SUCK IT UP

So I totally had one of those moments today.  I was feeling completely overwhelmed this morning. Going over to my mom's 7 days/week for the past few weeks I have lost track of the days and sense of time.  Because of my husband's work schedule I have all three kids in tow with me everyday.  Taking care of my mom is relatively easy - nerve-racking, but easy.  Dealing with three kids going stir-crazy from the monotony is tiresome and not having a grasp on time because there are no days off is mentally draining. After getting home late Thursday night and having to get up this morning to pack I woke up feeling completely drained. I was trying to get ready to go on a small road trip with my mom.   After I finally got them ready I scurried  over to my mom's frantic a bit because I was running late.  I was hoping she wasn't stuck somewhere in her house in need of help.  Fortunately when I arrived she was doing fine. I did though get a sudden feeling of immense pressure - had to transfer our things into my mom's car, get kids in the house, make sure all of my mom's medical equipment was accounted for, make sure my mom had her personal things packed, make sure the kids weren't destroying her house while waiting, etc. 

 At one point I was alone packing the van and I sat down to cry.  Let me be clear - at no time have I ever been upset with my mom, ever.  I just felt like I was about to break - like I didn't have it in me to do so much at once.  Somewhere from deep inside; however, a voice was yelling at me:  SUCK IT UP.  I had to tell myself that a few times.  Thank goodness that voice was loud.  I wiped my eyes, took a deep breath and told myself aloud this time to SUCK IT UP.  I could handle it all and I should.  A few deep breaths later I moved on and with the help of my kids we were on the road.  We made it in good time, too!  It's a tad stressful for my mom here because she's out of her comfort zone as far as safety.  She knows how to move about her own home.  I wish I could just take it all away from her.  I can't imagine having to worry and stress about the things she has to think about.  God bless her.  

My Mom's Daily Prayer

One year ago when my mom received her diagnosis she started saying this prayer every morning when she wakes up.  You can see the teacher in her also - typed and glued on a cut sentence strip, then laminated (hehe).  God bless her.

Sleeping with One Eye and Ear Open

All week I've been spending the day at my mom's to help with anything she needs: cleaning dishes, moving things, getting her food, and other basic needs.  I've also been here just in case she falls - that way she has someone on site to help right away.  At night one of my brother's stays the night as he works in town during the week so he just stays with her.  On the weekends he returns home.  So, tonight is my first night to stay the night at my mom's house in a long time, and it's the first time staying with her ability to move around being so difficult.    I am pretty nervous.  She says she gets up 3-4 times a night.  What if she falls and I don't hear it?  Well, I wouldn't be able to stomach that so I'm just gonna sleep with one eye and one ear open.

Mind is Racing

1:22 am and I can't sleep.  My mind is racing wishing I had answers for how to take care of my mom.  With ALS her mind is still fully in tact so we want her to make the decisions.  Right now though all of us, her included, are researching the options.  It's all so confusing and uncertain.  Money is an issue.  Medicare is an issue.  Insurance is an issue.  Time is an issue.  Our availability is an issue.  I wish I could turn my mind off at night and sleep, but as soon as I start to think that I feel guilty.  At least I can get up on my own free will and go do something.  If I get up to go to the bathroom I might fall thanks to a Lego on the floor but not because my legs aren't getting the message to MOVE!  I try turning to God but I never know what to say.  I'm not faithful so I don't feel deserving of His time and attention.  My mom is however and that's when I get angry.   Why her and not me?  

My First Post - Stating the Obvious: I HATE ALS

So I don't even know where to begin.  I have thoughts all day long that I want to record, but by the time I get to the computer I just can't seem to think of what to say.    Everyday I'm heartbroken.  I don't want pity - that would be selfish of me.  You will find, though, at times I am selfish - sometimes very selfish.  It's not a trait I'm proud of.  This is something my mother has NEVER been.  I've never seen her put herself before others.  This isn't an exaggeration either.  While I am stubborn like my mom I do not possess the same blessed soul as she.   As she struggles to figure out how to live now being almost completely dependent on others to meet her physical needs, I mourn.    I actually dreamt today during a nap I took on her couch that she started getting better.  I dreamt she was standing in her kitchen making a batch of cookies for the kids.  I woke up feeling happy for a split moment thinking it was true. That split second in the realm between sleep and being fully awake was gut-wrenching.   What a cruel, cruel dream.  I hate ALS and everything about it.