"Big Guy"
Established by Sue Engasser
Upstate New York Chapter
"Big Guy"

    The world will never be the same... never again.  We have lost an amazing man to this terrible disease.  Not once did he complain.... not once did he ask why.  He kept on smiling... he kept on loving his family and touching our hearts.  He was full of life... loved life more than anyone we know.  His laugh was contagious and his generousity was unmatched.

    We need to let people with ALS know they are not alone.  ALS affects more than nerve cells and muscles, it affects families, friends, co-workers, and communities. 

    With no known cause or cure, ALS challenges the human spirit and tests the courage of everyone touched by this devastating disease.

    However, we can work together to create a Community of Hope that restores dreams and builds courage.  Our community gives strength and hope to our loved ones, neighbors, and friends facing the fear and uncertainty of ALS.

    Your gifts will make this possible.  Please click the donation button to the right if you want to help other families fighting this disease and contribute to the research of finding a cure.

    Thank you for helping us build a Community of Hope and honoring our HERO!  Goran has a special place in the hearts of everyone he touched and we will continue to celebrate his life and the amazing person he is!

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    My Blog

    Topics

    A daughter's tribute (Sue's Eulogy)
    It's been almost 9 months since my father passed away... After his funeral I had a few people ask to read his Eulogy... Here is a copy:
    Thank you from the bottom of my heart for being here. It is such a healing gift to be surrounded by your love and respect for my father. I've worked on this Eulogy all week... to be honest I started planning for it weeks ago.... I wanted it to be perfect. It was easy to write because I have so many fond memories of my dad... and because he was such an amazing person... but each day during this last week I would re-read it and it never seemed good enough.... It never will be... he deserves perfection.
    Everyone here knows how much my father loved life... he truly was grateful for each and every day. He was diagnosed with ALS on January 17... yes that is less than 2 months ago. I never knew what ALS was... I soon realized that it was the disease without hope... the disease that would take him away from us. We believe a lot of the early signs were missed... or he just did a really good job hiding them from us. I fought really hard to find out what was wrong with my dad... I eventually got to the point where I took him to the doctor and told them "I don't need you to tell me if something is wrong with him... I need you to point me in the right direction to find out what is wrong with him"..... The following week we were at Dent Neurological institute... Toby and I went to all the appointments together.. But there was one(during a snow storm) that I took him to alone... It was the EMG appointment. He laid there on the table getting electrical shots put into each and every nerve. The test should have lasted 20 minutes... His took nearly 2 hours. I held his hand the whole time and asked him if it hurt (knowing it did!)... He reassured me that it didn't... He didn't want his little girl to know how much pain he was in. At the next appointment the doctor told us that he had ALS... my father didn't say a word... Toby and I cried... he didn't shed a tear. On the drive home he grabbed my hand and told me that everything was going to be ok and that he didn't have ALS.. that it was a mistake... because people die from that... and he wasn't going anywhere. He never complained... not ONCE.... As he lost the ability to swallow... then walk... and then eventually talk... he never complained... never asked "Why me". He was by far the most positive and optimistic person I had ever met.
    He loved my mom more than anything in this world... I can't even tell you how many times he told me that she was the best thing that ever happened to him. Don't get me wrong... they drove each other crazy sometimes but they ALWAYS stuck together... they really were the best of friends. He was the total package. My father was an entrepreneur and was always pouring his heart into making the world a better place... but he had this amazing balance of work and family. He worked a long day and as long as he got his 30 minute snooze on the couch (with no shirt on of course).. he would cook dinner, do the grocery shopping, take us kids outside to play.... Don't get me wrong.. my mom was an amazing stay at home mom BUT she hit the jackpot with him too! Not only did he bring home the bacon... but he helped cook it too! They really were perfect for each other. Toby was his pride and joy. Watching those two bond over the last few months was priceless. Toby literally gave up everything on January 17th and was there each and every day for my dad. Toby- Always know how happy you made him... and how amazing your time with him these last few months were. He is so proud of you and I know that you are going to do an amazing job filling his shoes.
    He was my daddy... and I was a total daddy's girl. I have always been a complete sucker for my dad... he melted my heart. If you ask my brothers, they will tell you that I had him completely wrapped around my little finger... and well I can't argue that.. It's true.. he really thought I hung the moon! He traveled the world and never showed up at the home without a beautiful doll or a new"princess gown" for me...At an early age he nicknamed me "Queen Bee"... He answered every call I made to him with "Hi Queen Bee"... in his phone my contact says QB.... As I grew older he taught me how to be tough and stand up for myself... He had to... because I had three older brothers... He taught me how to throw a ball NOT like a girl...how to choke up on the bat and wait for my pitch.... He was the only one who had the nerve to catch for me when I spent hours perfecting my fastpitch. He helped coach my softball teams... he never missed a game. He was my biggest fan... not only in my 14 years of Softball but in life.
    Im a lot like my dad.... Actually I can recall my mom telling me "you are just like your father"... in my teens when my mom and I were arguing! She would tell you that I had his persistence... I NEVER gave up and I RARELY lost an argument. My father taught me that if you are wrong... never be afraid to apologize.. but if you believe in something then you fight... you fight hard and you never back down! Andrew would tell you that I have my father's kind heart... and his stubborness. I vividly remember Toby and my dad telling Andrew when he proposed that "you have no idea what you are getting yourself into!"... they had watched me grow up... The guys in our house would flee home when I was in my teens and my mom and I argued.... They knew to leave and come back a couple hours later.... Toby would tell you that I got my father's wisdom and his values... My father would give the shirt off his back to anyone. Those I work with, especially Brian... would tell you that I got his business smarts... and his love of people... and the ability to connect and build relationships.... There is no doubt that my father has made me who I am today.
    I'm sure that there were moments that I nearly gave him a heart attach.... Actually I am quite positive. There was that time that I totaled a brand new ford focus that he brought home for a test drive over the weekend.... Ok to be honest I totaled it while he was at the dealership signing for it... I called him crying... trying to explain that I thought the two way stop was really a 4 way stop... he put the pen down, drove to me and I listed to him ask me 200 times how I could possibly make that mistake... Then he handed me the keys to the mini van! There's more... There was the time I decided to move Jen's BMW which was stick shift.... I had no clue how to drive a stick shift and why in the world were there 3 peddles?!!??!! I missed the garage door by a hair when my mom came running to the rescue and launched herself in the car to hit the break! Then there was the time that a police officer followed me home and right into the driveway.... I was speeding and he didn't think that my excuse was good enough... My dad got me out of that ticket.... And then I had to listen to him tell me atleast 200 times why It was so dangerous to speed... he rarely yelled... rarely punished... he just repeated himself over and over and over.

    I made my dad a few promises just days before he passed. I promised him that I would always take care of my mom... I reassured him that he didn't have to worry... that I would make sure she had an amazing life..... He asked me to make sure that Toby was always ok... he told me that Toby comes off as strong but that even he has moments of weakness... I promised him that we would always stay a strong, loving family.
    I'm thankful that my two boys had the joy of having him in their lives. I look at Talon and I see him... I'm thankful that when I look at Talon I see my dad... he was so proud of all of his grandkids but always said that Talon was his "mini me"... I am confident that Talon is such an amazing boy with so much kindness in his heart because of my dad... I am thankful that he had all of you in his life. He loved people... and he is looking down today and smiling at us all.
    We can all rest assured that we have the worlds greatest guardian ang

    by Sue Engasser on Fri, Dec 05, 2014 @ 6:58 PM

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    A Day to Celebrate Big Guy
    On August 2nd 2014 we celebrated Big Guy at the Buffalo ALS walk. I spent the months leading up to the event planning with the ALS walk committee as I now hold the logistics chair for the walk... It was one of the best experiences I have had. I met amazing people, got to help a great cause and most of all... honor my dad.
    The meets were held in Orchard Park and I really looked forward to them. The 30 minute drive there and back became my time to listen to the radio and think about my daddy and how much I missed him.
    Our Team had over 60 walkers.. we were the 3rd largest team out of 55! Our team alone raised $4,650.00 with the event bringing in over $170,000 for ALS! We ranked in at #7 out of 55 for fundraising. We sported our Big Guy T shirts with swedish flags on the sleeves... It truly was a perfect day. The forecast called for rain... but that morning the sun sure was shining! My dad use to always say that i lucked out with the weather.. every party we ever had the sun shined.... I know that it was him looking down on us! I can't wait for next years walk! It was so touching to have all our friends and family come together for the event... I miss you daddy....
    Your girl
    Sue

    by Sue Engasser on Wed, Aug 13, 2014 @ 12:35 PM

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    Trying to heal the wounds
    I am convinced that when you lose a loved one... you never really heal. Your life will never be the same and the Grieving that is estimated to last about 6 months... well it will last forever. What I am starting to realize is how to pick up some of the broken pieces...and try to one by one glue them back together.
    My 27th Birthday was on June 9th... exactly 3 months after my dad passed away. I dreaded the day... even though I know my dad wouldnt want me to... he was always the big celebrator in our family. Although I missed him dearly, had my outburts of tears.... my family came together and made the day really special. I learned that because of him... the way he celebrated our birthdays... my family picked up the pieces and carried on the tradition.
    Father's day.... Another really hard day... It was heart breaking to wake up that morning and not be able to call him and tell him I loved him. I felt sad and devastated... I texted Toby and simply said "It sucks not having a dad"... his reply was simply "Yes, it sucks".... I think we both cried while exchanging those texts....Sure.. we celebrated my wonderful husband and father in law... but something was missing... my dad was missing.
    Talon's birthday... He turned 6 yesterday.... As Talon opened his presents one by one... he opened a very special one... it was a shutterfly book titled "My favorite memories of farfar".... I poured my heart and soul into it... it was never perfect enough but I convinced myself I would just have to make him more books... because lets face it there are probably thousands of pictures I wanted to insert. When my father passed away I decided that one of the best ways to honor him was to make sure that his grandkids, who he loved more than anything in this world, would vividly remember how amazing he was.... That is when I decided that this year every grandchild will get a Photobook with their favorite memories of Farfar, filled with only pictures of him and the birthday kid.... I know he would love that.... Talon loved his book and I have a feeling it will become his favorite bedtime story!
    I guess what I am saying is that we never really heal completely... our hearts never truly mend... there will always be broken pieces and there will always be scars... BUT.... slowly day by day we adjust... and we figure out ways to continue honoring our loved ones... and we learn that even though they arent here on earth... they are forever in our hearts.
    I am so looking forward to the ALS walk on August 2nd... it has been such a good outlet for me to be apart of the committee and I love making a difference. We currently have the largest team in Buffalo and have raised over $1300.00. I just cant wait to walk that day with our friends and family... honoring one of the most amazing people we all knew....
    Love,
    Daddy's girl

    by Sue Engasser on Fri, Jun 27, 2014 @ 1:16 PM

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    Trying to adjust....
    Easter passed... it's now over... I had so much nervousness, anxiety and sadness with Easter approaching that I really wasnt my normal self. I usually go all out for Holidays... it is something my dad and I had very much in common. This year it felt as though I just wanted it to come and go. Dont get me wrong, I wanted my kids to enjoy the holiday but I was secretly crying inside. It was the first of many holidays without dad... It was so different... The day went better than I had anticipated... I thought I would just cry all day... but it all hit me right after the easter egg hunt. I got through the hunt just fine... but when that settled.. it hit me hard... I had to pull myself together for a few minutes in my moms bedroom. I know the day was hard for her but boy is she amazing. She invited over Leanne's mom as well as Andrew's parents to her house. I mean the woman just lost her husband and she pulled off this amazing day and made it special for everyone. I know how hard it was for sure but she did a great job. Toby.... he is just awesome. He pulled off the egg hunt flawlessly... and then he did the most amazing thing. My father had this wooden face that you attached to the tree, it made it look like the tree had a face LOL... the thing that was great was that it looked just like him... Well my dad never hung it up at the new house, he actually left it at the old house. Well, Toby had gone to get it... and on Easter he got out the ladder and hung it up with the kids... It is almost like its dad watching over us. On Easter Sunday we also lost my husbands Grandmother. .. It was so hard to tell Talon that another amazing person has left this world... but he felt better when I told him "farfar" was welcoming her into Heaven... but Boy.. 2014 has been a rough year! I am hoping the rest of the year is quiet and uneventful.
    I keep waiting for it to get easier, for it to finally sink in and stop hurting so much... but the truth is that it hurts more and more each day. Talon has started baseball and everytime I drive him there I think of my dad, and how he would be right there next to me cheering for him... I have asked myself a million times why him... why now?
    Tonight I am heading to the first ALS Buffalo Walk committee meeting. I was asked to join the committee and am super excited... but a little nervous that my emotions will get the best of me. One thing is for sure, if I can do anything to try to bring awareness to ALS and help find a CURE i am going to. I wish no family the pain that we have gone through... My hope is for a world with no ALS....
    We are over halfway to our goal... but the truth is our goal is neverending... our fight will go on forever.... I miss you daddy.... your Queen Bee

    by Sue Engasser on Wed, Apr 30, 2014 @ 4:08 PM

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    Missing my daddy
    We did it.. we made it through the wake and service.... we are so appreciative of all the folks who came out to honor my dad at the wake and service. There was one point at the wake that i left the room and came back and it was packed. I stood there, taking it all in. The room was absolutely jam packed... because my father had an impact on all those people standing there... It made me even prouder to be his daughter.
    The Eulogy was so hard to write and even harder to share but I was determined to get through it... I wanted to share with the world how amazing my father was.
    The week after everything "settles" is really awkward. Going back to work monday was exactly what I needed to do but it just felt weird. Leaving work and going straight home instead of my parents house to help take care of my dad just didnt feel right.
    I am really trying to put my energy towards my boys... and try to focus on the positive things in life but it is REALLY hard. Just when I think I am going to be OK... something happen.. like the Appointment reminder for "DADS DENT Doc appt" poping up this am on my computer.
    Oh how I miss him :( I can't explain it but I feel like I have been ripped off! I know that i have more amazing memories with my dad than most people have in their entire lifetime.. but I really did appreciate him everyday of his life... why couldnt i have that longer? He was my rock!
    Thank you everyone for your support

    by Sue Engasser on Wed, Mar 19, 2014 @ 3:03 PM

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    Thank you... It truly is humbling
    Thank you to everyone for your kind words, support, love and contributions to the ALS BIG GUY fund. Last Tuesday I was driving my dad to the hospital for his second attempt at a feeding tube placement... he was quiet because he was nervous... OK and because he thought I was the worlds worst driver and frequently told me that everytime he got in in my car he was risking his life!!!
    .... anyways... we were driving down Maple and he all he said was "what a terrible disease this is... I hope that very soon this disease ends... It is terrible to have it take over your body"... He then went on to try to reassure me that Toby and I wouldn't be subject to this terrible disease... it was like he was trying to reassure himself... That's dad... always worrying about others.
    It is amazing how much support we have received.. from all over the world... He truly had such an impact on people everywhere. Today is the perfect day for a snowstorm (other than poor Toby having to plow :) ).... I can sit inside all day and pour my heart and soul into his scrapbooks... pictures.... memorial cards.... It is almost therapeutic for me to sit there... with hundreds of photos of him spread all over the floor.... arranging them...
    Thank you again for all of your support... Dad is surely looking down smiling at us all.
    - Sue

    by Sue Engasser on Wed, Mar 12, 2014 @ 8:47 AM

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    The Silence....
    Silence,,,,, the silence. No FB posts , No phone calls, No weather alerts , No dog pictures, No group text messages, No emails, and No more drop ins. Those are just a few of the many we all miss from you. You were always there to check in , make sure we were ok. These last 2 days have been silent. You touched the lives of so many around the world , I know they can all feel the silence.....
    We pray every night with Matias, and he asks Jesus to make far far and max better and bring them back down to the ground . I'm not sure how we will get these little kids through this silence either. It's true when they say one day at a time. We will have to somehow make a new normal I know this , but there will always be a little "noise" we are missing. I love you to the moon and back!
    -Leanne

    by Sue Engasser on Tue, Mar 11, 2014 @ 11:51 PM

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    The day that not even 'the planner" can plan for
    Growing up I had a little bit of OCD... okay ALOT! My dad would certainly tell you that I was the planner in the family. This is probably why at an early age he started calling me "Queen Bee"... In his phone I am saved as "QB"... When he answered he would say "Hi Queen Bee"... It was just the way things always were... I planned and planned and planned... I wanted things to be perfect and I wanted them in order.
    When my father was diagnosed with ALS I knew that I had to plan for that dreaded day... the day he left us. I swear every week I had good intentions to go to Amigone... and plan. Planning gives me comfort... But each week I procrastinated. It is probably the one and only thing in my life I kept pushing away off of my "To-Do" list. Well... I never planned... and looking back, I probably couldn't ever have done it. Toby picked me up this morning at 8:30... as we drove to Amigone we both knew what dad wanted... we just knew how he was. It was hard.... it hurt... and I just hate being in those funeral homes...
    As we walked out we chuckled.. I looked at Toby and said "dad is looking down on us swearing about how much money we just spent!!!!" On the drive home we decided one thing for sure... After the service there will be coffee AND PAULA's DONUTS! those were his favorite!!! A couple weeks ago he would call me in the morning and ask me to stop there for him... He loved Paula's!
    We did it... we made it another day... one day at a time right?!
    -Queen Bee :)

    by Sue Engasser on Mon, Mar 10, 2014 @ 5:02 PM

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    Getting through the first day without Daddy....
    When you lose someone you love so dearly... It really changes you. You feel emptiness, devastation and absolute fear. We are blessed to have an AMAZING family. It is for sure what my dad was proudest of... But still... getting through that first day is so hard. "Taking one day at a time" never related so much to us before. The house tonight was full of the kids running around... but it still felt so empty... He wasn't there... cracking jokes, teasing us and kissing those grandbabies.
    It is amazing how people come together when something so terrible happens. The Englert family and Gross Family came by with loads of food... Talon and Matias were thrilled.. they ate like grown men :) Thank you to everyone for all your kind words... I know we all feel devastated tonight... This week is going to be tough.. really tough... but we look forward to celebrating his life and honoring him forever.
    As my dad would say on facebook "Good night my friends, sleep well and tomorrow I hope you wake up feeling well rested"- The Viking!

    by Sue Engasser on Sun, Mar 09, 2014 @ 9:51 PM

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