There can't be a God.  If there is I'm convinced he's one lazy sick egotistical entity that just doesn't give a damn.  I miss you so much it feels like someone took a butcher knife and gutted me.  I cannot believe the journey we took and how horrific things turned out.  I will feel forever blessed to have been chosen your son.  It was unique to say the least but to me it was profoundly normal.  I never knew any other life.   I can still see all my friends when I was little asking if they could play with your crutch's or your wheelchairs or the electric scooter.  It's ironic they envied the illusion while there were times with great guilt I envied their life.  Your sister thinks I need to get rid of the ramp as it will really help me emotionally "get on with my life"  LOL... like she would know.  I walked those ramps my entire life with you.  They are an extension of our life together and I'm not ready to give that up.  Advice from your odd distant family is vomit worthy at times.  These are the same fools that sat there when I was 5 serving you your meals and not one of them got up to help.  As far as I'm concerned they can all go to hell with their advice.

 

I can't believe a year ago our nightmare began.  As usual our nightmare was compounded.  I lost every thing in a matter of weeks.   We didn't get to just focus on "cancer" we endured complete and total collapse.   I remain puzzled at how cruel it's all been.  I have no enemies but if I did I wouldn't do to them what was allowed to happen to us.  I can never forgive the God you relied on to give you hope even when life had already dictated to you how cruel it could be.  I get it.  This life was so horrid you needed to believe that in another life it would be magical and perfect.  Otherwise it would have sucked to think this was all there was.  I'm sorry but I have no faith in that God at all.  It was too much. 

 

I miss you so damn much I pace the house because for over 40 years my daily routine was to check up on you.  I've pulled out dishes to serve you and caught myself and all of a sudden it will hurt so damn much I want to die right there.  You said to me when I was a toddler I use to stop playing and say... Mommy? and as long as you responded with even a simple .. what?  I'd say ok.  and continue playing.  As long as I knew you were OK.  How do you take that life time and suddenly end it? 

 

I can't believe how you were taken.  Considering all you'd went through it's just so wrong.  I can't get that image out of my head when you finally left.  Hours of labored breathing and then in a snap you were gone.  It was as if someone took a camera and slowly panned out and all of these hidden emotions came crashing down.  Every bit of the pain and all the fear not from just the 9 months of hell but all the years.   People always saw us as strong.  We put on a great face but I had no idea that all those years of pushing asside dispair would come back.   It blows my mind when I will recall certain events that took place and what we did to face them.  I guess we would have collapsed years ago had we dwelled in it.  I figured that since we made it through I was done with ever having to deal with the past.  Little did I know they've all been kept in a secret little file cabinet inside of me.  I can't answer the question.. .How did we do it?  or even How did I do it for all those years?  I don't think there is an answer.  You take it and keep taking it and keep taking it.  When it's finally over you are stunned at how quickly it's all done and over and you realize no one will ever understand that for the first time in my life I was bound in a corner and could not fix things.  I had to watch and accompany and the whole time I knew it was a losing battle.  How can a God of love and compassion allow that much hell?  I want you back.  I could accept it was your time had you been granted at least a little dignity in life.  You'd paid enough when it came to physical pain.  I hope you weren't scared.  I hope you are in a perfect world and you are amazed at how much you were loved.  I would honestly give my life for you.  I think some people only say that but when faced with it they would chicken out.   

Last week I really needed to talk to you.  Oddly it was the first time I really really really realized those deep conversations are done and over.  I never allowed anyone into my soul and thoughts like I did you.  You weren't some Socrates to me with any answers.  You were my sounding board.  To just release things knowing that you'd never share those things.  I think you always knew somehow I'd find my answers and in that you found pride.  God I miss that and can't believe all of that is done and over.

 

I say this every day to you but I'm gonna say it again .. I am so sorry you were one of the few chosen to endure so much in life.  I don't get it.  It's beyond unfair.  I hope the last 9 months I brought you comfort.  I gave all I could.  I begged your God to please give it to me.  Let me be the one to suffer and die. 

 

It's been 3 months and there are days it's still a complete shock to me.  We survived so much together.  I just can't believe you really are gone.  I'm now using one of the upper cupboards in the kitchen.  It's weird using them for the first time in my life.  In fact I forget I have placed a few dishes up there.  I feel like I've been reborn into an empty world in the worst way.  I've got no one.  If I were to die right now it wouldn't matter to any one.  I don't really care about that.  I just want to be with you.  Sometimes I feel you around me other times I think I'm just playing a game on myself to make it through.  I love you mom and miss you so freakin much.

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Comment by Sandra Nichols on June 20, 2012 at 3:00pm

Mark, I am so sorry for your loss and what you are going through. I lost my mother, my best friend, about 7 months ago and still can't face the reality of it. I lived with her for over 10 years and the last year is all I remember. Cleaning up after the cancer results and the stroke results, and everything else - not thinking I could continue but, not wanting it to end. I have my dog and my sister. Without them I'm pretty sure that I would not want to live. My fear of death is totally gone, now. If there is nothing after this, then I will be released from the terrible reality of this place and if there is something where we are reunited with our loved ones, then again, death is ok. I alternate between hope and just plain anger. All I can say is your mom would want you to continue on and you should celebrate her memory for a few minutes each day. Please just take one day at a time and hand around with people you can find that have some common experiences with what you are going through. I can say that after 3 years after my mom's loss - things will have to be better for me to stick around. They say 3 years is a good estimate of a recovery even though I know they will never leave our hearts and minds and our mom's losses will always affect the rest of our lives. I am crying at work as I write this. Vent all you want on this site. It is good for you.

Sandra

Comment by Mark on April 3, 2012 at 12:03am

You know, it's so true.  I can't imagine any different journey then what we traveled together.  We talked about it often.  There is a chance I would have went my own way as most do.  I said at her funeral that for all the challenges the gift we got was our unique relationship and my challenge to every parent present was to go home and see if it's possible to foster that type of relationship with their children.  Who knows, we may have been the lucky ones :)

 

Comment by Kathy S McBee on April 2, 2012 at 10:08pm

I've been considering what to say and I really appreciate your response. Every parent wants happiness for their children and I'm hoping you'll find yours, too. 

I was blessed that I had about 40 years of good health before I got hit with chronic illness. That time was spent growing up, being responsible, balancing others' expectations and my own. It was a 'normal' life as most people see it. The real 'love of my life' showed up ten years later. He knew I was chronically ill and loved me anyway. He wasn't what my parents had ever envisioned for me and yet he was a perfect fit. We had all kinds of issues to deal with, tested each other's patience, and still couldn't live without each other. My guess is that our relationship wouldn't have been so unique without the challenges.

In re-reading your original post, I wonder if you would have been so close to your mom without the crutches, wheelchairs, etc. I've reflected on my relationship experience, and I was always told that 'it's as easy to fall in love with a rich man as a poor one.' Yes, life gives us complications - and I was offered the opportunities to fall in love with rich men - and ended up with a poor one. For me, it wasn't as easy to love a rich one. With my poor man, I was totally honest, and he was totally honest with me. We wouldn't have had that if we'd been working the angles - like rich folks.

Life is complicated. I can honestly say I wouldn't give up one frustrating, exhiliarating moment with my poor man for anything. I'd guess you'd say the same about your mom. I think that's where God comes in to our equations. From my experience, God doesn't bow to human logic, as good as that can be, and calls for something much different. 

For what it's worth. ;-)

Comment by Mark on April 2, 2012 at 7:22pm

Even before she passed I knew what my moms desire was for me... Happiness.  There are goals I have set for myself where I see the outcome providing happiness  :)  It's still very hard to find the energy some days but I'll get there. 

 

Your comments about "Why not me" is very much like my mother.  I never wanted to take away any type of hope or personal clarity she had about her life so I would smile over comments like that.  Between you and me I'm not sure so much if that is really an answer but maybe more of a self medication to acceptance.  Some are granted things in life including health while others struggle.  I also have to be honest I don't think God allows everyone a fair and equal choice or as some say.. "free will"  Some are handed a simple given like a geometric equation.  You can't change it and you can't hand it back.  You are taunted with make a choice around whats already given and the wrong choice for that person can have catastrophic choices while another has complete access to every angle with little negative repurcusion.

 

Thank you for your comment :)

Comment by Kathy S McBee on April 2, 2012 at 9:04am

Shock. Pain. Anger. Unfortunately, we deal with those after we lose someone we love. For all the questions that come with those deep feelings, often we find no answers. As I've been dealing with my feelings, I keep hearing my parents' mantra from my childhood: "Life's not fair."

I can't give you answers either. All I can tell you is a little of what I've found. You see, I live with chronic illness. Some time after I started getting answers about what was wrong with me, I realized that I had accepted being diagnosed and hadn't asked the question that, it seems, almost everyone asks. Musing, I thought, OK, I'll ask it: "Why me?" The answer came immediately: "Why not?" I knew there were many more people suffering in the world with the same conditions - and worse. There was nothing special to make me worthy of exemption. Frankly, I also realized that God allows us choice - that Adam and Eve chose to eat that forbidden fruit so they would know good AND evil. As I see it, that's why we get both - and, in each of our lives, there are times we don't choose the good even though we know better.

As you struggle, I hope you can keep in mind what your mother would be wanting for you and try to 'set your course' in that direction. With the closeness you had, I believe her 'voice' and wisdom will be with you. 

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