Three Years.......

Three Years since you left us Matt O. and I feel like after you died, we had the pandemic and my professional life got crazy and I haven’t had proper time to grieve you.

Today I listened to you singing The Lord’s Prayer which I have heard hundreds of times and it’s calming. Then I listened to “You Raise Me Up” and it hit me ….. and the tears rolled.

I miss you so much, I miss our talks, I miss your crazy ideas, I miss taking you treats, I miss it all.  I miss my brother.

I saw a Facebook post the other day about what MS took from you – it was meant for people living with MS and I stopped and paused for a moment.  Well MS Took my brother (a father, a husband, a friend) away. But what did MS Take from Matt? Besides the obvious, it took his vision, then his mobility, then his spirt and that’s what hurts the most! The personality that Matt was; larger than life, life of the party, happy, caring, loving, helpful, hard working, do anything for anybody man that he was. That’s what it took.

It makes me sad that the younger generation today didn’t really get to know healthy Matt.  I sometimes wonder what I am supposed to learn from life’s events. What is God’s master plan?  I read a book recently, Stranger in the lifeboat by Mitch Albom and a phrase that has stayed with me:

“When someone passes, people always ask, ‘Why did God take them?’ A better question would be ‘Why did God give them to us?’ What did we do to deserve their love, their joy, the sweet moments we shared?”

The same author’s book Tuesday’s With Morrie (The inspiration for a “A Chat with Matt” blog) he writes “Death ends a life, not a relationship”.  Grief is a funny thing. While we know the cliché’ sayings “He’s in a better place….”, “He’s not suffering….” It still hurts. I know my brother didn’t want to live how he was living but it doesn’t make it any less painful to lose someone.  I find a peace in remembering all we shared, the visits, talks and phone calls and before that the choir practices and family get togethers.

I am truly grateful for my brother, for the lessons he taught me, the friendship and support.
Nobody can take away the memories or the blessing that he was.

So on this day while I recall the date of his passing, I will recall the life he lived.
Larger than life.  And if you know….you know:

“What do you feed your babies”? 
“Wide Mouth Frogs”
(lips pursed together) “OH ya don’t say”

 

Here's to you Matt O.  I love you!

It’s been 2 years since Matt passed…..

I miss my “Chat’s with Matt” – a lot.

This pandemic would have been very hard on him especially when nursing homes weren’t allowing visitors so in that aspect as my momma always said “The Lord works in mysterious ways”.
This pandemic has been hard on me and I know on a lot of people in a lot of different ways but the nursing home residents that couldn’t have any visitors for such a long time not really a comparison to the challenges it has made me face (mostly just work stuff).   Because of the pandemic just several months after Matt’s passing, I feel that I haven’t really grieved his loss; coupled with the fact that I actually “lost” my brother to MS several years ago.  

He didn’t want to live like he was living as his quality of life had steadily gone downhill over the past several years.   We tried so hard to find things, to do things to make ways to give him a sense of purpose and a sense of hope but he didn’t see the joy he gave us just by simply being him and being there.   I understand how he felt, because we talked so many times about it.  He missed what he “was” and didn’t like what he had “become” and he was angry.   When he was denied the disability the first time, he called me, I will never ever forget it, I was in Columbus on a girls shopping trip.  He told me “I feel like such a failure”. As if. As if he asked for this.   As if he didn’t want to work and provide for his family, as if he didn’t want to see, to walk, to be able to pick things up and eat them on his own (without help or without making a mess.).  As if he didn’t want to be whole.   I don’t know why Matt had this journey, but he did, maybe to touch the lives he touched.  Maybe someone he met learned about M.S. or how to treat M.S.   

If you don’t know about Matt’s journey, he had M.S. (Multiple Sclerosis) and it affected his vision early on and he couldn’t see well. He explained it to me once like double vision. If he stared at something long enough he could focus on it but it took him some time.  His other muscles were affected as well and he lost the ability to walk, and his finger/hand dexterity deteriorated (Think about not being on your smart phone---- he could not only not see it, he couldn’t push the right buttons to do things with it)   At an M.S. event they took and rubbed Vaseline on goggles to show how vision was affected and  a flipper (for swimming) on one foot and a high heel on the other- and that is what It felt like to walk.  I asked him about that once and he said it’s like when your foot or arm falls asleep….only it never goes away.    

I can’t imagine living with that every single day with no hope that it will get better.   

What I remember about a young and healthy Matt was his zest for life and his huge personality, his amazing voice and his sense of humor.  Matt was the most caring, giving and loving guys I have ever met.   He was SO funny!   One year when I was young, divorced, struggling to make ends meet, he bought me a DVD player because we didn’t have one.  Before you could live stream anything you wanted, the only way to watch a movie was to rent one or buy one.   Another time I was trying to fix my own plumbing problem (Matt was a plumber) and it was my first home with my ex-husband, I decided that I was a plumber’s daughter and I could fix this by myself.  So at 9:00 at night (my ex was working) 
I decided to take a P Trap off myself and I broke it.  It was our only bathroom.  I called Matt. He came to my rescue and fixed it that night.  This was the type of guy my brother was.  There are so many more stories I could tell.

He was my big brother, my protector, my confidante.  Matt and I were the only two (of six) kids left at home when our siblings went off to college, marriage and life. There is a pretty significant age difference between the oldest and youngest (15 years) and I think we all experienced things a little differently because of the age gap.  Matt was 4 years older than me, 5 years in school.  He was a senior when I was a 7^th grader.  I looked up to him in a way that I cannot describe. I was proud to be his little sister!! (I still am)
He never judged me, even when he could have (and probably should have) and he was there for me even when I probably didn’t deserve it. 

A big heart, a big voice, a big love.  That is how I would describe my brother.

It’s not just today, the anniversary of his passing, but every day that I think of him.
So when they say “he’s in a better place” – I take comfort in that he is no longer suffering. 
I truly hope he is running free in heaven and sitting with my parents and smiling down.

If you’ve ever seen the movie Wicked there is a song…..”For Good 

A few of the Lyrics (and how I feel about Matt O.) 

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them…..
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you…

Listen to it by clicking HERE. 

One Last Chat

What I wouldn't give for one last Chat with Matt. Sure I can still talk to him, but how I would love to have a real conversation with him.  I was reading through the old blogs tonight and I realize we started out strong and really slowed down how often we did a blog, although we did have our Facebook Group to update people. Matt loved people.  Matt loved his family. Matt loved me.  (And I loved Matt.) 

This past week has been a whirlwind and all sort of surreal at this point. We knew the disease would never get better, we know it would get worse but what we did not know is how quickly this would happen. I guess you never know.  You never know what any moment will bring and that is why you should live life to its fullest. Never take anything for granted, big or little. It's so cliché to say live every day as if it were your last....  But it's true. What if you don't get the chance to say goodbye to someone, or tell them you love them, or you're sorry or you care or any of a hundred other things....What are you waiting for?  Do it today. Life is short. Nobody believes that until they get a little older, a little wiser or they watch a little child grow up. It.Happens.Fast. Don't wait for the time to be right, the time will never be right. You can make excuses or you can make it happen. 

I have a lot of Faith in God. I truly, truly do. Sometimes I don't hear him, and I've been told it's because I'm not quiet enough to listen. (ha ha, I do try)   I want a burning bush.... I want a booming voice from the sky.  I want to know the why....everything happens for a reason...what is the reason for this?  I'm sure one day I will find out.  Time does have a way of healing and you can get bitter or you can get better. Time heals, it doesn't forget, but it heals. If you get angry over the bad things that happen you will waste away what is rest of your life. Have Faith. Trust God. 

I will miss Matt terribly. I will miss our chats over diet pepsi. I will miss knowing he is there. I will miss him calling me to tell me something completely off the wall because he thought of it and I will miss him listening about my day or my family. I will miss hearing how proud he is of me. I will miss him. My brother, my friend, my confidante. He listened, he cared and he understood me in ways that most people do not.  I hate that I didn't know our last conversation was our last, when he spoke to me, but I do know the last conversation I had with him alone, just the two of us, I said "I love you" and he mumbled it back. I played music for him and I held his hand and I loved him.

The showing of support from our family, friends, our community - was truly remarkable.  He was loved and respected and that was evident by the amount of people we saw come through that church. 

One of the hardest things for me was watching his children mourn the loss of their father. Matt was 56. Our dad was 55, I was 16 years old. Julia (His youngest) is a little older than I was when my dad died, but I know that emptiness, that feeling of knowing your dad won't be at all your big events....and I understand it.  (Julia, I will always be there for you!)   Matt was a lot like our dad -Hard worker, great provider, strong family man.  Matt's presence much like my fathers was larger than life. The legacy my dad started, Matt carried on.

They both made a difference in the lives of so many people.  

I know I'm rambling on now, but I felt the need to write one last blog for Matt (about Matt) and to thank all that supported him.--- visited, prayed, called, wrote or just thought of him through the last several years.  We started this because he wanted to tell his story and I promised to do it for him.

His story has now ended and I know he would also want to thank you.

State of the Union ….

Matt and I had a nice chat today and we decided we haven’t done a blog post in a while.
So we decided on a “State of the Union” or “State of Matt O.” address! 

Matt has had a rough go of it with a fall right after Christmas and a UTI that really zapped him of his energy or as he said “It really kicked my butt.” 
I asked if he had anything to say and he told me that he knew if anyone could put it into words that I could. (ha ha) but he wanted to say “Don’t take your health for granted, when you are young you think you’ll live forever and you just never know when something will happen.”  Simple things, like moving your legs…which he can not do.  He did have some therapy today and that always tires him out.  He was however in good spirits and was one of the best visits we’ve had in weeks. 
We talked about our mom and how she fought after her cancer diagnosis and with her rheumatoid arthritis, she lived with chronic pain.  I can’t imagine how Matt must feel with the MS, the limited vision and aches and pains.  They say that the nerve pain is like if your foot falls asleep only it’s not just your foot and it never goes away.  He feels better, though and his spirits are lifted.
He absolutely LOVES visitors, even if you can only stay 10 minutes, it perks him up like you wouldn’t believe. He recently had some former co-workers visit and he just loved it. 
You don’t have to bring anything just your presence is what he desires.  If you feel compelled to bring something, he loves diet pepsi and reese cups! 

Matt loves his grandchildren so much! His legacy!

 Pictured is a picture that his daughter Katie made with her children Ellie and Connor. Little Connor looks just like “Pops”  (And I see some of Matt in little Carsyn as well) and he lights up when he talks about them!  He said “They are something else.” He is so proud of his family!  You can just hear the pride in his voice when he talks about them all!  Love Never Melts! And Matt O. is LOVED! 

In conclusion Matt would just like to thank those that come and see him and his family for being there for him through the ups and downs!  2018 was a rough one, but he’s feeling better and hopes 2019 brings him more ups than downs. It’s hard to maintain a positive attitude all of the time and not be angry at the illness, however he’s trying to find the positive.

Please continue to keep Matt O. in your thoughts and prayers! 
He is at Bellevue Care Center, Room 103.  (Corner of Flat Rock and Gardner Roads) 

Love,
Kellie…. for Matt O. 

Thrill of Victory - Agony of Defeat

I know some people are too young to remember ABC “Wide World of Sports” and they had the montage “The Thrill of Victory and the Agony of Defeat” and they showed this ski jump fall by Vinko Bogataj 
https://www.youtube.com/watch?v=x7frGJf77AA (Shown in the first 30 seconds) 

This is how Pastor John started his sermon today.  The reason for the fall…"Midway down the inrun for his jump, Bogataj realised that the conditions had made the ramp too fast. He attempted to lower his center of gravity and stop his jump, but instead lost his balance completely and rocketed out of control off the end of the inrun, tumbling and flipping wildly, and crashing through a light retaining fence near a crowd of spectators before coming to a halt. “ (wikipedia)

Pastor John talked about how you react to a changes in your path and he had a really great sermon today and I just couldn’t help but think of Matt, the entire time. 

If Vikno Bogataj hadn’t changed his path, he likely would have been killed doing that jump if he hadn’t adjusted his path,  instead he received a concussion and a broken ankle.  We have to “adjust our sails” so to speak to the changing winds in our lives and do something differently, not just lay down and die.  Things don’t always go as planned and we have to learn to adjust to the roadblocks in life.   MS changed Matt’s path but his life is not over, just life as he once knew it.   He once was a hard working plumber/pipefitter at Ford Motor Co, active in his community, father to four and husband to Cindy.  And now he’s pretty much confined to a wheel chair.  (He can transfer from chair to bed and back to chair)  His dexterity has deteriorated a lot and has a hard time gripping things (including a fork or spoon) and he tries his best to maintain what is left of his independence.  It is hard and you can’t help but wonder “why”?  Matt doesn’t want sympathy, he just wants everyone to know he can’t help it.  March is MS Awareness month and while he told me “I”m very well aware” and he wants others to know his journey through MS. 

I told him I thought that God brought him to where he is for a reason.  He is there to be a light to others and he truly enjoys the other residents.  He enjoys getting to know them and was recently voted President of Resident council, although we hear the vote was really close and there may be a re-vote. (Voter Fraud? ha ha-- Matt O for President! Making Bellevue Care Center Great Again!)  (I am not sure all the details of this, but would certainly campaign for my brother if I could)  Matt enjoys very much selling candy bars to raise money for a monthly pizza party!  He loves his pizza and diet pepsi! 

He told me he loves getting to know the other residents and he even can tell you things about the caregivers - like one of the activity girls played basketball in college.  He still has a love for people that doesn’t end and he truly enjoys getting to know people. 
He has been tired lately and even a little depressed.  He’s adjusted the best he can to a “new normal”.  He misses being an active part of society.  

My sister, Robin and I are part of a group called “IRUN4” where you are paired with a disabled person and dedicate your runs (or walks) to,  we each have a buddy!  I decided to sign up Matt for a buddy, and he was just paired with Brandon and we are getting to know Brandon, he’s already sent us pictures of a couple of runs and Matt does his “laps” around the nursing home. It may be just the inspiration Matt needs to get out there and keep moving!  

We haven’t updated in a while and Matt didn’t have a lot to say today but Pastor John’s sermon really impacted me And I couldn’t wait share that story with him and felt it was a good time for an update.  

It’s hard some days when you can’t cheer Matt up and there is no magic “thing” to say or do.  This quote pretty much sums it up:   When your heart is breaking for someone who is broken, but your words can’t reach them and your love can’t save them, ask the angels to go where you cannot. To whisper into their heart what their ears can’t hear: “We will not give up on you. Don’t give up on yourself.” — Sandra Kring

If you get a chance, stop by and see him! He’s at Bellevue Care Center in Bellevue, Room 107, it’s on the corner of Flatrock and Gardner Roads just south of Route 20. (If you turn south by Family Video it’s the next intersection) 

If you haven’t signed up for the MS Walk yet it is May 6th in Sandusky. 
Here is the link to our team - come and walk with us or donate or both! (Donations not required) All money goes to the MS Society. 
Walk for Matt O

Groundhog Day

Matt’s life now is like the movie Groundhog Day where every day sort of seems the same and just not the life he thought he would be living at 54 years of age. (Matt just turned 54). 
He has good days and bad days and the bad days he seems pretty bummed out about life.
Of course he’s alone with his thoughts while the rest of us our out living our lives, working, making a living, etc…. and don’t get me wrong, he understands that….but for him, he’s stuck in a nursing home.  It’s easy to feel forgotten, unwanted and like a burden - and he does.  He has some friends there and the staff has been good to him, but what he’s really struggling with is to find a purpose.  What is his purpose for living a life with MS, confined to bed or a wheel chair?   He has been sort of down lately and I encourage any of you reading to take the time to have a real life “Chat with Matt” and go visit.  He loves visitors. 
It helps distract from the reality of what “is”.
He is frustrated by not being able to be a “real” husband to his wife and he is angry at all this disease has taken from him….his job, his house,  his ability to see, to drive, to walk,  and even sometimes to talk.
He knows he messes things up and he gets frustrated. He says thing he doesn’t mean and means to say things he doesn’t.  
He gets frustrated when he spills drinks or food. I told him he can’t help it and he knows that too.

If you’ve ever had a pinched nerve, think about how that feels, and think about all your nerves being pinched - that’s how he feels. Some days are worse than others but the sensation to feel the grasp on a can of pop or a sandwich, it just isn’t there and he literally can’t help it.
He wanted to talk tonite….to vent….and I just let him.
I told him it sucks and there is no other way to put it but to say it sucks and I wish I had magic words to make it all better.
I told him it’s ok to be mad and hurt and all of that.
I don’t know why he got this disease, but he did and he has to take it one day at a time, even one minute at a time. 
It’s times like this that I feel helpless.
As much as I want to make it better for him, I can’t.
There is no magic wand to wave to make it all better.
I told him Matt, you can’t change what is, but you still have a lot to be thankful for, a wife and kids and grandkids now! You have had a great life until this happened and you have to focus on the positive and not dwell on the negative.  He said “It’s hard”.  I tell him I know…but I really don’t know. I have no idea what it’s like to be in his situation and I try to be compassionate and understanding and patient and kind and I listen. 
His purpose lately has been to get a pizza party at the nursing home for the residents so he started selling suckers - he wanted to sing for money but they told him he had to give people something tangible for money - and he’s raised like $70 - and it gives him something to focus on - and that’s what he needs- something to focus on. 
We haven’t done an update lately because we really try to stay positive but the reality of this illness is there is a lot of negative and I only hope that I bring a little happiness to his life and to his day.
When I left to night he said “I love you so much” and I said “I love you so much, back” and I do love him more than words could ever say - my big brother, my mentor, my friend, my hero. 

It’s a Small World After All….

We haven’t updated in a while and Matt wanted everyone to know he’s at the Bellevue Care Center, Room 107. It’s at the corner of Flatrock and Gardner Roads in Bellevue, OH, south of Route 20.  
He loves visitors!  

He told me today that being in the nursing home,  he realizes how small the world really is. He knows people that are also residents there and many of the employees -- he knows someone they know and he said “It really is a small world” and it’s just “really cool” to talk to so many people.  
What do they say, Six Degrees of Separation? (The theory that anyone on the planet can be connected to another though six or less people.)  I think he’s proved that in talking to people there!!

It’s been a bit of a roller coaster since he got settled in, while his “world” stays the same for the most part, changes are happening all around and he sometimes feels very isolated from the outside world.
MS has taken so much from him already and now he’s faced with the reality of the house he and Cindy called home, their little “O” Farm on Dining Road, will be sold.  Not an easy decision for sure, but way too much for Cindy to keep up and certainly understandable. Matt said he gets that.  Matt said “My world turned upside down”. It’s a lot to absorb, but he’s learning to accept it and while he understands it, it’s hard on the heart.  He told me “I’m trying to keep a good head on my shoulders, I had a few bad days, but trying to stay upbeat and positive.”  (Personally, I think that it’s a big reality to him that he won’t go “home” again…and that’s a tough pill to swallow). 

Matt’s had a few outings while he’s been there and really enjoyed the visit to the Trout Club. 
(He worked there when he was younger) and really enjoyed telling stories about that. 

One of the very awesome things is that they started an MS Support group last month and they will have another meeting on on June 22 at 10:30 a.m.  He said the Activities Director was the one that started it for him! If you are around that day, please come and show Matt O. your support!  (It’s at the Care Center)

All in all he is adjusting to life in the nursing home, he’s getting therapy, and said everyone has been very good to him. He really likes all of the people. 

He loves to have a diet pepsi and chat - It’s kind of “our thing” 

He said he likes the blog because “People want to hear what I have to say, I don’t really get it, but they seem to like it!” (You BET they do Matt O!)  He really loves the comments and we all will read them to him so please….comment away!! (If you haven’t done so, join our Facebook Group)