a quick question

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snowball

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Apr 11, 2005
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Hi everyone

This has been bothering me for awhile, my mom (Arlette) has the bulbar form of ALS.
And I also alway's read the post's on here, and I have also written in here as well talking to you all about my mom.

It might be silly I know, but the thing that's bothering me, as we all know what the eventual outcome of this terrible disease is. Is that later on do the posts that you've written about the person that u love come back to haunt you?
I guess maybe this is for Carol, or anyone else out there who has lost a person and still comes to the forum to help people.

I love my mom so much

Sandra
 

trisha p

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Feb 16, 2005
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Hi Sandra,
My brother is thankfully still with us so I cannot give an answer about how I will feel at a later stage in this journey but to me, I think that the posts have the potential to have more than one affect. Perhaps Carol or TBear can give a better answer, but to me, I think the posts can serve to remind you of the good memories and the bad ones that come with dealing with ALS.

We cannot erase the journey we are on and after our loved ones have passed our lives will never go back to normal. We will find a new normal but we are all changed by this experience nevertheless. I hope that when I look back on the posts, I'll be reminded of the love and support of friends whom I have never met that gave me support when I needed it, answers when I had questions and who listened when I talked about my brother, my frustrations about the testing process for ALS, etc. and whatever else I might add to the forum over the months and years. I know that some of the postings might remind me of the pain and sadness I felt when my brother lost his ability to do yet another thing, but I also hope it will remind me of the strength I received from people who knew what I was feeling because they were feeling the same thing. I think it will make me want to continue coming back to help others as well. It wll remind me of my brother's spirit of courage and the tenacious way he is confronting this illness because to me, I see the same courage, the same tenacity in every person I have met with ALS.

I hope that when I reread the postings, they will remind me to live my life every day honouring my brother's memory, and the life he taught me to live - to really seize the day, never wait for tomorrow, to claim my future and appreciate the love of my family and friends - things I always knew to do but never knew how to externalize until I saw how he does it on a day to day basis. I think I will be reminded of how proud I am of my brother and the reasons why I will always look up to him.

Well, I am getting all sappy and starting to ramble on so I'll stop there. It's clear that you love your mom very much. Just remember that while there will be bad memories that you will be reminded of that might bring back the sadness, you will also be filled with all of the good ones. And with the good ones, I think you can be blessed as well. If I'm way off here guys, I apologize but I'm an eternal optimist, even through all of this. I think it's what gets me through the emotional days though so it can't be all that bad to think this way.

Love to all,
Trish
 

PALS Mike

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Oct 13, 2004
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The eventual outcome to Life and Living is our own Mortality.
We're all going to die someday.
Unfortunately, a stranger in a white lab coat has given those of us diagnosed with ALS, a timeline.

To mourn the loss of someone is fair and justified. You love them and miss them.
Just make sure your Mother knows how much you love her (I'm sure she does) and when she passes on...
Her spirit will ALWAYS be with you to give you the strength and courage to go on.
 

Carol Deboer

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May 7, 2003
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Hi there,

I am comforted to go back through the years and read the posts that I have written about Henry and our journey with this als thing. I think that it is good to read them and I smile and cry over some of the things that I have posted. It is really theraputic in some ways. I have not closed the book on any of this, and I doubt that I never will. I will always try to help someone out who needs it. That is what keeps me going. I have made many good friends here and for that I will be eternally grateful. I have learned so much from my friends here and I know that you will too. Your mom is so lucky to have such a warm and caring daughter and a loving family that gives her so much support. You can only keep her comfortable and happy now. With each new modification comes a sense of loss. However, remembering how you cared for her will bring you peace someday. I know. I live it each and every day. We gave Henry the best possible care any one could ever had hoped for. He knew that, and we knew that. I think that you will be okay, just remember that with each new day, comes something new. Tackle it, and just do the best you can. It is a very difficult diesease to live with, but I find that the Cals are a very special bunch of people. I miss Henry so much, but I would not want him back the way he was. He suffered terribly, as did we. Now it is time for us. That is difficult too, because you go from 24/7 care to nothing. We are finding a new normal, but it takes a lot of time to get there. Our suffering is still fresh, but my kids and I will go on, and we will do the best we can. As will you. My heart goes out to you. My heart is broken and somedays I think that nothing will ever heal it. Then I look at my kids faces, and our gardens and the things that meant so much to us and it brings a smile to my face. Just live for the moment. You cannot change what this als thing will do, but, you will be alright. And yes, I love to read all the posts and messages. It was part of our lives and will be forever. To remember them is painful sometimes, but nonetheless it was what was going on at the time. We are all here for you, and we will keep you and your family in our prayers.

Stay Strong

Carol
 

snowball

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Joined
Apr 11, 2005
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thanks so much for replying back,

I think maybe I understand what your trying to say to me, maybe I'm having a hard time with it because I look at my mom and she seems so fragile that if I blew on her she'd do a back flip.
And also maybe because this is so new to her and I, she was just diagnosed about 7 months ago.

I also have figured out that being the ripe age of 40 I'm really not as grown-up as I thought.

My son is having a very difficult time as well, Kurtis is 8 and the sun rises and sets with my mom. They have alway's been very very close with one another. Kurtis has read books in his age range about grandma's and grandpa's with ALS, and at times he's very sad.

Yes I must try and be brave and grown-up now.....hmmmm how does one go about that?

Well enough of my rambling

Sandra
 

Carol Deboer

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May 7, 2003
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343
Hi Sandra,

Who says you have to be grown up? I wish that I was 10 years old again and my Mom and Dad taking care of me! However, I am not, but some days still feel so little and needy. Its all relative I guess. You never lose that need to be taken care of, believe me. Your son will have such insight to adversity at such a young age. He will grow up to understand what uncondtional love and care is all about. Try to be brave, but if your not, well that is okay too. It is a very scary time and hopefully you will come through it a stronger woman. I did. Anyway, have a good night and I will keep you in our prayers. Hugs to you all. xo

Carol
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Keep posting, Sandra.

You are so full of love for your mom...your posts could never come back to haunt you, they'll be there as a sign of a daughter's love.

As a guy with ALS, I would love the fact that one of my children would be so moved by my condition, that they would seek out a forum and write for guidance and comfort.

God bless you Sandra, and your mom!

My 2 cents...
 
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