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"

Baby get your shine on, finding a new groove

Another month is coming and going.  I can't hardly tell you what happened to January and February but I think it boils down to two things.  We live in a new house (eek!) and we have a 2 year old (double eek!).

Seriously though, finding my groove in the new house has been challenging.  I still have zero idea what channels are what on the TV since we moved and switched companies and when the kids go to bed I am never sure what to do.  I don't know if it's too much space to narrow down what I want to do or if I am just utterly exhausted but either way, somethings gotta give.  I've started with something simple.  I now make sure my nails are painted and I take care of them by changing the polish before it looks horrible.

Loving my new Orly polish, 6 days and going strong in this pic.

Wasn't 100% sure on this minty color but it's growing on me!  

It's baby steps for sure but I had to start somewhere and it's always fun to buy new polish, next up is a sun kissed yellow, baby blue and tulip pink.  I jumped back on the workout train after a near 4 month hiatus.  The kids and I, especially Alyssa, love working out together and she is quite dedicated to it.  If we haven't worked out yet she is the one that grabs the mats and says it's time!  It's definitely an energy boost but again I am a little OCD about it and get worked up over missing a day.  I am now also going to start blogging at least a few times a week because alot of my mojo came from dumping my brain out via family blog.  Let me tell you that my brain is full, full of memories that need to be remembered, crisis (that's being dramatic) that needs to be talked through and spiritual thoughts that need to be committed to heart via (again) blogging.  I also think that I might have a bad case of those winter blues.  We want to get outside so bad that it's downright depressing.  It's been so cold out that when I had Monday off and asked the kids if they wanted to play outside they both shook their little heads "no" and Riley said "it's just so cold out and it takes so long to get dressed and then I just get wet and cold and I don't want to be so cold Mommy."  I think it's clear that we all have a little winter blues!

Good thing we have eachother to keep us warm and laughing!  And laughing I was not doing while trying to take some Valentine's pictures of my own but I cannot help but to look at the results and realize that it was perfection during and after!

Clearly, I did not take into account the back of his hair after naptime!  

Sister is so expressive!  I am utterly obsessed with her and her little 'tude (which is all show!).

She really loves "her Riley".  

For now let me tell you that I am having major anxiety over working a 6 day week, having a party on Saturday and also Easter on Sunday.  That equals 4 dishes/appetizers to make, 2 Easter baskets to prepare, about 150 more wedding pictures to edit and a whole lot of getting up at 4:20 a.m. mixed in with one alarm for 3:45 a.m.  I purposely worked right through naps today so that I could maybe for once fall asleep at a decent time tonight but that is doubtful.  It's pretty ridic to start your week off (every week) feeling so anxious and someday soon I hope to just give it up and enjoy the beginning of the coaster but that anticipation gets me every time.  This is a huge weakness I have, I share it out loud to hold myself accountable to change that.  Enough with the "next week will be different"  and "just get through today's",  this small step in changing my perspective will be a dramatic shift in my Sunday tone.  No one likes Mondays but certainly they aren't going anywhere.  You can expect my next few posts to be rather mushy about our fresh 2-year-old and our big almost 5-year-old.  They are always on my heart but none more than now when life seems to be spinning around and around too fast.

Happy Palm Sunday to you and Hosanna, Hosanna in the highest!

My other little resolution is flowers, buying them on a whim and enjoying all $1.95 of them until I kill them off, which I always do!  But isn't that palm branch amazing!?  Alyssa scored big at church today when she brought home two, one of which I stole quickly before the kids damaged it!  

Has it really been since November that I published a post?!  I am a focused woman, focused on everything house and family.  It's been a busy, blurry month and I looked at the calendar today and realized that I am going to have a 2 year old soon!  Eek, why does that sneak up on you so fast!?

I am super excited with a new job position in Champlin (10 miles to work now!) and loving every second of every work day which is a huge blessing and something I have earnestly prayed for over the last year.

My Mom is back to doing daycare and we are loving having some normalcy/routine back in our everyday lives.

The kids have easily accepted our new home and transitioned so easily into their rooms and our new home life.  It is yet another blessing to be here and call this home.  I am still enjoying the newness of our surroundings and the cleaning is still a joy but check back on that one with me in a year!  This is alot of house to clean but it's been pretty manageable and we take it bit by bit everyday.  Who is the we?  Alyssa has entered the "I do it" stage and is my shadow.  Riley is proficient in folding towels now and they actually have been really helpful and conducive to cleaning up the toys at the end of the day.

I have spent two nights alone in this house and both nights I didn't sleep a wink.  Just too many entrances to entertain a crazy sleep deprived mind!  Our old house was so tiny, er humble and I was close to my neighbors.  Here I don't know anyones name and I don't know the noises of the house yet so I kept my eyes open and alert all night.  My brother helped alot when he texted that all I had to fear was the deer.

Indeed we have seen our share of deer.  I believe Riley has the count up to 11.  The best spotting was just a few days ago when right before dinner 3 of them started chasing eachother around like dogs.  They are so fast and they played a long game of tag right in our backyard before they took off and weren't seen again until late that night when I was driving home from Bible study with Alyssa.  I rolled down her window and she waved to the deer standing in the road looking at her.  It was crazy how calm and serene they were standing up next to a Tahoe and I cannot wait to explore our "wild" backyard more this Spring!

We are battling some colds right now and gearing up for some painting this weekend so I will be tied up again until the middle of Feb...or the next time I feel like journaling a bit.

We are signing up our baby for school next week to start in the Fall and I am a bit weepy over it but she is ready and so excited!  She is so darn lovable and kissable it's unbelievable.  Such a sweetheart indeed.

I will leave you with just a few pictures cause what's a post without pictures?!

He looks like me but I don't sleep looking that pretty, those lashes, those lips, those little fingers folded up in prayer!

She is a hot mess of nukie love, it is going to be a struggle to get them away from her but already she is down to only getting them in her crib so baby steps it is!

Hunting partners in their "lodge" our fireplace nook!