy watched them swim and fall to sleep faster.
That is all for today my friends .Have an opinion or wishes? Please live your comment for us.
Thank you Sammy and Mom.

Sunday ...

Hello everybody. Today Sammy is relaxing and free of all therapies. His Grandparents spending entire weekend with him in the hospital and spoiling him rotten. Mom went home to reunite with the rest of the family.
While at home, in the morning I decided to put some make up on and.... WOW! I forgot that one side of my makeup mirror is 5x magnifying. Who is this lady starring at me from that 5x magnified mirror? and what happened with my face? At first my reaction was -Wow! and then-Yak!
Many new lines around eyes soon to be wrinkles, many new gray hair that came from no wear,
dark circles around eyes and some newly developed freckles! All of this things was not part of my appearance before. I was in the deep though most of my morning and came up with a the plan:
1.Make appointment to the beauty salon .
2.Explore possibilities and get some new -wonder-product from cosmetic counter
3. Make sure that ordered vitamins are used.
4.Go out with hobby and get a drink.
I think this will do it!
Otherwise life is good. As we watching Sammy's awakening, I pray with every improvement to get more.If you ask for a miracle and truly believe that it will happen -your wish will be granted !This is the month to see our Sammy recovered against all the odds.We are the witnesses of it.
May G-d be with us and give Sammy strength to fully recover and have a full quality life in near future. Baruh Hashem.
Enjoy beautiful weather, Sammy and Mom.

True Friends?

Hello everybody.
Today's blog will reveal some of my feelings toward friendship issues. I have thought about this every day -since first day in the hospital. It has been several weeks and month since me and my husband heard from some 'Friends' .You really never know -how true they are?- until some challenge or difficulty in your life arises. We waited all this time to get at least a phone call from some people we knew - who was 'friends' with us for many years before.It,so true that some people don't know what too say or how to act around us.Every one of those people know my cell number-it's still the same. We have given plenty of time ,benefit of a doubt and now after this many month in the hospital - I can tell you-they simply don't care! They want nothing to do with us.Is it denial? Is it just blindness?Or insensitivity?I think it's all of the above! To me it's a very hard to understand position.Closing your eyes and heart on a little boy that ,was part of every gathering and B-day party of you kids ?! I will finish this subject that was bothering me for many weeks on a lighter note. We let those people go by who they really are ! We wish them all the best! But what we gained is true picture 'Who is Who' and countless new supporters that are with us every day now.
On the other hand - some other old friends that have been BIG PART OF OUR LIVES-became like brothers and sisters to me . This are incredible people - who we love! Always there for us every step out of our way ,ready to come to our rescue at any moment -24/7 ,constantly looking for more ways to improve our life and literally getting involved and realizing from the beginning that we can't do it alone .We welcome,so many New family's that reached out to us ! They did not know us before and became great supporters for Sammy and family .They comfort us when we are down,they cheer for us when we make a progress -this are the people that will always find support in me and my husband at any time and ANY point of their life's. That's it for now.
I'm glad I was able to get this 'cat out of the bag'! And I thank you for reading this Blog ! Please let me know what your thoughts are? Do I have a right to judge?
Truly yours Sammy and Mom.

Laugh Sammy,laugh.

Hi fans. We hope that you are well and staying tuned to our "station".
I just have to wrigt about what happens every day in the morning and it- makes my day!
Every morning our routine takes about 60-90 minutes to complete.I usually have to 'be prepared' and get enough choices to choose from because our hero is a very picky eater. He will try new things ,but sometimes will take only one bite and then moves on to other plate.
Creme of wheat has been his favorite so far and sometimes cereal. After he decided what is for breakfast today- he will munch on it for a while and then... When he is full and doesn't want to eat anymore he holds mouth full of food -refusing to spit it out, then- Sammy takes deep breath and this huge sneeze is cumming at you.
Your hair,clothing ,table near, floors- are covered in cream of wheat! Then I would say -that I like him to eat this food,I don't like to wear it all day!He laughs so hard -he thinks that I'm so,
funny. This are the moments I live for.There is my Sammy-I like to see more of -my Sammy I know-kind, smart, overactive, quick learner -he was always ahead of his kindergarten class in reading ,math .He has a great sense of humor and unique ,mature way of expressing him self. When he was about 3 years old he ask me ones-Mom- You always saying -'they' say,'they' do -who is 'they'? and why they have such an opinion on everything?
That my friends,what I'm looking for to see how much is there of Sammy I know? -in Sammy I see now.
This new coming up month is very important for us.It's month of healing -illness . We need all the prayers we can get ,so please join us -Sammy's full Hebrew name is:
Hayem Shmuel Ben Chaina. May Hashem show his miracle work and make Sammy's recovery -complete and speedy. G-d Bless you all stay well-stay healthy!
Sincerely ,Sammy and Mom

Split personality..

Hi everybody. Today I'm absolutely sure what will be up for discussion. Please do let me know how you feel about this subject ,because I need your feed back.
I just was thinking about how consumed I am with this hospital deal. You know I had mentioned before that I missed my work. I have been part of my retail store for 13 years . I miss my customers , co-workers, new merchandise ,my boss and just walking in the store every morning when doors are still closed for business.I have been using many web sides and every new magazine to stay in touch with whats new for spring/summer season.I love selling ,understand customers needs and making a great sale- it's an art ! I'm very motivated by making numbers,goals ,being part of a contest it's challenging and challenges -is' what I'm best at'
/ that's what one of my girlfriends said / .Working on commission- puts you at the beginning of the battle field every day all over again - there is no wining yesterday ,today is a new day!I miss being part of that energy . It feels like you are split right at the middle .Part of me wants to be with Sammy every second of the day and night,BUT my second part is ready to go back to work.Is it normal? What can I say- I have a split personality. I like to think that is OK to spent some time working, as long as things are scheduled and settled at home .
I feel that Sammy will benefit from that great deal. In one point we will have to separate and our big boy-Sammy should move on and interact with other people too just for few days a week.
I do think that when home routine is consistent and time is right- it will be OK for parents to have little time for themselves. Make 1 nigh a week-parents night!We will go out just two of us to discuss issues that can't be part of our family dinner conversation and just repair things that have been neglected in our relationship for 3 long month. As time goes by and Sammy getting better -we will start planing our Disney World Vacation. We would hope to bring all our kids alone with us and possibly grandparents, but this is in the future plans.What are your future plans?What is your opinion on this view? Sincerely Sammy and Mom

Mirrored emotions....

Hi Friends,
Today I had a hard time to pick my topic of conversation.As soon as I open my eye's every morning,thoughts and things take over.It gets to the point that I have to say to my self -relax-everything is going to be OK! One of my on going project is look in to myself. Realizing that life had shifted and we need to make allot of room to make Sammy comfortable.It will take some time to adjust when we go back home.I'm not waiting to get clues or recommendations .I'm the one that has to made some decisions. Today I ordered a special needs chair that will provide maximum comfort while transporting Sammy to and from his treatments 5 days a week . How do I know it works? We had a chance to try it out for few days here.It's light,foldable,has a great stroller look to it .Also getting that chair now will benefit us by not only having it at you disposal at any time -it has to be adjusted by professional and we have a great chance to ask for 'perfect set up' here. I'm exploring possibilities for 1 more mobility jogging looking stroller for long walks in the park or outside. There are many-many different gadgets and systems and car seat I have to think about. When we arrived to Children's Memorial Sammy was walking and even running by him self-now things changed-but not for long!
Today our big boy Sammy was sitting in lotus position for about5 minutes ! Yep! You go Sammy!
There's been some further improvements with other therapy's too.When I change Sammy's shirt I live it half way done -it drives him crazy! He has to reach out o get that shirt off his head. Instead of taking All work upon my self I like to share it with Sammy until it becomes routine.
As per my emotional couple of days earlier I've made a decision .I will not ,let this happened again!
No one can take my hope, believe and prayers away from me!We deserve to have better quality of life!There is,so much positive ahead I want to be a witness-participant of G-D's miracle
It effected Sammy's mood and his day -big time. I finally understand that we are just like one unit -my feelings is his feelings.He mirrors me and became super sensitive to my emotional state and how things are going with me.We got our strength back !I'm doing much better now!
XOXO Sammy &mom

Our trane is going....

Hello friends, I have been recuperating from a reality check from our resent meeting with doctors. I was told to look in to another way of communicating with Sammy in the future do to his disorder progress and high chance of not being able to talk or walk ever again. From very beginning when we decided to subject Sammy to bone marrow transplant we knew that doctors promised no guaranties,but this was the only known chance to safe his life in the event that disorder is not progressing. We are faced with countless 'What if" and 'May be'. Only G-d knows what is going to happen in the future.In the mean while we are leaving our lives like on volcano that can irrupted at any minute. Not only illness challenges is a concern,the emotional state of adults involved in this situation is a roller coaster.It comforting to know that Sammy not in pain now.He is taking day at the time .If he has a bad day he is sad ,if a good day he smiles.It is very different with us adults.That baggage that we carry in the back of us-knowledge and experience is not getting any smaller in fact its dragging us down. Like our real life experience raising our older kids ,seeing them grow up to be beautiful young people.High school graduation,collage, is just a feeling of completing some goals you set for your self as parent when baby is born .You see them taking their adult steps -that is just an extraordinary experience that we live for.
My biggest wish to see Sammy do those thing is very real. But life train is going forward without any consent or let you be in control or even use brakes when necessary.It stops at random stops and speed limit is unknown .Unfortunately it feels that you are just a piece of a puzzle and it will be put together whether you are ready or not.As my emotions taking the best of me ,Sammy is still making some progress.Yesterday he reached out an took his hat off.Today he tap my back for attention and even said something what appears to be 'Hi'.
So let's pray ,hope that this train is going in direction that We got our tickets for!
Sincerely Sammy and Mom.