Welcome

This blog is about a new walk with my husband Rick & I since he was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease or MND (Motor Neuron Disease) on February 1, 2008.

This blog was started as a way to keep our family and friends and anyone else interested in our battle with ALS updated.
So as you read this blog please keep us in your hearts and prayers.

The blog starts from the most current to the oldest entry. Rick has started to blog now also as of April 1,2008 so this site has become officially "our blog".

My dearest husband Rick passed away on August 13, 2010,
2 1/2 yrs after diagnosis. Now I have to learn how to walk in the courage, strength and bravery that he did in fighting this disease. He promised me he would be waiting for me in eternity on a park bench. Together Forever!

Sunday, August 22, 2010

Joan here..."Day No. 9"


It is the ninth day today since my Ricki has passed. Nine days full of blur and numbness and tears beyond what anyone could imagine.

I started this morning by waking up and looking out the big window to see a big bright beautiful morning sky filled with newness and then with so much sadness as I miss my Ricki so very much. I have not taken down his hospital bed yet so every night I have found comfort in just sleeping where he slept. Covering myself with his blanket. Laying my head on his special boomerang pillow. Smelling his scent.

As I lay feeling the circulating mattress moving under me I lay there in one spot trying to imagine how Rick must of felt laying there in one spot for hours at a time not moving anything but his head unless one of us did it for him. All he could move was his head from side to side. He could no longer even move it forward or backward. I just start crying as I relive that image in my mind. I picture him being hoyered, rolled over,washed, being dressed, teeth being brushed, sipping on the little bit of liquid that he would even drink and a thousand other images and memories that are being played over and over again in my mind.

How helpless he had become at the end of this disease.Then I think about how I could have and should have done even more for him while he was alive. Thoughts of I should have hugged him more... should have...chould have...and the list goes on and on. I am sure that this is all the standard torment that comes to a person after losing your loved one.

Rick's uncle Keith flew down here on the day of Rick's viewing and stayed with me until yesterday morning. Rick had phoned him a day before he passed asking him to be the master of ceremony and read his Eulogy. Uncle Keith was my constant in the fiercest storm of my life. He steadily and carefully each day attacked all the demanding decisions that come with the planning of a funeral. We laboured over each detail. During the time he was here I got to pour out my grief, frustrations, and anger and ask him many questions about "are these feelings normal?" out to him daily. I mean pour not just sprinkle!!!

He himself lost his wife to ALS. Aunt Christine was our aunt by marriage so the disease was not a inherited one. Just the odds that he married someone who would develop ALS. She passed just over a year ago so Uncle Keith knew the walk only to well. He is still dealing with his own grief of losing the love of his life. Rick's wisdom of choosing Uncle Keith was, as I experienced this past week , more than for someone to take care of being his master of ceremonies etc. Rick in his wisdom knew that Uncle Keith would provide me with a much needed daily comfort of strong shoulders, soft spoken gentleman, and most important at the time he is experientially wise.

It would take pages and pages to really write down and articulate all the feelings and thoughts that I have been going through up to now. I think God has placed in our bodies a special way of building some type hormone or inner chemical release to help with such a time as this. I have felt quiet gentle tears rolling down my cheeks, I have felt groans of anguish and sobs gush up from my inner most being as I would release the sorrow and pain of the moment. Then I also have felt where a numbness would take over as if my emotions were dead and I would draw back from what was happening and go deep inside of myself. Sometime I can be around lots of people and then the next minute I have to go by myself to get centered again. I could never have imagined these kinds of feelings. They just come in waves and in no particular time or order. I try to let them just happen and let myself follow where they are leading me right now.

No matter who is around me when I sense I need to be alone I just go and take a few minutes to be alone with my thoughts. I usually pick the tangible spot to go to where Rick said he would be in spirit for me. I have found so much comfort in knowing that he picked the first spot right here in our back yard. He gave me another one when the time comes when I will no longer live here.

Right now, it is like God's very own creations are a very special gift to me and are working together to bring comfort and healing... the winds, the birds especially the hummingbirds (Rick's favorite), the sun rays, the gentle breeze will suddenly appear out of no where and surround me at that moment of desperation that I cry out to God to be with Rick. I miss him so much!

A woman will understand the pain when I refer to the "pulling down or bearing down from deep within" one feels when going into birth labour. That is how one of the pains feel when the wave of mourning comes over me and I have to go alone to release it. I am giving birth to a new life and reality of not having my Ricki at my side as I once knew it.

Yes, I know my Ricki will live in my heart forever and yes I will some day be with my Ricki in a very new way but right now that doesn't always bring me comfort. There is such a letting go of how our life was together here on earth, the dreams, our future of getting older together, sharing those morning coffees together and a million other things.

From the moment Ricki passed away until this very day I have been surrounded by loving caring family and friends. My sisters have been taking turns being here with me. Right now my sister from Abbottsford is here helping me. Because of all the people coming in and out before and after Rick's viewing and funeral there has been so much clean up and organizing. So many people brought us food and beautiful flowers. I can't focus longer than a couple of minutes at a time to really get anything done.

I will try and muster up the courage to write about my husband's viewing and funeral as time goes by. Right now I am living my day minute by minute never knowing if the next thought will bring me just a tiny ripple or a big wave of emotion to flood over me. Everyone asks how are you doing? I am not sure how to answer that. The one thing that has kept me from being swept into sea is my belief in the Love of God and everlasting life and I WILL be with Ricki once again...Together Forever!