I Wish

I wish I could hear her voice.  I wish she could hug me.  I wish she could watch my kids grow up beyond the walls of her bedroom.  I wish this pain would stop.  I wish she didn't know the evil trapped in her body.  I wish it were me and not her. 

Don't Know How to Daughter

My mom loved going to church.  She was dedicated and faithful in her attendance.  While my faith is weak, hers has remained strong.  Now she has to watch service from home.  This morning we watched service together.  Staring at the TV I'm looking at all the Easter lilies scattered beautifully around the alter, and it hits me that I really don't know how to daughter.  I should've had an Easter lily on the alter in her honor.  I didn't even think about doing so until I watched the service.   I so wish I were like my mom.  She would've had lilies for me if the situation were reverse. 

I Suck

On the weekends my mom and I used to stay up and watch TV together.  Lots of Diagnosis Murder.  Little Becca would stay up, too.  We'd fall asleep in our clothes and at some point I'd wake up, change, and mosey on to bed.  My mom would wake up, take a shower, and then mosey.  She didn't like to go to bed without showering first if she could help it.  Sometimes this would be at 2 am.  She'd awake the next morning as if she'd gotten a full night's rest.  There isn't a time I can remember my mom not ever being superwoman, even when I was upset with her for her rules or not understanding me.  And while we talked about so many things once I became a mother there was so much we didn't have to say.  We just could exist in a room together and understand.  Now I don't know how to exist in a room with my mom.  God I hate ALS.  And I hate that I suck at knowing how to exist with her now.

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.