Mercy

I ran into the oddest off all devotional notes today and after having a sleepover with my loving, sincere, sweet 2 year old I feel refreshed.  The sleeping pill kicked in and we were in bed by 9 but not until I watched the NFL networks "A Football Life" on Steve Gleason.  Talk about a craphole hand he's been dealt.  Derrick warned me not to watch it.  I did it anyways.  It was nothing that I didn't already picture in my nightmares and honestly I needed to watch it.  I needed to face the fear head on and not blink.  Basically what I got out of it was that life could be a whole hell of alot worse.  He was diagnosed in 2011 when he was around 35.  Now in 2013, he is wheel chair bound with no speech capabilities except electronically and no movement in any of his limbs.  It was painful and it was hard to watch but he brought me back to reality.  The reality is that this disease sucks.  The reality is that this is an underfunded, under researched disease.  The reality is that this disease has knows no boundaries.  It takes the young, the old, the middle aged, it takes all races and all diversities.  Are you kidding me right now that in this day and age they can't find a link or a cause?  Are you kidding me that the plan of attack is to enjoy each day.

My notes from the book Captivating were sitting on the counter this morning.  Derrick probably took them out of the junk drawer to find something else but these words kicked me hard.  "Live in the present.  Our future as we imagine it is dictated by fear and rarely includes God.  We try to take control over something we can't.  The future isn't even real, making plans and contingencies stops us from living in the love of today.  I went on to note that "don't ever assume that using something means God caused it.  He doesn't need it to accomplish His purpose. Grace doesn't depend on suffering-where there is suffering you will find Grace."

So today I resolve to live for today.  Today might be crappy and hard but anything that is worth it isn't any different.  I urge you to take a look at http://www.teamgleason.org.  

The Pain Train

I want to preface this by saying that there is no easy way to say goodbye to anyone let alone your parents.  I do not wish any of this happens nor would I ever be okay with any of it ever happening, I am just sorting through some very dark, tough moments that I need to release.

Nothing makes sense most days.  I can go a whole day and have somewhat normal conversations and then I leave those and find myself alone and I break down.  I cry with such a gut aching pain that I could just lay down and fall asleep after.  I go through the motions of family life.  I eat more now, I shower, I bathe the kids, I do laundry but it is a constant fight to get through any of it.  I am so darn tired.  I can't ever sleep and that makes it so much harder.  I lay in bed, dog tired and my brain goes into overdrive.  Before I know it, it's been 1 than 2 hours and I am still awake.  Dangerously close to going into delirium.  I go into autopilot.  I am able to find joy and smile a bit each day even it is fleeting but there have even been hours where life seemed normal only to be followed by the realization that this doesn't go away.  It's here and never going to go away.  It's so crushing and so overwhelming.  This is where the dark thoughts come in.  I wonder if it would be easier to say goodbye after a car accident or a battle fought hard against cancer.  That would maybe make more sense (again, read the 1st paragraph), maybe it would be easier to wrap our heads around.  However tragic or planned out the treatment might be it maybe would have been easier to follow and would have made somewhat of sense medically.  This is just such a shock still and it makes no sense.  There are roughly 2 out of every 100,000 people diagnosed with sporadic ALS.  Only 5,600 people in the whole United States.   There is no cause.  Nothing you did wrong.  Nothing to do about it.  It makes no sense, no sense.  You almost have to pinch yourself when you are around our Mom.  She looks great.  We've been mistaken as sisters.  Poor Kyle ( ; ) hahahaha) has been mistaken as her spouse.

I finally read the ALS material provided to us by the ALS chapter of MN and the Dakota's.  There was a man's story in there that had been living with it for 23 years.  He mentioned that the urge to get everything done shouldn't necessarily be jumped on.  Of course he said that.  He's been living with this for 23 years.  I had a few things I would have loved to say to him and then I remembered that this club is rather exclusive and even though he has survived much longer than the statistics would have let anyone think he is still a victim.  The book didn't do much for me.  It listed horrible realities about this disease.  Percentages are listed at 50% of patients surviving more than 3 years, 20% surviving up to or more than 5, less than 10% surviving beyond 10 years.  It really becomes clear that this needs to be a God thing.  I just can't seem to get over being so pissed off at Him or even having a clear enough head to pray or seek guidance.  I have shut off feelings around most of my family and friends.  I don't want to be a burden of tears and emotion.  I get alone and I release it and it feels good.  I need to release it.  I'm not consumed by the gut wrenching pain that was the first 7 days after 11/7, now it's a sharp at times, dull ache that there is also no treatment for.  It's like that nightmare dream that everyone has where you are trying to get out of the door for work or school and you are hardly moving, every limb is heavy and you are in slow motion, you are screaming out for action but it just continues at a snails pace.

There have been moments of happiness that have included family card nights, card nights that turned into appetizers and talking, more hugs from everyone, the realization that we are a strong family and that we respect and love eachother more than we might have realized.

Riley perked right up in church when he heard Pastor pray for my Mom.  He had worry in his eyes but she had already prepared them with "Nana's muscles aren't working very good, you need to help me out a bit more," and then I had reiterated prior to church that people love Nana and that they are praying for her muscles to start working better.  That led to the most beautiful, painful conversation I have had with the kids on the way home.  We drove by a cemetery and he asked about what is underground.  Without wanting to scare them I explained very clearly that God makes our bodies new when we die and we go right up to Heaven to spend our days with the angels but that our earthly bodies are buried in the ground.  I continued that we bury the bodies because we want to come and visit the people we love that we miss in Heaven.  He told me that Daddy took him to visit Papa Bob and that he felt so happy to see him and talk to him but that it made him sad because he misses him and he wants to go fishing with him.  He asked if Papa or Nana will die and if and when Daddy and I will die.  I saw the pain and fear in his eyes and I tried to get across to him that we plan on living a very long time but we look forward to Heaven because God has built a house up there for us and we will live in great joy and happiness everyday.  There will be no fighting with your sister or time outs handed down.  There will only be smiles and songs.  Alyssa chimed in and said she wants to go to Heaven but that she does not want anyone to die because she loves her fami-wee.  Then Riley explained to her what I just told him about Heaven and it was so refreshing and so loving I couldn't help but let the tears slip out.  He told us very seriously that he loves us and loves God.  It can't possibly make much sense to them but it was an important conversation nonetheless and childlike faith is what we are all supposed to strive for.  He certainly feels the pain seeping from me and he sees everyone hugging Grandma and whispering.  He told Derrick later that night when he was asked if he would still give Daddy hugs when he was 20, "I will Daddy but I don't think you will still be alive."

I will be going to part time shortly after the new year.  It was something I have always wanted and it wasn't until my Mom got sick that I think it finally fell on ears willing to hear.  There is nothing to say about it except that I'm not excited much.  I can't believe I finally get to work 4 hours a day but for the sole reason of spending more and more time with my Mom before she dies.  To help her and love her and make sure she sees the grandkids as much as possible but doesn't get tired out from them or lose her energy too fast.  I'm incredibly grateful and indebted to my husband for the support and the understanding.  I am so grateful to spend the quality time together and spend the last 9 or so months with Riley before he goes to school FT for the rest of his youth.  I try very hard to live in that excited part.  I try to get excited about Florida in February.  I tried to get excited about Thanksgiving but it's just painful, I heard the pain in my Dad's voice, I saw deep pain in my sisters eyes.  I felt deep pain in my heart.  My Mom has started cleaning out her sewing/crafting room.  It hurts.  She mentioned that she has Christmas presents for next year already.  It hurts.  She got her battery of blood test results back : perfectly normal, diagnosis by elimination of everything else.  It hurts.  I see normalcy for everyone else.  It hurts.  Mentally, I understand, emotionally, it makes no sense.

For my kids, for my husband, for my parents, for my sister and brother, for my friends and co-workers and extended family.  I am doing the best I can right now.  I love you all so much.  I am pretty sure this is never really going to change.  That I will struggle with anger and acute depression over this for the rest of my life.  It may soften a bit and maybe it won't.  I may be there but not really there in situations.  I will find my faith and grow it up to more than it's ever needed to be to work through this and at least get some peace and rest in each day.  It's there, germinating, slowly coming to life.  Without your prayers and kindness I can't imagine where we would be.  I will be angry and then sorrowful and then happy and that will be normal.  I will go to group therapy and I will find a way to fight this and push the research forward.  I will lose my step and then my self control.  I will cry and hurt and smile and laugh.  I will not ever come to terms with this taking my Mom and I will scream out in silent prayer every night, NO.  I will beg and plead.  Please keep a bug in Gods ear with us.  A big bug for this disease to stop, to reverse, to be gone.  Please pray that my Mom be healed and with us for much longer.  Please pray for our hearts and mind and even more importantly for our kids' hearts and minds.  Pray that my Mom's courage and strength stay firm within.  Please pray for our peace and rest and for the understanding and love of the Creator to seep His way into us.  Please pray.

A grief observed.

Life drones on.  Tired, lonely, overwhelmed and back to tired.  I am shocked at the array of emotions I can feel in any given day.  I start out as tired and depleted of energy as I ever have but I keep moving, surprised that it's been 2 hours then 4 hours then punching out time.

I have gone from utterly heartbroken to angry and downright pissed in no time flat.  I called my sister Saturday night and I let some nasty curse words out as I cried in anger and rage just moments after literally crying in heartache the whole way home.  I watched my Mom all night long. I watched Alyssa sneak over to her multiple times to snuggle or get something off her plate.  I grew progressively more and more angry until I thought I was going to explode.  As someone put it best "this is just really shitty."  

I went to church and had one of those floating body experiences.  I was there but I wasn't.  I cannot tell you how much it meant to me to have your hands on my shoulder even for that brief second or that conversation that let me know we are not in this pain alone.  I wasn't myself and I don't think my reactions were there but it meant something to me, even if it the acknowledgement of what it meant came later in the day.  I eventually left the sanctuary and found God in the library and he guided me to books that caught my eye.  The books sit heavy in my purse, I can't quite open them yet.  

I'm not sure what the stages of grief are.  I think I am currently in denial with a healthy side of angry.  I don't want to talk about much of anything.  Life's details are not in my radar yet.  I am focused on my family, especially my kids.  I am trying to just keep one foot stepping after the other without losing my crap.  

I do not take anything lightly and I feel things very acutely and sharp.  Right now I feel like there's no way this will break down my Mom, it can't.  I have hardly seen her sick a day in her life and looking at her on Monday gave me hope that we have this all wrong or that she will be blessed with many, many years ALS free and healed.  She told me she feels He has a plan.  I felt it too.  I don't want to be foolish or blindsided but I felt it.  

Maybe I just feel your prayers and love shining through the darkness that surrounded me just days ago, maybe I am so numb that I can't feel anything anymore, maybe I am in survival mode or maybe this is my new normal.  Get through the day as quietly as possible, pray hard and reflect on life in moments of silence that go on for way more than moments, go to bed earlier than you ever have, repeat the next day.  

My mind is so scattered.  I want to personally acknowledge the kindness shown to us already.  Even my Mom noted that she is shocked at how many people care enough to call/send a note/walk over.  It's a shock to everyone that knows her.  The lasagna and cookies, the countless messages via FB or email, the text messages just sending love and thoughts, the shoulder squeezes, the phone calls, you guys, I just can't say enough about how much it all means.  I never thought it took a village, I thought it took my Mom and Dad, now I understand the village part.  

I just can't get my thoughts together so it's time to sign off but I had the best, most heartfelt, loving, sad conversation with my kids driving home Sunday and I want to eventually share it.  Next time, when my brain isn't racing and my tongue isn't so tied up.  The kids now know that something is wrong with Nana's muscles.  She told them alone on Monday and just asked them to help her out more.  Always, always thinking about them first, she told them without fanfare and in the simplest, easiest way for them to understand.  There was no fear, no sadness, no worry.  Oh to be 5 and 2 again.  I love their innocence and their unconditional love.  

Jesus Calling, November 19th.

Leave outcomes up to Me.  Follow Me wherever I lead, without worrying about how it will all turn out.  

...

You already know the ultimate destination of your journey: your entrance into heaven.  So keep your focus on the path just before you, leaving outcomes up to me.  

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"