Confession

As I laid awake at 4:30 this morning, I realized something about myself…

I am afraid to recover.  I am afraid to ‘get better’. 

My first experience with death was my uncle.  He died just as he seemed to be turning his life around.  His death was hard to understand.  He had just completed 90 days in rehab - a recovery of his own.  He was staying clean to the best of my knowledge, then a terrible accident took him.  It all seemed so pointless.

Over the years I came to believe that we are all here for a reason.  There are things that God wants us to learn.  When we learn our chartered lessons, God will call us home as our work here will be done.

A more poignent and recent death was that of my mother just two years ago this Thursday.  My mother had been through years of recovery (CoDA).  She was finally a strong, proud, independent woman.  She began living life for herself.  She had purged the negative in her life and confronted demons.  She finally had a job that she loved, many friends, and God.  A life to be proud of.  Then it was all destroyed by ALS.  Again I wondered what the point had been.  I wondered why God couldn’t just let her enjoy what she had worked so hard for.  Alas, it seemed to me that lessons had been learned and so God had called her home.  I accepted that her work here was done.

My grandparents on the other hand are in their 80s.  They have buried 4 of their 5 children.  My grandmother treated the 4 that are dead the worst - the one still living was always her favorite and always garnered special treatment.  Her favortism rolled down to her grandchildren and great grandchildren.  This was always difficult for me to understand as a child.  She is bitter, mean-spirited and thoughtless.  Yet she lives on and on - spewing hatred as she moves through life.  Is it that she hasn’t learned…and so she is still here?  My grandfather just sort of sits and watches - never says much of anything.  Never stands up to her…

This pattern lingers in my head and in my heart.  I’m afraid that if I learn all my lessons that I will be called home - and I don’t want to go just yet - I want to be here for my children…  I know I have much to learn…but sometimes I am secretly afraid to continue the journey.  I want to learn to be a better person - to love myself and others - to learn forgivness.  I don’t want to end up a bitter old woman…and at the same time, I’m afraid what awaits if I choose not be become the bitter old woman.

 

For Me

I’m still here!  I haven’t done too bad on the committment I made to myself, but I’m stuggling and once again I failed to let go and give my compulsions to my God.  I have to remember that this, above all else, is one of the most important things I can do for myself.

Doing for myself…hmph.  I haven’t given myself much time lately to do much for me.  It’s becoming more clear with each passing day that before I can move forward with this OA stuff, I have to love myself enough to give myself what I need to ‘be healthy’.  I don’t know if this is making sense - but I do for everyone before I do for me.  Taking care of this person and that person and never caring enough about myself to do for me.  I learned this behavior from my mom.  She always did for everyone, took care of everyone.  Luckily I also learned recovery from my mom.  She grew so much through her recovery for co-dependency.  I watched it happen - although I didn’t know what was going on at the time - and now thta I’ve read her journals, I see even more clearly how far she came.

I want that for myself.

 

Mom

I cried.  As I wrote that last post, I cried and in my heart I asked Mom for a sign that she was okay.  That it wasn’t my fault.  That I did enough.  I closed the laptop and took the dog out so I could head to bed.  As I stood on the back porch, against the starry, dark, night sky, a white bird flew over and disappeared into the night sky.

 Thank you God.

Thank you Mom.  I love you…

 

More Memory Searching

I continue to think about my relationship with food.  How did it become what it is now?  Most of my memories with Mom involve food.  I remember big Sunday breakfasts, big Sunday dinner, a snack waiting for us each day after school, Mom’s cinnamon rolls and her teaching me how to make them, making and baking 10 kinds of cookies and 5 kinds of candy each Christmas, learning how to make bread and realizing the therapeutic qualities of kneading the bread, beef roll ups, homemade noodles, warming our hands on the popcorn popper, etc…

Maybe that’s all mom and I did together?  Was I neglected unless she needed help or company in the kitchen?  I can’t remember doing a puzzle with her.  I can’t remember playing a game or her reading me books.  Why is that???  Am I doing the same thing to my daughter?  Miss T and I already have special traditions (rituals?) involving food.  We bake at Christmastime, I love to have her helping me in the kitchen, when it’s just us for dinner we have our favorite - tuna sandwiches on whole grain bread with buttered popcorn and a coke.

Maybe I’ve turned to food more since Mom’s death because it helps me to feel close to her? 

I can recall this post where I realized something about myself.  This was shortly after Mom’s death, after years of watching her waste away - eating less and less, choking more and more, after the insertion of her feeding tube, after weeks of caring for and cleaning the hole in her stomach, after ‘feeding’ her 6 times a day with a syringe.  The less she ate, the closer to death she crept, finally dying.  Of what - of starvation?  No - she died from ALS.  The disease starved her body of oxygen.

I feel so guilty about Mom’s death.  I didn’t do enough.  I should have fed her more.  I should have held her more.  I should have stuck up for her more.  I should have taken her to Disney Land!  I owed her so much more than I gave her.  How could I let her down like that?  After all the let downs in her life - how could I do it to her again?  I can hear her telling me that it wasn’t me.  It wasn’t my fault.  But I can’t believe it.  I’m so sorry Mom.  For everything.  So sorry…

…

 

Happy Birthday Mom

Today would have been Mom’s 56th birthday.  Sis and I will go to Lone Star tonight.  Like Sis said - that’s where we would have been if Mom were alive.  I know mom will be there with us.

 

Dear Mom,

Watch over me today during my surgery.  I want to come home to my family, but if I must leave this life today, be there to guide me into the next.

I love you

I miss you

 

I’m gonna miss her when she’s gone!

I guess that’s why I felt the need to write that last post. Of course I’m going to miss my mom…but this week…I just have a feeling that she’s tired of fighting the ALS. Her spirit isn’t the same - it’s changed somehow in the last couple of weeks. Maybe since she gave-in to the fact that she’d have to quit work…? She’s just not the same lately and I can’t shake this feeling that she’s hoping she’ll die in her sleep.

Why am I thinking these things!?!?!? Am I a bad daughter? Should I be doing something different? I feel lost…sad…confused…helpless…

Brother stopped by at lunch today - we only chatted for about 20 minutes because I had a meeting for work - but it was good to see him. I told him that he needs to get out to see Mom and he needs to get the kids out there as often as possible. I told him about my feeling that things were drawing to a close…he mumbled something about not waiting until it was too late and something about regret and then he was gone. I really hope that he gets out there…it would mean the world to Mom.

 

Remember When?

…we’d warm our hands on the popcorn popper when she got home from the late shift at the hospital?
…she yelled at us for wrestling in the house and knocking the picture off the wall?
…she always had a snack waiting for us after school?
…she’d clean house on Saturday mornings and crank up Mac Davis, Crystal Gale, The Four Seasons, The Oakridge Boys or Elvis?
…she made fried eggs every Sunday morning?
…we had a big family dinner every Sunday afternoon?
…she curled up in her rocker and cross-stitched?
…she graduated from nursing school?
…we’d decorate the tree together every year?
…she stuck up for me at Grandma Rose’s house?
…she sat up late, waiting to make sure I got home safely?
…she sat up late worrying when I snuck out of the house?
…I thought my middle name was a bad word because she only said it when I was in trouble?
…she made me write 100 times that I would be nice to my brother and sister?
…she hugged me when I told her I was pregnant at 17?
…she supported me through my relationship struggles?
…she let me tag along to her CoDA meetings because she knew I needed them?
…she cried with me, cried for me, and never gave up on me?

 

Just another laundry Sunday

So I’m folding towels last night and my 4-year-old was helping and the way she folded the towels just about drove me nuts! Am I the only one that has to have towels folded a certain way? There’s the square-fold and the tri-fold. I prefer the tri-fold for bath towels. Anyway…she always helps me by folding the washcloths and hand towels. She can’t really mess up the washcloths (unless I happen to notice the stripes). When I fold a towel, seams to the inside, fold on the long edge, etc. Why does this bother me so much? I’m the same way when it comes to loading the dishwasher - everything has a certain way to be arranged in the dishwasher. And - it’s only the dishwasher - I could care less how the dishes are arranged in the cabinet. Shirts need to be hung on the hanger the right way (did you know there was a right way?). Cap just puts the item on the hanger and hangs it - but if I catch him doing it backwards, he has to re-do it. Everyone knows the right arm of the shirt goes on the open side of the hanger - and the right side of the shirt is at the back of the closet.

The kids are all gone today - it’s just me and Cap - I’m doing laundry and making loaves of bread (by hand - none of that bread machine stuff) to share with the in-laws and Mom. TP is with Grandma decorating for Easter. BT is out skating. Cap’s playing Shadow of Rome which has turned out to be a pretty good game.

Yes - it’s true - Cap plays video games a lot and instead of fighting it - I’ve embraced it. The games that he plays are sort of fun to watch. Usually RPGs - it’s like watching a movie that I can participate in. I’m not so keen on the battle parts - but the puzzles and the plot I really enjoy. My favorite to watch (I’ve even played a litte) is Final Fantasy.

Sis just called -I’m really getting sick of her. I don’t know why she’s so opposed to helping out with Mom - but she’s making me crazy. The way she complains about the lack of help from our brother, you think she’d be on top of the game - but as it turns out - she’s no better. I know she has to deal with it on a daily basis since she lives with Mom - but damn! Where’s her compassion?! She moved in with Mom back in the summer - so she could help Mom and so she could pay off the loan faster that she used Mom’s car as collateral for. As soon as she had everything paid off and when Mom needed her most she decides to buy a house and move. How incredibly selfish! She’ll stay there as long as she needs Mom - but whe mom needs her - forget it. This means that Mom as to move and has nowhere to go. She can’t come here - she can’t get into either of the bathrooms -she can’t go to my brother’s for the same reason. Mom’s semi-handicap accessible apartment is really it and we’re all she’s got.

I’m not sure where she’ll go the end of this month - I wish I had been smarter and insured that I had the money and resources to cover something like this - I feel really guilty that I can’t help Mom more after everything she’s done for me. I don’t think that I’ll ever forgive myself…

 

Just another day in…paradise?

I spent the last couple of hours wading through medical bills from the last few months. It turns out it’s not as bad as I thought it was. I owe 18k and there is 14k that was never billed to insurance. Hopefully they will pay a large portion of that 14k. I set up payments with everyone so maybe now my phone will stop ringing! I also set up my next follow-up appointment with Drs. Davis and Davis - Monday I’ll call Amber and schedule the PET scan.

Today was good - work was quiet - I snuck in some laundry. The weather was so nice - the kids played outside this afternoon riding bikes and playing on the trampoline and in the sandbox. It was nice to have them out of the house.

This evening, my Cap is working on taking the glass out of the 300 gallon fishtank that he built. The thing keeps springing leaks. He thinks that the silicone holding the glass on the gel-coat isn’t sealing like it should. Poor guy - after so much work! But as least he has a hobby.

I talked to sis today and found out that Mom’s not using her BiPap at night to help with her breathing. She also said that Mom’s gasped a few times and she had to go help her. ALS is such an awful thing to watch. I find myself staying away - simply because I don’t want to see what it’s doing to my Mom. I still see her nearly daily - but I don’t just spend time with her like I should. I think that Mom turned in her resignation at work today. I know that had to be really hard for her. She told Grandma and Grandpa B yesterday that it’s getting to where she can’t give shots anymore. That means her hands are going. I knew that her arms were getting weak…but didn’t realize how significant the weakness in her hands was. The ALS is now evident in every part of her body - her legs (where it started), arms, hands, torso, throat…it kills me to think that it’s going to get even worse.

I know that I need to talk to Mom about the hard stuff - but I just can’t seem to bring myself to do so. I need to ask her about feeding tubes and tracheostomy and what her wishes are. I just don’t know and if there were an emergency (since she’s been choking and gasping) - I wouldn’t know what to tell the paramedics and/or doctors. I think that being a nurse and always having been afraid of this disease that she will not want anything but God keeping her alive. But I just don’t know - she’s got so much to live for. So much to stick around and see. And I guess that’s the point - that’s all she’ll be able to do eventually - just watch from her prison which she used to call a body.

I can remember during the Jerry Lewis telethon one year - probably around 1987 or 88 - Mom was explaining to me what ALS was how you became a prisoner in your own body - how your mind remained sharp, your eyes and ears unaffected, but unable to move, eat or breath on your own. How it would have to be the most horrifying way to live. Fast forward nearly 20 years and she is literally living that horrifying existence… It’s like she knew in some strange way…