Sweet Vicki, my mom has ALS

[jbaiza]

Well we are in the ending stages of ALS, my mom was diagnosed almost 5 years ago. my mother in law just passed away from lung cancer. And it's just a tough time all around. Watching your mother deteriorate right in front of your eyes. I'm trying to remember every question in the world I want to know the answer to before it's too late. I watch her all the time while she takes her naps during the day and just cry. Wondering how am I going to live without this wonderful person who brought me into this world. Her nick name is "sweet vickie" and I got it tattooed on my arm and she used to kiss it every time she saw it when I would come over. She can't do that anymore. She can't move her head, arms, lips. Anyway I just wanted to say I am so sorry for everyone that is going through this disease, and the people around them. If you ever want to share your stories with me I would love to hear them. Just hearing what other people are going through makes me not feel alone. I also wanted to share a poem I wrote for her. I want to read this at her funeral service, but I don't know if I will make it all the way through. So I will write it out here:

You gave me life, never ending love
Hope, acceptance, heartache and love
They say "mothers are angels sent from above"
Why are you slipping away so fast
I'm trying to find ways to make our memories last
Life is unfair we are taught from the start
But in no way does that help our heart
Beautiful green eyes, angelic face of love and care
Beautiful Sweet Vicki with red lipstick and blonde hair
Three loving daughters made your life complete
An endlessly loving husband, a treehouse to retreat
How on Earth do I let you go
The answer to this question I will never know
I wish you the safest travels to where you are going to be
Rest somewhere beautiful where you can be free
And when you get there run, dance, sing, and play
Because I promise we will join in with you soon someday.

I love you mom. Always and Forever

 

[Blubear]

K THAT WAS BEAUTIFUL! It made me cry. I think of my dad who is still doing okay with one year into this ugly disease. As a child of someone who has ALS it breaks our hearts to see our parent suffer in anyway. They were always there for us, so strong and reassuring. Now we have to watch them go through an unfair hell. Its not a fair disease! I HATE IT! I remember when my dad came over with my mom to tell my daughter and I about his diagnosis and I didnt even know what ALS was. I just will never ever forget hugging my dad, shaking and crying "No no, not my daddy, not my daddy"(all of a sudden I am a little girl again) and he sobbed. I could feel it in my arms. My dad does not cry. To see him scared, or in any way fragile just kills me. I love him so much! I think about that day often. Horrible day. I will maybe write a poem some day too, but I know myself better than to think I would be strong enough to read it at his funeral. Maybe by then I will be ready I dunno. Either way, you have written a wonderful tribute to "Sweet Vicky"
Hugs, Kari

 

[Katie C]

What a beautiful tribute... Here's what we've done to have things read at funerals: nobody goes up alone. The agreement is you take someone you trust up with you, and if you can't make it, that person finishes the reading. Sometimes it's just enough to have them there holding on to you.

Hang in there.

 

[belladonna]

that is so beautiful it made me cry.....I am so sorry you have to be here.
I am glad you are making the most of being with her.
I am so sorry you have to be here, but I am glad you found this place
b

 

[handinhand]

I think that if my daughter wrote a poem like that about me? I would want to read it? Have you let your Mom see it? How very special you are and I am hurting for you at this time .. I hope you can feel the love from this forum for you and your Mom. Hugs, Linda

 

[Deb A]

Those were such heartwarming words. Thank you for sharing them with us all here. My thoughts and prayers go out to you, for these years you have witnessed the suffering your mom has been going through. She is blessed to have had you by her side all this time, giving her comfort and strength. My mom was diagnosed with ALS in Oct. 09 and now can hardly speak and lost a lot of use of her hands and legs as well. I find that one of the worst feelings i have is hating to see her suffer and feeling helpless as not to be able to make her better. How these three words, ALS, could changes the lives of our whole family this way, is just so sad. Take care and know your mom feels your love through the words you shared with us all.

 

[CAHPAH]

My heart goes out to you. As the father of two young adult daughters going through the same thing with their mother I wish with all my heart you could be spared the experiance you are going through but your mom is very lucky to have such a caring daughtr and I am sure she is very proud of you. I don't even know you and I am proud of you. God bless and give you strength.
Jim

 

[tdamess]

beautiful touched my heart so

 

[jbaiza]

do you think I should read it to her before her funeral?

 

[tdamess]

very much so YES ...after my mom died the song from celine dion called mama oh how i wish she could of heard it

 

[pepsiman]

I had to get up and shut my office door, the tears are running down my face.

 

[BarryG]

Jenny, thanks for the beautiful poem. It is a great tribute to your mom.

 

[Just J]

A very lovely tribute. I think you should share it with your mom and read it at her funeral. My father died suddenly 18 months ago (not from ALS), anyway, I wanted so desperately to speak at his funeral but I was too consumed with grief. I so regret that now. He was a great man, everyone loved him, but it would have been nice to hear it from me.

If when the time comes, you don't think you can get through reading it, maybe you could have it printed on nice stock and framed for people to view at the funeral home?

 

[Blubear]

Or, maybe have it printed in the programs?

 

[indigosd]

Such a lovely tribute to your Momma! I soul hope that you will read it to her and then print it out so that she can see it! How are all of you today? hugs, Kay Marie