MSA Awareness Month

March is MSA awareness month.  For those of you that have followed my blog, you know that my mother died of this disease in 2009.  I will say “probably” died of this, because one of the hallmarks of MSA is that it is so hard to diagnose that some people never really get a full diagnosis.  Mayo clinic said she had it, and I figured they were pretty good authorities.  I have been posting pictures of my Mom, not too long before her death on Facebook.  Doing so, has brought back some unpleasant and not so unpleasant memories of those few years.  I didn’t take any pictures of my Mom as she struggled through her final months, as some people did of their parents.  I am glad I didn’t, actually.  Not to mention, she would have never allowed it anyway!

But the point of all this, aside from wanting to blog about MSA for the awareness month, is that when someone dies of a disease like this, you never really get over it.  Not really.

Memories of what happened day to day and what happened the last days of their lives come back to you at the most odd moments.  Dying isn’t always as picture perfect as it is on tv.  It isn’t a misty water colored memory, as some lead you to believe.  Its pretty brutal stuff.

Truth be told, I didn’t hang around much while my Mom was dying.  My Dad couldn’t stay, he was so upset, so I drove him around, took him to my house, etc.  I sat with her, came in and talked to her, but my husband, my sister and her brothers and sister did most of the sitting.  This isn’t something I’m proud of, to tell you the truth.  I wish I could have been one of those people that sat, holding my Mom’s hand, telling her it would be ok.  Well, it wasn’t ok.  She knew it and so did I.  She struggled at the end, cried out a lot, pulled at her legs and wept.  She didn’t want to die.  Was she afraid to die?  No.  But even those most prepared for death aren’t ready to leave their loved ones.  I had a hard time because it was like she was trying to tell me something over and over again.  But her ability to talk had gone and she couldn’t let me know.  I talked to her finally and told her that she was dying.  Nobody had bothered to tell “her.”  They told me, my Dad and anyone else who would listen.  But they didn’t tell her.  So I did.  I asked her if she understood.  She nodded yes.  She was calmer after that, much calmer.  It was time to stop fighting.

But, I still wonder what she wanted to tell me.  Did she want to tell me that she wasn’t dying, to help her?  I knew she couldn’t swallow.  I knew she couldn’t eat or drink.  I knew she wasn’t going to live.  I asked her if she wanted to go to the hospital.  She shook her head no.  I asked her if she was afraid to die.  She shook her head no.  My husband said that he thought she wanted to say so much to me as she passed and just couldn’t and it made her crazy with sadness.

I won’t know, this side of eternity, what she wanted to say.  So it will haunt me.  Was she upset I didn’t stay by her side every minute?  Probably.  I wasn’t there when she took her last breath.  She wasn’t alone, but I wasn’t there.  The one person that should have been.  Something else that will haunt me.

I had a dream Saturday evening.  To preface, I have dreams like this often.  They aren’t like dreams where you just “dream” about someone.  They are actual visitations.  I know this doesn’t hold with my beliefs, but it happens.  My Mom has visited me often.  But this time, it wasn’t her.  It way my Grandma.  Grandma has been dead for 8 years.  I asked her why she was here.  She told me straight up that she was sent to tell me to stop worrying about things.  Leave it to my Mom to get exasperated that I wasn’t listening to her, so she sent Grandma.  She was there clear as a bell.  I was walking down the hall of a building and ran into a woman and she turned around and it was Grandma.

I know I’ve blogged about this before, but all this MSA stuff reminded me of it.

Not very poetic.  But what is on my mind.

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