Friday, February 27, 2015

Today I got my appointment to establish care here in my new state.  It will be towards the end of next month.  I wasn't prepared for the emotions that came with that appointment!  I felt something like I did when I was first diagnosed.  I just felt sad the rest of the day.  I am not sure why.  After all, I've been through this.  I am feeling increasingly weaker in my arms.  Especially at night, when I tend to type these blogs, I can tell my right arm is much weaker than it was just a month ago.  That scares me.  So, I guess, I am fearful of what I may find when I go to this appointment.  Sigh.... It all begins again.

Saturday, February 21, 2015

How do I give in?

I was talking to a dear friend by facebook tonight who asked me how I was feeling. I responded that since it was her, I would be honest.  I've just not been feeling well at all lately, but that is to be expected.  Oh, I am not depressed. I truly AM happy in those pictures I post, but I am fighting with someone through all this.  MYSELF!  

My arms are getting much, much weaker and to lift my food to my mouth feels like bricks.  To lift my drink is getting so much harder and well... I just haven't found the way to let go and let someone help me.  I am losing so much of myself- it feels like watching myself slip away and I don't like it. Who would?! 

I am starting to see what babies must feel like when they realize they can do something for themselves but their Mama wants to do it for them a little longer.  Only, I will not get better at holding my "bottle", I will just get weaker until I can't possibly lift it at all.  It greatly saddens me that I will become so dependent on those around me.  It's as if I am going backwards in time, to when I was but an infant.

I need help but how do I let others do so? I just don't know.

Thursday, February 19, 2015

My Mama leaving after being with us nearly four weeks was hard!  I have really missed not having her right there with me. 

I do however have excellent news!  Someone, a total stranger no less, donated, yes DONATED a handicapped accessible van to us!!!  This is still amazing and overwhelming to me!  It was about a 14 hour drive from our house, so off to Idaho we went.  The sweet woman that gave the van to us suffered the loss of her husband just a few weeks ago.  He is now free from ALS, in heaven.  I feel like this woman will now be my friend for life.  What a blessing she has been to me and to my family.

I am typing this blog from a motel room.  We will be back home tomorrow night.   I will be thrilled to be back in my bed.  I am physically exhausted from this trip but emotionally, so very overwhelmed and full of gratitude!

God is so good!

Monday, February 16, 2015

My Mama has been visiting for the past four weeks. As of tomorrow, it comes to an end.  It saddens me to see her go.  I can't help but panic a bit as she's 81 and me? Well, I'm dying.  I feel as if I won't see her again here on this earth and that gives me great sorrow.  

I can thank God though that I have something else, something AWESOME to focus on!  Someone, a complete stranger, is donating a van to us!!!  We will drive about 14 hours to pick it up in Idaho.  I am so grateful, so incredibly overwhelmed at how God loves me.  The van belonged to a man with ALS, who is now free of it, in heaven.  I heard of it through a group on facebook.  I am just amazed!  God is so good.

So, as I cry tomorrow as I leave my Mama at the airport, I will thank God for His goodness to me!  

Sunday, February 1, 2015

I am so very happy that my Mama is visiting us.  From the moment she got here until she leaves, she will have been with us one day less than 4 weeks.  That is such a nice visit and yet, I am fearing the day she leaves already!  She's been here over a week now, and I already feel like I am in countdown mode.  I hate that I do that.  I need to just enjoy each moment we have.  

My Mama is so precious to me.  I was always very close to my Daddy and those who know me well, know I was a typical "Daddy's girl."  That my Daddy has been in heaven since 2008 still does not seem real.  My Mama is responsible for me being so close to Daddy. She taught me to be close to him.  I have done the same with my children, and my own daughter is the kind of Daddy's girl I was.  It's so sweet to me.

I digress.... my Mama is also very close to me but I must say it has become more so in the past few years as I have grown up, have children, and especially since Daddy died.  My Daddy and I used to talk daily, sometimes several times a day.  I now can't imagine not talking to my Mama daily.  I hate the days where I forget to call or something happen that I can't.  It bothers me greatly, because I know that one day either she will go on to heaven, or I myself will make it there first.  I joke with her when she speaks of her age and that she may not have many more years, that I guess we are now in a race to see who sees Daddy first!

I really do need to savor the moments she is here... not worry about the day she flies back home.  I can't help but wonder though the next time we see each other, how much farther progressed the ALS will be.  Will I even be able to hug her? Talk to her? Respond to her?  Oh how I hope so.