I Cry. A lot.

I cry. A lot. Every day just about. Always in the quiet of my privacy.  As CS Lewis said, "No one ever told me that grief felt so like fear."  There will always be life before ALS and life with ALS.  I'd gladly go back to some of my darkest days before ALS and live in those days forever if it meant my mom never had to know a second of what this wretched disease is like.  I yearn for her always.  Her laugh.  Her fussing.  Her wisdom.  Her voice.  I cry. A lot. 

Darker

So three weeks ago my mom had a trach put in.  Up until then I had been with her for long stints of time at the hospital.  Her room was large enough the kids could come with me if need be.  The mask she was using before wasn't going to cut it and since my mom has decided to continue to live the trach was the only option.  A few days after the trach she was transferred to a rehab facility because she was reaching her max at the hosptial as far as insurance is concerned.  She's been at the rehab for two weeks now in ICU care.  ICU means no kids allowed.  To be honest though when I have gone to visit I've been too chicken to stay long.  I don't know how to visit and talk about my life and not feel utterly guilty.  I used to ask my mom for advice and now that seems so stupid.  Any problem I might have is just stupid. If I'm happy it also feels stupid.  Shameful. Unfair.  Even asking her how she's doing seems ridiculous and unfair.  It feels like I'm rubbing it in.  There's an uncomfortableness when it's just me and my mom.  I'm sure she feels it, too.  Tomorrow she's suppose to move to a private room which means I can take the kids with me to go see her.  God, I hope that helps in my ability to have access to her.   They love their grandma dearly and have spent many an hour themselves taking care of her at home and in the hospital.   So even though the trach was put in to make things better there is no better.  I still dream of her at night.  I dream she just magically heals.  Two nights ago I dreamt that she was home.  Arwen and I went to visit and check on her.  As we were there her voice started returning.  In my dreams I could hear her real voice.  Arwen and I went for a walk while she rested and when we returned she was walking again.   I woke up heartbroken all over again.  It's weird because those dreams come more frequently now.  Much more than before.  I don't talk to God as much anymore.  I don't even know what to ask of him.  I understand suffering is a part of life but someone as pure and kind as my mom doesn't deserve the amount of suffering she's been enduring since this all began.  And in all her suffering I am weak.  Too weak to be the daughter she deserves. And in this dark I'm starting to become numb. 

The Dark Beneath It All Has Surfaced

I have been such a mess the past few days.  I kinda fell apart Saturday afternoon, and I haven't really gotten it together since then.  I could blame it on work, kids, money, but it keeps coming back to one thing.  I tried to call my mom the other day.  For a split second I thought she was going to answer.  We used to have long phone conversations on a weekly basis.  I'm usually the type that says don't dwell on what use to be, to pick yourself and move on, but for some reason for the first time since my mom's diagnosis I haven't been able to do so.  There have been many a dark day since that diagnosis, but my feelings this week are all new.  Unexpected.  I've taken a lot of deep breath and moved on in my life, a lot of fake it til you make it but it's not working this week. The dark that is always there has surfaced but I can't get it to simmer. Thus enters guilt.  No matter my hurt, wants or needs my mom has been dealt worse.  I can at least take a deep breath, wash my face and hug my kids.  ALS has her trapped. Completely trapped.  Thus enters anger.   

I Just Don't Know

I feel ashamed saying I feel helpless.  But I do.  Here I can walk, talk, feed myself, get up and go whenever I want, cry and throw fits when I want, laugh when I want and yet I feel completely helpless.  But feeling this way also makes me feel ashamed because my mom's ALS prevents her from doing even the most simple things in life.  I wish I had answers for the what comes next or here's what we should do now but I have none. None.  She's becoming increasingly more tired.  We thought it might be due to a switch in her thyroid medication, but that doesn't appear to be the case.  She's losing pretty much all ability to walk.  While she hasn't been walking more than a hallway's length that hallway was part of the remaining independence she had.  Now that seems to be going away.  Her legs just don't respond to her brain telling them to move.  I can't even imagine what that is like.  When my mom was mobile she was superwoman.  You couldn't tell her a woman couldn't do something because she'd find a way.  Physically if she willed it it would happen. Now will just isn't enough.  I'm trying to figure this one out through God's eyes and I just can't.  She doesn't deserve this and none of her free will choices brought this upon her. 

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.