Saturday, November 26, 2016

This and that

It was a fabulous weekend.  Actually a fabulous week.  I love having all my kids under one roof, and listening to the three of them bicker and interact the way they typically do. I heard a lot more laughing than I did arguing and that pleases me to no end.  The older they get the more they get along.  Its comforting.
Thanksgiving dinner at my brother-in-law and sister-in-law's house.  Fri-giving here at our house. Family events filled with immediate and extended family, all related to us somehow, all getting along and loving each other and laughing.  The bellowing of deep teenage boy voices was something new. All of them have grown up so much.  Obviously my physical perspective has changed, but I found myself looking up a lot.  Every one is so tall!  We ate such delicious food on Thanksgiving and again on Friday.  It was important for me to have a family gathering at our home this year and the people who love me made Fri-giving happen.
Tonight my three kids, along with some of their friends, will go off to the movies.  I love that Ean is choosing to spend his birthday night with his sisters.  Though there are four years between Sarah and Ean, somehow that gap is closing and they have some similar friends.  It is lovely.  My kids have each other.  They will be okay.
Tomorrow morning Sarah heads back to Massachusetts.  I know she will be back for an extended stay in three weeks, but is is strange that I am already missing her?  I love listening to her stories about her new friends, her classes, and her life experiences.  On Friday I tried to spend a little time listening to what she was telling others about her college experience, and I was pleased to see and hear that she is really happy.  Sometimes I don't know if she is just telling me what I want to hear.  I guess every parent might feel that way at some point.

I wanted to be able to set up for Fri-giving on my own.  I wanted to take out paper products, and put things away, and set up by myself, like I used to.  I always got so much joy from setting up for a family event.  This time, I really needed the kids and Adam to help.  No one complained, and everyone was helpful.  I don't mean to sound unappreciative.  I am.  Really.

Here is what got me.
You know how you have a thought in your head, and your body acts upon that thought.

Me thinking before ALS: I want to put out the fancy napkins.
Me acting on that thought before ALS:  I walk to bottom kitchen drawer and take out fancy napkins.

Me thinking during ALS: I want to put out the fancy napkins.
Me acting on that thought during ALS: Gillian can you please take out the fancy napkins.  In the bottom drawer.  Yes, in that drawer.  In the back.  Probably the whole package.  Put them in the napkin holder.  No, the one on the dining room table.

Almost every single thing I want to do requires me telling someone, or give a direction.

This morning I fell. I haven't fallen in a long time. I tried to get out of bed too quickly and rolled right off the bed.  Crashed my head into my nightstand and landed on my side.  I called out for help and Sarah came running.  I HATE when my kids see me in such a vulnerable state.  Unfortunately they are getting used to it. Sarah was unable to get me up, so she went and got Adam.  He is so sweet.  Came in saying "honey bunny what happened?"  No panic, just reassurance.  However, he could not get me up.  So Sarah and Adam worked together and got me up.  And it was difficult!  I have no leg strength so when they lifted me up I could not contribute to the process.  My feet do not hold any traction.
When they finally got me seated in my bed, I immediately could see the look of concern on Adam's face, and then he said pretty much what I was thinking. "This is a problem if I can't get you up by myself."  It upsets me so much when I see him defeated.  He has been working so hard to be my rock, but I know that this is taking its toll on him.  He wouldn't be human if it didn't.

Later in the day as we were discussing the falling incident with my Mom, we were brainstorming some ways to help with the process of getting me off the floor if and when something like this happens again.  As we were brainstorming, I realized that there is no reason we have to reinvent the wheel here.  I will call my social worker at the ALS Association on Monday and see what others have done in this situation.  I will see if they can send a PT to my home to help assess the situation.  There are answers out there, we just have to find them.  We are going to problem solve.

I had a great week.  But at this point in my life everything comes with challenges.  I am working on seeing these challenges as accomplishments, as I talked about in my last blog post.  But that won't always be the case.  Trying to take it easy on myself.

Live to love.  Love to live.





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