Life after 11/7

It is with a heavy heart that I share this sorrow and pain with you, my friends and family.  I have kept quiet except for a few tear filled phone calls here and there but for the most part it's been a pain shared with just our family and we needed that time to wrap our heads around it but now I/we need support and a reminder that life is to be lived even under duress.

Last Feb my Mom mentioned that she couldn't shuffle cards anymore and honestly we laughed.  I didn't think twice about it.  She worked hard her whole life and I brushed it off that it was arthritis.  I didn't know that she was having trouble cutting her own nails soon behind that.  I never noticed that her hand seemed slack and I only took note a few times when she mentioned she was seeing Dr's.

We are a selfish creature.  This hurts so bad to type but I am a very selfish person.  I get up early and I am always tired and I deserve a break and yada yada yada.  I could kick myself for everytime I got so frustrated with her lack of energy and her nit picking at my lack of organization and always waiting on everything till the last minute because I had alot on my plate.  Ha, it's so absurd and so just like me.

She is such a brave woman and was so blind to what was coming next that she went and saw her neurologist alone on Friday Nov 1st.  She had an EMG, torture as she describes and then sat in that sterile office by herself while her Dr explained all the things her arm weakness wasn't until she finally said "I think it's ALS."  She picked herself up and proceeded to the bazaar at church (craft fair and turkey dinner) where she organized all the help and needed to be there to make it run smooth.  The next day we had a shower at my house for Katie and Jaxson and we didn't even ask how her appt had went the day before.

Fast forward to Thursday November 7th and I had 4 missed calls from Kyle while we were in the theater watching  Free Birds to celebrate Alyssa's recent potty training victories.  I called Katie first to see if she had any idea what was going on and she was crying as she told me "Mom has Lou Gehrigs."  I don't even clearly remember what happened next but I think I actually felt something rip open inside of me.  I don't know if there is any pain worse in my life then when we sat around the dinner table when my parents announced that my Dad had cancer until 11/7.

I don't love my Mom more but she's my Mom.  She picks up my messes, she makes us dinner, she asks me how my day was, she watches my kids, she sews little projects for me, she thinks of me when she is out and about and sees a good deal, she tries to make my life easier simply because she is my Mom.  I don't know how many times I have said aloud that I can't do this without her.  I have never really felt like much of an adult outside of having 2 of my own kids but that is because I've always had a soft place to land.  My Mom will always be there to help me next week when I finally get around to whatever it is I have made 101 excuses for.  She's my Mom, she loves me and even now when I realize what a selfless job it is I didn't try hard enough to let her know I appreciated her everyday.  I remember distinctly being 7 or 8 and realizing that someday my parents would die and that they weren't invincible.  I remember crying myself to sleep many nights because of that thought.  That carried into my years, that fear that would grip me out of nowhere that my parents could die.  I faced it head on 9 years ago and after that I thought we were in the clear.  We had our trial, we came out standing.  I remember waiting up at night until she got home from the Vineyard because I could only sleep knowing she was home and safe.  I could smell the grease and prime permeate into the house and everything was right.  We all eventually (Kyle, love you bro) moved out and we ventured far into the real world, a whole 7 miles for me, maybe 1.5 for Katie and 5-6 for Kyle.  My Mom has held us close and her example kept us near.  We all need her for our own reasons.  We aren't much for adventures, that's the Hutchie gene, we want the comfortable spot that is our place in the family.  We laugh at eachother and we play games, we bicker and fight.  We give eachother snarky comments sometimes and some of us wait until we blow up over silly little things that have finally gotten the better of us.  We almost pee our pants laughing when my Dad is around and my Mom is always there cooking and organizing and planning.  She's our cheerleader, our ringleader, the chain that holds us together.  It's not perfect, it's sometimes dysfunctional but it's ours.

She's the person that will always love us because she's our Mom, no questions asked.  She's supposed to be the one that's going to talk Alyssa through her periods of hating me.  She's supposed to be the one that makes Riley smile because Nana is celebrating him by making all his favorite food for his birthday even when we didn't get him the latest and greatest toy.  She's suppposed to always make sure my kids are loved are when I am at work and she's supposed to hold my hand when I send my little girl off to her first dance.  She's supposed to spend Riley's first day of Kindergarten with me and remind me that he will be okay.  She's supposed to be sitting next to me in church years from now long after my kids are happy to be there and they are brooding.  She's our person because she's our Mom.

I cannot even tell you how broken and sad I am.  I am just worn.  The emotions and fear have literally sucked every bit of me out.  I'm worn even before the day begins.  I am either crying when I realize this is real or I just stare out at anything and get pissed.  I don't eat, don't shower, don't smile.  Gone are the nights immediately after hearing the news that I slept hard and good, exhausted from crying, replaced by nights of worry and fear of the future.  I cannot shut off these lists of things that we need to do, now, yesterday, only to replaced by the sheer exhaustion by emotions that light brings.  My heart is so heavy and my chest is so tight.  I sit my kids in front of the TV and I just lay down and stare, numb and in denial that this is the plan for our life as a family.  I can't figure out how to pray or what to pray.  I can't figure out who to worry about the most, my 24 year old brother, my sister that is a brand new Mother, my Dad who loves her so and has for so long, my kids who are going to watch this devastating disease overcome the single person they have seen more than Derrick and I.  And then there's the worry for my Mom who has always, always done everything for every single one of us.  The one who doesn't sit still for long, doesn't really watch TV, loves serving others.

I am trying so hard to realize that this is what we make it and that we are "lucky" to have this time to finally get it right.

I was so excited to get an appt with Dr Walk down at the U for her 2nd opinion and then I realized there is nothing to get excited about.  Even the great Dr Walk has no treatment plan, no medication, no hope.  This is an incurable disease.  There is no reason anyone gets it.  Some last a year or less, most last 2-4, few make it upwards of 20 years.  Dr Walk was great, he was kind and sincere.  He explained that there is no test that actually diagnoses ALS and then he went into detail about why it can't be Lyme's, lupus, MD, arthritis.  It's diagnosis by elimination.  It's the falling asleep of one's muscles until there is nothing left.  We listened to the OT lady and the MDA lady and the ALS lady and the nurse and the whole time I wanted to scream at them to get out that this wasn't okay and we weren't joining the club and at the same time I just wanted them to make it all better and keep talking, giving us some hope and some counsel.

There's little anyone can say.  It only helps right now to be together.  I know I will eventually step up and live again but for now I feel so broken and crushed when I am not with my family.  I know I will never be the same ever again.  I just assumed that we would watch my Mom age gracefully as she has done already and her and my Dad would be sitting in the bleachers at our kids' graduations.  I assumed that I had time to learn from her to be more full of grace and mercy.  We all obviously assumed so much and the loss of those future memories and plans is suffocating.  It's the worst pain I have ever, ever been in.  I look into my kids eyes and I see sadness reflected from my own for all the pain they will go through.  I hold Jaxson and I cannot help but get consumed by what is being taken from him.

For now, I will keep my eyes on trying to take each day anew.  I will try to not look into the future and cherish this day.  To learn to smile again and let someone hug me because it's okay to be devastated and need that hug. I know what I have to do, I just need to figure out how to take those baby steps to keep my feet going even when they aren't directed towards heading home to be with my family at my parent's house.  I need to shut off my mind and just be present, in this moment, the world has ceased to stop spinning even though in my minds eye it has.  I will hold my Mom's hand and help her every step of the way.  I won't miss anymore opportunities in regards to her.  I will try to let my husband in and show my kids patience and love even when I am feeling miserable.  I will realize that nothing will ever be the same again and that those dreams will not die easily but new dreams will take shape and smaller victories will be celebrated.

I will end with how strong again my Mom is.  She has accepted this with more grace than anyone could have ever imagined.  She wakes up and smiles everyday.  She told us she wants to laugh and live and play games.  She let us know that she is ready for heaven and that she knows this won't be easy but that she is grateful that she will never lose her mind.  She continues to live, working out, eating healthy, watching the kids, volunteering.  She is still the example that she has always been to us even when it's not fair and sucks.  We don't know what tomorrow brings and either do you I suppose, does that make it easier?  Not by a long shot.  Please pray for time, more time, good time together.  Pray that this disease stops at her left arm/hand and gives up.  Please pray for the strength for us to keep moving and face each day with even just a little grace. I don't even know what to say, I am completely numb.  Most of the time I just cry out to God and say "no" over and over again, knowing that he understands.

I get a massage twice a month and I shared for the first time face to face saying the words aloud that my Mom has ALS.  I saw compassion and when she came into the room after I got on the table she read "Jesus Calling, November 12th" to me.  That was the single most effective way to move into my heart.  To remind me that this is not over, we are together, we will be together.

My Mom also emailed me on Saturday after we first found out because this was November 9th's devotion.

"Jesus Calling, November 9th, Sarah Young"
Sit Quietly with Me, letting all of your fears and worries bubble to the surface of your consciousness.  There in the Light of My Presence the bubbles pop and disappear.  However, some fears surface over and over again, especially the fear of the future.  You tend to project yourself mentally into the next day, week month year, decade: and you visualize yourself coping badly in those times.  What you are seeing is a false image because it doesn't include Me.  Those gloomy times that you imagine will not come to pass, since My Presence will be with you at ALL times.  

When a future-oriented worry assails you, capture it disarm it by suffusing the Light of My Presence into that mental image.  Say to yourself "Jesus will be with me then and there.  With His help, I can cope!"  Then come home to the present moment, where you can enjoy Peace in My Presence.  

Music moves me:  My go to songs for this season of life are the following.

Building 429 "Where I belong" and "We won't be shaken"
David Crowder Band "How he loves us"
Sanctus Real "Pray"
Heather Williams "Hallelujah"
Tenth Ave North "Worn"
Mercy Me "I can only imagine"