Shirat Devorah

[shirat-devorah]

BEATING THE ODDS

Six years with ALS today. I beat the odds. Never in a million years could I have ever imagined my life would turn out this way. But God had a plan for me. I was diagnosed on February 13,  the day before valentines day,  coincidental?  Ever since I found out that I had ALS my life has been filled with LOVE! I am truly blessed.

Every day I  bring people to do mitzvot(good deeds). Thank you GOD for this honor.

I have wonderful friends who visit weekly. We laugh so much together.  My friends are young and old.

There are the college kids who drive my son home from school.

The neighbors who come over Friday night.

My Shabbat group has become family,  Saddle Ridge women bonding over everything.

The Wednesday night tehillim group is special,  we have become good friends.

I’m so lucky to live in a community that cares so much.

Recently I was in the hospital,  the front desk could not believe how many guests I had. I truly felt loved.

God has given me 4 extraordinary kids who amaze me every day. My selfless husband is my rock.

So even though I am completely paralyzed and can not speak,  or eat delicious food,  I live life to the fullest. I still give the best gifts.

Thank you to everyone who is there for me,  it means so much to me.

NOW PLEASE CURE ALS QUICKLY! 

[shirat-devorah]

Five Years

Five years ago I was diagnosed with ALS. Doctors gave me 2 to 5 years.

GUESS WHAT?  I AM STILL VERY MUCH ALIVE! 

I am determined to be around for a long time.

My kids have defied the odds,  they are all top students,  despite loosing the mom they once had.

How ironic is it that I finally got the kitchen of my dreams when I can no longer cook or eat?  

In the past year I have seen who my true friends are. Friends who are still around after 5 years. I have also made incredible new friends.

I have crazy neighbors and friends who come every Shabbat,  we always have a blast.

Wonderful people continue to cook for my family.

I communicate via a tablet using my eyes.I am happy to announce that I am still the best shopper.

ALS wiill never beat me. I am too strong and smart.

Join me in celebrating my 5th birthday of my ALS life. It falls the day before valentines day.It has taught me to love everyday.

Life is prescious,  embrace it. You never know when it will change.

(pardon my spelling,  I wrote this at 3am)

I love everyone who come to my house every wednesday night to say tehillim,  it keeps me strong.

I will survive ALS! 

[shirat-devorah]

FOUR YEARS

It is four years since I was diagnosed with ALS. it is funny how I was diagnosed on Valentines Day,  a day filled with hearts and with love.

I have been showered with love from old friends,  new friends and complete strangers. every day has become valentines day.

When I was in the hospital for three weeks,  complete strangers came to visit me numerous times.

I have a friend who is ill herself,  yet visits every week.

I have neighbors who are like sisters,   who are here every Shabbat,  complete with a mug of unidentified “tea”.

I have amazing friends who shlepped to the city to visit me.

The friend who makesure my nails always look good.

My sister who came in from Israel to help me when I came home from the hospital,  my brother who saved my life.

My husband who is here for me 24/7

My rockstar crew who I love to death.

My crazy funny friends who come and make me laugh.

Facebook for entertaining me.

My kids for making me proud every day.

My heart may have stopped,  but it was too full of love to stay down.? 

ALS sucks,  but I must deal with it gracefully.

I hope they find a cure soon.

#alssucks #4years #love.

[shirat-devorah]

FOUR YEARS

It is four years since I was diagnosed with ALS. it is funny how I was diagnosed on Valentines Day,  a day filled with hearts and with love.

I have been showered with love from old friends,  new friends and complete strangers. every day has become valentines day.

When I was in the hospital for three weeks,  complete strangers came to visit me numerous times.

I have a friend who is ill herself,  yet visits every week.

I have neighbors who are like sisters,   who are here every Shabbat,  complete with a mug of unidentified “tea”.

I have amazing friends who shlepped to the city to visit me.

The friend who makesure my nails always look good.

My sister who came in from Israel to help me when I came home from the hospital,  my brother who saved my life.

My husband who is here for me 24/7

My rockstar crew who I love to death.

My crazy funny friends who come and make me laugh.

Facebook for entertaining me.

My kids for making me proud every day.

My heart may have stopped,  but it was too full of love to stay down.? 

ALS sucks,  but I must deal with it gracefully.

I hope they find a cure soon.

#alssucks #4years #love.

[shirat-devorah]

FOUR YEARS

It is four years since I was diagnosed with ALS. it is funny how I was diagnosed on Valentines Day,  a day filled with hearts and with love.

I have been showered with love from old friends,  new friends and complete strangers. every day has become valentines day.

When I was in the hospital for three weeks,  complete strangers came to visit me numerous times.

I have a friend who is ill herself,  yet visits every week.

I have neighbors who are like sisters,   who are here every Shabbat,  complete with a mug of unidentified “tea”.

I have amazing friends who shlepped to the city to visit me.

The friend who makesure my nails always look good.

My sister who came in from Israel to help me when I came home from the hospital,  my brother who saved my life.

My husband who is here for me 24/7

My rockstar crew who I love to death.

My crazy funny friends who come and make me laugh.

Facebook for entertaining me.

My kids for making me proud every day.

My heart may have stopped,  but it was too full of love to stay down.? 

ALS sucks,  but I must deal with it gracefully.

I hope they find a cure soon.

#alssucks #4years #love.

[shirat-devorah]

VISITING DAY AND MY MOM

Yesterday was visiting day and today is my Mothers 9th yortzeit.I feel like crap today physically and mentally. Visiting day put a  bit strain on my body and was exhausting.I recall my mom visiting me in camp and always took it for granted, expecting her to be there.

My mom would have loved to visit Ilan.  Every day with Ilan is an adventure and interesting.He is unlike any other kid. Visiting day was no exception. When we get to camp Ilan tells us that we must go to Walmart.Ben asked him if he had a list.Ilan said he had a mental list, but he must get toothpaste and shampoo because he brushes his teeth twice a day and showers every day. He then shows us his teeth proudly. Ilan welcome to the wonderful world of personal hygene!

He then tells us that he is obsessed with Hamilton, knows every song.He downloaded it onto his ipod.We must take him after camp.

We are on our way to get lunch and are stopped by a staff member who asks if we are Ilans parents. He tells us that Ilan and his bunkmates were having an inappropriate conversation about masturbation and teasing the girls. The camp psychologist spoke to the boys involved. Seriously !  These are 13 year boys, isn’t this what they do?

We continue walking and the head of the camp stops us to say Ilan is a great kid. Ben asked if she knows every kid and she said everyone knows Ilan, he is the kid with the hair ! ILAN AND HIS HAIR ARE ONCE AGAIN TOPIC OF CONVERSATION !

On the way to his bunk Ilan told us that his bunk won nikayon 3 weeks in a row. Ilan how about cleaning your bedroom at home 3 weeks in a row?

We go to his bunk and see 2 george forman grills, waffle makers and sandwich makers. Are these kids running a restaurant?

Ilan showed us what he made in wood shop- a skateboard ! typical Ilan !

At walmart Ilan gets: whitening toothpaste, shampoo, underwear, a hammock,snacks,healthy cereal, barbeque sauce and watermelon. WHO IS THIS KID?

Right before we leave camp a counselor comes over and said she was Ilans division head for 3 years and that Ilan is very respectable,polite and kind.

CAN SOMEONE PLEASE TELL ME WHO THAT KID IS?!

[shirat-devorah]

VISITING DAY AND MY MOM

Yesterday was visiting day and today is my Mothers 9th yortzeit.I feel like crap today physically and mentally. Visiting day put a  bit strain on my body and was exhausting.I recall my mom visiting me in camp and always took it for granted, expecting her to be there.

My mom would have loved to visit Ilan.  Every day with Ilan is an adventure and interesting.He is unlike any other kid. Visiting day was no exception. When we get to camp Ilan tells us that we must go to Walmart.Ben asked him if he had a list.Ilan said he had a mental list, but he must get toothpaste and shampoo because he brushes his teeth twice a day and showers every day. He then shows us his teeth proudly. Ilan welcome to the wonderful world of personal hygene!

He then tells us that he is obsessed with Hamilton, knows every song.He downloaded it onto his ipod.We must take him after camp.

We are on our way to get lunch and are stopped by a staff member who asks if we are Ilans parents. He tells us that Ilan and his bunkmates were having an inappropriate conversation about masturbation and teasing the girls. The camp psychologist spoke to the boys involved. Seriously !  These are 13 year boys, isn’t this what they do?

We continue walking and the head of the camp stops us to say Ilan is a great kid. Ben asked if she knows every kid and she said everyone knows Ilan, he is the kid with the hair ! ILAN AND HIS HAIR ARE ONCE AGAIN TOPIC OF CONVERSATION !

On the way to his bunk Ilan told us that his bunk won nikayon 3 weeks in a row. Ilan how about cleaning your bedroom at home 3 weeks in a row?

We go to his bunk and see 2 george forman grills, waffle makers and sandwich makers. Are these kids running a restaurant?

Ilan showed us what he made in wood shop- a skateboard ! typical Ilan !

At walmart Ilan gets: whitening toothpaste, shampoo, underwear, a hammock,snacks,healthy cereal, barbeque sauce and watermelon. WHO IS THIS KID?

Right before we leave camp a counselor comes over and said she was Ilans division head for 3 years and that Ilan is very respectable,polite and kind.

CAN SOMEONE PLEASE TELL ME WHO THAT KID IS?!

[shirat-devorah]

VISITING DAY AND MY MOM

Yesterday was visiting day and today is my Mothers 9th yortzeit.I feel like crap today physically and mentally. Visiting day put a  bit strain on my body and was exhausting.I recall my mom visiting me in camp and always took it for granted, expecting her to be there.

My mom would have loved to visit Ilan.  Every day with Ilan is an adventure and interesting.He is unlike any other kid. Visiting day was no exception. When we get to camp Ilan tells us that we must go to Walmart.Ben asked him if he had a list.Ilan said he had a mental list, but he must get toothpaste and shampoo because he brushes his teeth twice a day and showers every day. He then shows us his teeth proudly. Ilan welcome to the wonderful world of personal hygene!

He then tells us that he is obsessed with Hamilton, knows every song.He downloaded it onto his ipod.We must take him after camp.

We are on our way to get lunch and are stopped by a staff member who asks if we are Ilans parents. He tells us that Ilan and his bunkmates were having an inappropriate conversation about masturbation and teasing the girls. The camp psychologist spoke to the boys involved. Seriously !  These are 13 year boys, isn’t this what they do?

We continue walking and the head of the camp stops us to say Ilan is a great kid. Ben asked if she knows every kid and she said everyone knows Ilan, he is the kid with the hair ! ILAN AND HIS HAIR ARE ONCE AGAIN TOPIC OF CONVERSATION !

On the way to his bunk Ilan told us that his bunk won nikayon 3 weeks in a row. Ilan how about cleaning your bedroom at home 3 weeks in a row?

We go to his bunk and see 2 george forman grills, waffle makers and sandwich makers. Are these kids running a restaurant?

Ilan showed us what he made in wood shop- a skateboard ! typical Ilan !

At walmart Ilan gets: whitening toothpaste, shampoo, underwear, a hammock,snacks,healthy cereal, barbeque sauce and watermelon. WHO IS THIS KID?

Right before we leave camp a counselor comes over and said she was Ilans division head for 3 years and that Ilan is very respectable,polite and kind.

CAN SOMEONE PLEASE TELL ME WHO THAT KID IS?!

[shirat-devorah]

MY BAR MITZVA SPEECH !

Thank you all for coming to Ilans Bar Mitzvah. Some of you have traveled very far to get here, and I am very happy that you did.

Ilan Gedalia was born on Yom hatzmous a few months after Ilan Ramon had died. We decided to name him Ilan to honor a great hero. Gedalia was Bentzion’s grandfather’s name. Ilan Gedalia is a very strong name. Little did we know at that time how many big trees our Ilan Gedalia has been climbing since he could walk. He has really lived up to his name. Anyone who has spent time with Ilan would say that we should have named him Dennis the Mennis!

We were so excited when we found out that we were having a boy after 2 girls.

Ilan started misbehaving before he was even born. When I was 5 months pregnant, Ilan found a cozy place to cuddle up right on the veins that are at the top of my legs and stayed there till he was born, making it very hard for me to walk. When it was time to be born, he refused to leave me and had to be vacuumed out.Ilan came into this world at the tip of a Hoover!

As a toddler Ilan needed speech therapy.As he was learning to talk, he proudly told us that he loved to play with maggots and trucks with an F instead of a TR. Every time he said it we would crack up laughing. When he was 3 I took Ilan for his Halb interview. Morah Chana takes out a puzzle and asks Ilan to identity the pieces. To my horror, it is a puzzle of vehicles and in the center of the puzzle is a truck. Sure enough Ilan identified the plane, the car, the boat and the truck with an F. Don't worry, Halb accepted him, but they have our number on speed dial. We also called Ilan the Demon toddler because he would throw up anywhere and everywhere. Thank god he outgrew that phase. Ilan lost a almost every day in preschool, that I was tempted to glue it to his head. Ilan is very talented ! He managed to break his arm and a few days later he broke his fingers on the same hand. Ilan is the coolest kid I know.

Everything he tries, he masters.Ilan has won medals in judo, was a baseball and star and captain of of the winning soccer team.This year he was on the undefeated Halb lions hockey team. Ilan taught himself how to solve a rubik's cube. Ilan is a master at card tricks and a talented magician. When we took him to see the illusionists on broadway, we had already seen Ilan do those tricks at home. Ilan is also technical savvy.He was able to override the school firewall to download and watch movies. Ilan can do anything he tries. He has a wide choice of careers ahead of him. Ilans hebrew initials are alef and shin.They spell the word eish- which means fire.Ilan truly has a fire within him. Everyone who meets him sees it. Ilans latest hobby is doing backflips on the trampoline.He is channeling his namesake ilan ramon.Maybe one day ilan,you too will go into space. Ilan you make us laugh. For 13 years you have kept me on my toes.You are so loving and caring.You make me smile every day.I could not have asked for a better son than you.I am so proud of you and love you very much.

[shirat-devorah]

Happy birthday to me, today I am 3!

3 years ago today I was diagnosed with ALS. I was given my death sentence because ALS has no cure. Every day since my diagnosis is a gift.Every year that passes, is me defeating the odds. Why is there no cure? We live in a world where anything is possible. Last year the ice bucket challenge raised awareness and money for ALS research. Most of us have forgotten all about it, and we are no closer to a cure. There is a saying’ tzedaka tatzil mimuveas- charity will save us from death’. There is another saying’ the world stands on 3 things, torah, hard work and good deeds’. I propose a new challenge based on these sayings. The challenge is:3 YEARS, 3 DOLLARS 

In honor of my 3rd ALS birthday, I am asking everyone to give three dollars to someone who needs it. This small gesture should be done in merit of finding a cure for ALS!

#ALS

[shirat-devorah]

MY BRIDEZILLA

Before you jump to conclusions, let me tell you that I do not have any brides yet. What I do have is a BAR MITZVAZILLA!

Yes, you read that right, planning my son’s Bar Mitzvah has turned my son into a Bar Mitzvah Bridezilla and he is driving me crazy !

I have made 2 Bat Mitzvahs that were beautiful, fun and creative. My girls agreed on a theme, a color scheme and a give away. I chose invitations that they loved. They left most of the planning and details to me. ANow it’s  time to plan my son’s Bar Mitzvah, and I am sure it won’t be hard to plan. Boy was I wrong ! ! !

A few months ago,I had a great idea for a theme. Everyone liked it and my son told me what he wants on his kippa. I was happy that we figured it out so early. And then he changed his mind and out came Bar Mitzvazilla!

He no longer wants a fun invitation, he wants a formal one. He also does not like our theme anymore and tells me to change it. 

A week later he wants a red and black invitation. He now wants a classy dressy kippa, so we need to find a new logo. ARGGH! I am going to kill him ! 

So I spend hours searching for the perfect logo and invitation and he loves it. I am so relieved and start looking for unique affordable give aways. I find the best give away and I email it to my son. He emailed me back and said No Way !

What is wrong with this kid?

Friday night we sit down to dinner and I ask my son what is wrong with my give away. He tells me that it is not expensive enough. Seriously?! What does he want to give out?

He tells me something really good quality that his friends will wear everyday.

Uh kid, last time I checked our money tree has not grown and we have not won the lottery. A little while later he comes up with a new idea for a logo  ( not again ) and a list of ridiculous give aways. He wants me to change everything again. Well guess what? I have had enough of my Bar Mitzvazilla! I am in charge. I am going to make him a great Bar Mitzvah and he will love what ever I do, and I am no longer agreeing to any of his ever changing ideas !

[shirat-devorah]

Heartbreak, happiness, family and community

The last 2 weeks has been a rollercoaster of emotions for my family.It started off joyous as we celebrated the birth of a boy after 8 girls. Everyone was elated. Less than a week later another family member fell gravely ill. There is a hole in our hearts ! We have been smothered with prayers and love from friends and strangers. The community support is overwhelming and beautiful. ME KEAMCHA YISRAEL?

Please continue to pray for CHAIM SHLOMO ZALMAN TZVI BEN YEHUDIS CHAVA  and  may he have a complete recovery soon. Last night my son’s team played their first hockey game of the season and my son scored an amazing goal and everyone was cheering for him. I sat there beaming with pride and happiness even thought I was sad inside. 

Being surrounded by friends is the best cure for sadness. In times of crisis our community has really become my family.

Welcome to the world Frank, get well soon S and way to go Ilan !

[shirat-devorah]

Heartbreak, happiness, family and community

The last 2 weeks has been a rollercoaster of emotions for my family.It started off joyous as we celebrated the birth of a boy after 8 girls. Everyone was elated. Less than a week later another family member fell gravely ill. There is a hole in our hearts ! We have been smothered with prayers and love from friends and strangers. The community support is overwhelming and beautiful. ME KEAMCHA YISRAEL?

Please continue to pray for CHAIM SHLOMO ZALMAN TZVI BEN YEHUDIS CHAVA  and  may he have a complete recovery soon. Last night my son’s team played their first hockey game of the season and my son scored an amazing goal and everyone was cheering for him. I sat there beaming with pride and happiness even thought I was sad inside. 

Being surrounded by friends is the best cure for sadness. In times of crisis our community has really become my family.

Welcome to the world Frank, get well soon S and way to go Ilan !

[shirat-devorah]

Aunt Jemima

Good help is hard to find, comical help is not. Janice is my regular, wonderful aide. This weekend she went on vacation and the agency sent a random aide. Saturday morning this huge woman shows up lugging a suitcase. Why she needs a suitcase to work a few hours is a mystery. She tells my husband that she lives in Far Rockaway and took the train instead of driving because she thought Woodmere was far away. How that makes any sense, I dont know. I go back to sleep and when I wake, I call for help, and call and call and call.Finally my husband asks her why she isnt helping me and she says she didnt hear me. It was that we realized that she is hard of hearing. I have ALS.I talk low.An aide who cant here me or my husband is useless. She finally comes into my room and I see a 400+lb woman who looks like Aunt Jemima coming towards me. She tries to turn me over and pulls me by my head- ouch!

My husband helps me to the bathroom and back in bed.He asks her to help me sit up.That didnt work out too well.The whole time she is talking about me in 3rd person and shouting in my ear to ask me questions. I have ALS.I can hear very well.I can speak.I am not deaf or dumb. My husband asks her to turn the massager on my bed on and leaves the room.My feet start to go up, my head goes down, my head and feet go up and down but no massage.I am screaming and my husband comes running. A couple hours later I get dressed for lunch.I needed a drink badly and asked for a sip from my ccup that was a foot away.I asked and asked and asked, and she moved my foot,my hand and my shirt but no sip. I ask her to get my husband and she gets my brush !

After lunch I have to go to the bathroom. My husband helps me onto the bed and asked her to take off my skirt and underwear so I can go pee. My husband comes back and my underwear is still on.Why? how can I pee with my underwear on?

She is back today and useless.She has trouble moving herself and cant move me. She cant hear when I call. Doesnt hear or help me when I cough. Every time she touches the remote on my bed,I go for a wild ride.

Why the agency would send an ALS patient an aide who cant hear well and cant move well,I do not know.For the last 2 days the only help my husband had for me was a hard of hearing Aunt Jemima / Amelia Bedelia. Thank gd for Aleve.After this weekend my husband and I need a good massage.

[shirat-devorah]

Talking Too Much Can Be A Good Thing

I have always been a talker. I talk to anyone and everyone. Complete strangers would confide in me. I have a great memory for details. I read a lot too.I always seem to have something to say. My mind works super fast and is super sharp. My eyes see everything. Nothing gets by me. I have eyes in the back of my head. Monday I went to the doctor..Thank Gd my disease is progressing slowly. Most ALS patients loose a lot of weight, which is dangerous. I miraclously have gained a lot of weight on only 1800 calories a day. The doctors were all baffeld. A big concern and turning point in ALS is when you can no longer breathe on your own and need a tracheotomy. I told my doctor that I am making a Bar Mitzva for my son in a year. I then asked him if he thought I could make it that long without needing a tracheotomy. He tells me that you need a tracheotomy when you can no longer talk at all, and since I did not stop talking during the entire appointment, I am far away from needing a tracheotomy. So I am going to continue to keep on talking and talking and talking. I may not always sound clear, so be patient. It’s not over till the fat lady stops singing, or in my case talking, and even then it’s not over because I am one stubborn lady. #als 

[shirat-devorah]

ALS Might Deter Me But It Will Never Stop Me

feed myself. I am however, very much alive. My hearing is stronger. My vision is perfect and my mind is still working overtiALS is a strange disease. It weakness and kills parts of your body and in the process strenghens other parts. Today is Holocaust Rememberance Day. The Nazis weakened and killed so many Jews.Through this horror,they made the Jewish nation stronger.They tried to kill us off and failed. ALS is my nazi. It has weakened my speech. It has weakened my muscles. I can no longer walk,write or feed myself, however I am very much alive. My hearing is very good.My vision is perfect.Most important is the the fact that my incredible mind is still working overtime. ALS cant stop me !

We had the opportunity to spend Pesach at the Somerset Hilton. It was a true gift to me and my family.Had we stayed home,I would have spent most of the holiday in bed, hardly leaving the house.Instead I was able to stay up for both Sedarim,be at every meal with my family and societies all week. My kids were occupied and happy,but most important,my husband and kids did not have to prep,cook,serve and clean up for 8 days.Once again we were a family. I did not leave the property at all over Pesach , yet I hung out with friends,went to a concert, saw a commedian and hypmotist perform and went to a casino.I had dinner with mickey and minnie in the magic kingdom and tea with cruella deville.I even got to take my son to a carnival. It was really great to get away and keep busy.I had been spending too much time with my dvr.I felt like myself again, dressing up and wearing make up every day. I love life and everything around me and I want to continue to experience the beauty that surrounds me. I WILL NOT LET ALS BEAT ME ! #ALS #PESACH #FAMILY

[shirat-devorah]

Doing it All

Last week was my birthday.My husband threw me a huge party and many friends and family came. How he found the time in his overworked day to plan a party, I do not know, but I do know that I love him for it.

Even stranger for me is the fact that my husband actually did plan a party at all, since I have always planned every party, and all he had to do was show up and host.

Before I got sick I was a powerhouse. I worked full time, did all the shopping, took the kids to doctors appointments and sports. Almost every night I cooked dinner. I made my own pizza. Every Thursday night I baked 2 kinds of cookies and a cake.Friday I made challah. I made pesach,mostly on my own. I was a force to be reckoned with. My husband was the typical husband.He went to work, paid the bills, enjoyed my food  and helped whenever I asked. Before I got sick my husband didnt know the kids teachers names or where the local groceries were. I now have had ALS for 2 years and need help with almost everything. My amazing husband has gone from being a husband to being my caregiver and becoming me  (yes, he makes pizza and bakes cookies ). He is one man doing the job of 3 people, with no days off. 

My husband wants to make pesach this year.I know it will be too much work for him  before and during the holiday. It would be ideal to go to a hotel for pesach. My husband can finally get the rest and relaxation he needs and we can have family time together. The hotels are very expensive and we are hoping someone can help work with us to make it affordable.

I truly have the best husband and want to help unburden him any way I can.

#als #pesach #benschochet