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affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
My husband Chris was an incredibly active man who had the attitude of “come on let’s do it!” His attitude to what is important in life struck me early after meeting him, and his desire to jump in and experience everything we could soon swept me along.

For most of his working life Chris ran cafes or restaurants, and was well known in the community both for his food, amazing milk shakes and ability to make anyone who came in feel valued, welcome, and leave with a smile on their face.

We had this weird set of circumstances that led us along in ways that felt like something was smiling over us and guiding us to amazing places. We just went with the flow, and I will be forever grateful that we did, as we both thought we knew one never knows when their time is up, but we still never thought it would be up so soon.

Our dream property ‘bought us’ and it became ours on May 7, 2010.

He proposed to me on 10-10-10 and planted my favourite tree – a Moreton Bay Fig – as my “engagement ring” with a beautiful plaque he had designed to be placed under it. It was pouring rain but he insisted we go out and plant it as the plaque said it had been planted that day and we laughed as we sloshed about out there doing it.

We were married on the property on May 7, 2011. We were in bliss, we were making gardens and beautiful things like maniacs and we laughed constantly and he talked non-stop about anything and everything.

In June 2012 he began to have truly noticeable bulbar symptoms (though we know there were some beginnings of the monsters presence from years earlier, in hindsight), and by August 2012 he was becoming very scared, but I was in high denial that it was anything more than something really odd that the right doctor would pinpoint and all would be well. He had never been seriously ill a day in his life, had never had blood drawn, never been admitted to a hospital, and he knew that he had very unusual symptoms that were slowly getting worse and he had never known his body to fail him at all.

After a long process of being sent to the wrong kinds of specialists, who at least performed all the usual tests that show normal with MND, he was becoming depressed, his speech and swallowing were bad, his hands were failing, and could no longer work and I knew in my heart that we needed to be referred to neurology. A friend suggested we see a speech pathologist and so on April 17, 2013 we did that and within 5 minutes she solemnly said she cannot diagnose as she is not a doctor, but that she believed strongly that he was afflicted with bulbar onset MND.

I will never forget that day even if life became a true blur for the next couple of months. She got us booked in to see a top neurologist at an MND clinic on May 23, and the diagnosis was confirmed.

Chris felt he had to ‘fight’ the disease, but sadly with the involvement also of FTD, he could never put a clear strategy together, and was even less able to follow any strategy through, he became paranoid, lost his empathy, easily angered, and morose.

My heart was slowly cut to shreds as I watched this monster eat away both the body and the person my husband had been. I tried simply to honour his decisions, even if he changed his mind frequently on many matters.

He progressed rapidly, and on April 22, at the age of 55, just 1 year and 5 days after seeing the speech pathologist and not even a full year after official diagnosis, he was granted his wings to fly free, and cast the monster over a cliff.

I cannot believe that I was given so little time with him, however I am forever grateful I allowed myself to just take his hand and run with him, as I have so many wonderful memories of the short time we did have.

Fly free and high, soaring wherever you will my love.

Katrina (Tillie)
 
That was beautiful Katrina!
I am so sorry your time together was so short but you 2 packed a lifetime of loving into those short years.
Wishing you peace
Nikki
 
Oh Tillie, that was absolutely beautiful!
Still holding your hand and sending much love!
Hugs
Linda
 
Tillie you are a wonderful person and a wonderful wife. That was a lovely tribute to your life together. Bless you and may God grant you peace and comfort.
 
Sometimes people never find the happiness you and Chris shared in such a short time. Keep remembering the good times. Love and hugs to you and know we are still holding your hand.

Debbie
 
My most sincere condolences. The only thing that keeps me going sometimes is that like you, I was fortunate like you to meet the love of my life. However short our time together ends up being. You are an inspiration to us all. All the best, tinyandme
 
Your tribute to Chris was beautiful. I am so saddened to hear of your loss. But, it sounds that you two had the love of a lifetime even though cut so short. Praying loving memories sustain you into you are both reunited again in paradise. Where ALS is vanished forever. Hugs, Kim
 
I am so sorry for your loss Tillie, and I know that Tim & my story is much like yours. As we look around our dream property we will forever see our husband's love is all around us. The hardest part about getting to know the people on this forum is feeling the loss of another friend, when one gains their wings. Thankyou for sharing so much with us. Your sister and friend.

Paulette
 
Wonderful, Katrina!

Max
 
Tillie - such a beautiful story and wedding picture. Brought tears to my eyes. I think u have been such an awesome caregiver. Thanks for sharing so much of yourself. I wish u peace.

Trina
 
Katrina,
Your story is a beautiful tribute to Chris! He fought the monster with all of the energy you had to be his warrior in the battle! Truly a humble, strong, and faithful wife, friend and defender against the disease! Thank you for sharing your friendship with us, for sharing your story and for your incredible care! Hugs to you and we're here for you!
 
After our wedding ceremony, Chris got on the tractor, I got on the front carryall, and we headed down the bottom of the property with our photographer for a private photo shoot.

We put our wedding together just how we wanted it to be, he was amazing at craft and insisted on us making by hand all this stuff and he just seemed to know how to do it all!

The attached photos, are of us on the tractor (hey we are in rural Australia ya know mate!), and then our all time favourite photo from that private shoot.

Between the photographer and everyone doing happy snaps, we ended up with over 2000 photos from our perfect day!
 

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Tillie, that is a beautiful tribute to Chris. You guys look so happy in the picture. You are a wonderful person and I hope you will find much peace.
 
SO saddened to hear of your great loss. May God bless and comfort you during this difficult time. What a beautiful tribute to Chris. It was wonderful seeing your wedding pics. Beautiful. Thank you for sharing your story. Hugs
 
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