Darkness lifted

When I look back on the last few months of last year all I see is utter despair and gut wrenching heartache.  I take note that I needed that time to grieve and grow at the same time.  Sadness still finds me but it's a far cry from what it was even a week or two ago.  I have been lifted out of that darkness by  my Mom especially but by my personal devotion time and through the devotion and love that has been shown to her and our family.  It is absolutely inspiring to see and feel that we are not alone in this.  We are not alone in the pain or shock.  We are not alone in being resolute to finding a way around this.  I will expound on that a little later.

I remember the start of 2013 clearly.  I had just gone back to work on the 2nd, a day earlier than I should have after my Mom had some surgery.  I was quite bitter about it and on my way home I rear ended a work truck in front of me because of icy roads and one of those complete slam on the brake sudden stops that 169 is so famous for.  How a highway can all of a sudden come to a complete stop right when you get over a hill is beyond me but it was done.  I had smacked him and his truck was fine, Derrick's Corolla was not.  I was so mad and so scared that I lashed out.  It was all Derrick's fault for making me go back to work and this was his birthday, he should have just let me stay home and make a nice dinner.  Now 2 hours later in freezing temps I was still sitting in a freezing cold car waiting to be picked up.  I could not and would not go into the tow shop because I could just envision the stares from the men about the "stupid" woman who was paying no attention and obviously following too closely to care.  When D finally did arrive we were utterly silent.  He knew that I was blaming him and because of the person he is he just didn't go there.  We spent the next two days in total silence.  Ha, can you imagine how awkward it is to move around your new house, try to find things, care for your children together and then go to bed together and still not be talking?  I look back on that and just find nothing but Grace.  My husband is the most forgiving person I know.  He bends over backward to just make things better and stays calm all the while I act a fool.  I completely ruined our car, his birthday and the start of a fresh new year.  I had so much anger that I couldn't just take it out on myself, it branched out to everyone around me.  This was also about the time that my Mom just couldn't seem to muster up any energy.  She was exhausted after having the kids for 3.5-4 hours and many times I would rush over there at 12:30 and round them up as fast as I could to be on my way home by 12:40.  I kept that up for months.  I couldn't understand her change and I was mad about it.  Mad enough that I was silent again about it.  I let things snowball and eventually we came to a blowout, I believe more than once.  I never stopped and listened.  I never looked beyond my own circumstance to really, really care what her's might have been.  That again is my biggest challenge in life and my biggest regret.  I can look back now and see that although 2013 was trying and at times frustrating, it ended with such love and shared passion.

The prospect of a fresh new year for 2014 scared me to the core.  I was jealous that everyone else had a fresh, clean slate to look forward to and we had a stained slate full of uncertainties and pain.  Each new day potentially bringing us farther and farther away from the woman we knew as Mom.  I looked into the future and projected it's appearance.  I did this for a few days and then my mind and body just couldn't do it anymore.  I started feeling urges and prayers started breaking through my thick head.  I had to sit down and do a bible study.  I had to start believing, really believing.  I had to keep living, enough so that smiling and laugher were the norm, not tears and being alone.  When you start to actually glimpse the face of Christ and allow Him to honestly infiltrate your life there is no doubt that a peace that surpasses all understanding finds you.  I've never had to do this at 31.  I have lived a safe, easy life.  The simple, childlike Bible stories were enough for me.  I am surrounding myself with glimpses of Heaven.  A great book that my husband finally read after years of me telling him he should is "Forever Ours", Real stories of immortality and living from a forensic pathologist.  Janis Amatuzio, MD.  It is so well written and so compelling.  I have read it at least 3 times but this 4th time I feel it.  I feel the anticipation and excitement for Heaven.  I believe that God's plan is greater than ALS for my Mom.  I believe that He can heal her.  I believe he is using this to His glory and I have finally stepped in line with that.  I also now know that if she does perish any sooner than I thought (95) I will be okay. I will be able to pick myself up and I will see her again.  In my dreams, in the stars, in the clouds, in Heaven.  No, this does not make everyday so easy but this life will never be easy.  That is why you surround yourself with people that have your back when you falter.  The day after Christmas Boston's in CR held it's ALS fundraiser with 10% of all food orders going to the ALSA.  My Mom's dear friend Jan organized it by sending massive emails out and spreading the word.  We walked into the restaurant that night and were surrounded by friends and family.  It was overwhelming in a good way.  Jan had made necklaces that either had our family picture on it or said "We Love the Hutchinson's".  My Alyssa thought Grandma was a celebrity along with her little friend Mila.  Every minute someone new seemed to walk through the door.  All in all, 83 total people showed up with some kind of connection to my Mom.  Some of my dearest friends showed up, Tim, Deb and his whole family, Keith, Sica and Mila, Jeff, Apryl, Avery, and Eric, Kim, Luke, Carter and Graham, Rob, Carrie, Logan and Layla.  Countless dear friends to my parents and all the while I watched my Dad shine and feed off of the support that was lavishly handed out to us that night.  All it took was showing up and just saying "hi".  No words were needed.  No sympathies, no awkward pauses.  All they did was show up and it said everything to us.

Right now the most common question I receive is "how is your Mom doing?"  Honestly, I answer with "really good, she is strong in mind, body and faith."  What I have been listening to now is the nitty gritty.  She struggles with frequent muscle cramps all over her body, especially her legs and her abdomen.  When she finally lays down at night, her muscles twitch and dance all over making it nearly impossible to fall asleep or stay asleep.  She has told me that she tires easily and that she can tell when she overdoes immediately.  She always has to use the handrails on the stairs.  These are very specific prayers that we are adjusting to now.  Life isn't the same as it was just a year or so ago.  Birthday dinners are now cut down to just the birthday person and their family because she just can't do big, elaborate dinners anymore.  And while this was too scary to face just a few weeks ago, I feel strong in knowing now.  I feel more compassion and more responsibility to do life better.  Not just towards my Mom but to everyone that I call "friend" in life.  It's time that I make meaningful connections of my own, ones that require leaving my safe little box that is now 9101 168th Ave.

We went up north and rented a cabin for my birthday this year and I noted to my husband how very adult I felt.  I mean, my parents weren't with us!  Ha, he quickly noted that we did invite them, they just weren't able to come.  I will always want my parents close by.  That is reality for most of us.  If ALS progresses and starts to tear my Mom down more, it will not be easy, there will be very dark days.  There will be self pity and more grieving.  I just don't envision them as I did a week ago, it's not just my Dad, Mom, Sister, Brother and I facing this.  It's a strong village that seems to come through at just the right moments.  It is being held by a mighty hand.  It is making a very conscientious choice to live for TODAY, for these three.

My nephew Jaxson.

My sweetheart.

My comic relief.  

Christmas is the time...

Christmas.  I blanked big time this year.  I don't think I bought but 2 gifts and I left the rest to my husband.  He cooked, he bought, he helped wrap.  I don't have the ability to work up the energy or the thought to put up much effort for most things this year but in that realization I found peace and contentment.  You don't need to put as much energy and time into it as you think you do.  I enjoyed the time we spent together as a family.  I enjoyed just sitting together and being comfortable and happy in the love that surrounds us.

We did good this year.  We didn't go overboard and the kids are happy and enjoying the fun gifts they got instead of being overwhelmed and scatter brained with too much.  We have most of it taken out and it has a spot in the toy room already.  They did great with the schedule being thrown out the window and no naps.  They slept long and hard last night and are refreshed and happy this morning.  I don't want to go anywhere and I don't want to do much besides eventually hop in the shower and relax.

We had family here yesterday until 6:00ish and it was good.  The kind of comfortability that found everyone on separate levels just enjoying a quiet conversation with eachother.  Cousins played so nicely together and even geared up in all their winter stuff to enjoy some sledding behind the four wheeler.  By about 5:00 I was ready to get out of my jeans.  I realize that wearing scrubs for work and then coming home to sweatpants makes me very unprepared for wearing real clothes for any length of time.  I suppose that the overeating and indulging over the last few days didn't do much to help that either.

I appreciated the concern and genuine heartache so many showed for our situation.  Every hug and every comment just really stays on my heart and in my head.  I go to them in the dark moments and replay them when I pity myself for being so alone and heartbroken.  Days are getting easier.  I have realized that I am not one to push ALS out of my head.  I am one to ponder it and let myself cry over the reality of it whenever that may come up.  It usually comes up when I drive.  I listen to music in the car and I cry, not the gut wrenching pain that makes life seem impossible but the quiet, prayerful kind that reminds me that life is full of pain.  I get to my destination, pull it together and smile at my patients or my coworkers.  There is a constant tug on my heart and ignoring it is not the right way for me to deal with it.  Sometimes talking through it works but mostly I am a private pain kind of person and writing things down or reading helps.  You don't even have to mention much more than the fact that you are thinking and praying for us.  My kids are huge helpers.  My Alyssa is the most loving, caring little soul I know.  She always tells us how much she loves her family and she reflects and vocalizes that she is so happy.  At Christmas on Tuesday she had a plate of fruit and she brought it over to the table and said aloud "I am going to sit by my Mommy because I love her."  In the mornings when I am home she runs into my room and snuggles with me and tells me how much she missed me while she slept.  Just a small peak at her spirit.  My Riley is a glass half full kind of dude.  There is little that gets him down and I look to him for the reminders that life is good. He always write his name with a smiley face in the R, the dot of the I and the E.  One day he didn't really put a huge smile on the little faces more of a half smile line.  I asked him why and he said "because today was good, it wasn't like super exciting or super fun just good and I got in trouble a little bit."  So even when the day doesn't make you do cartwheels and sing Hallelujah, it's still worth smiling about and still worth appreciating.


I go back to work on Monday part time. It's not how or why I wanted to achieve part time but it's part time.  No, life will not be so easy nor perfect because I am home by 9:10.  I still have 5 or so hours of hard work at a very early hour and that never includes a break.  I will come home to my children who are revved up and at their peak for the day while I have already been up for 6 or more hours.  I will plan to see my Mom 3-4-5 days out of every week.  Although it never disappears from my mind that I am going to PT for her.  I will never regret being given the gift of more time with her or my kids.  At the same time I will never forget that this disease is in the shadows, quietly taking more and more until, what?  I would trade working PT in for FT the rest of my life if it could just go back to last year at this time.  Happily ignorant of the pain and heartache that lies ahead.

I have always been sensitive to the pain and sorrow around me.  I don't watch the news because it hurts to bad to see the world highlighted and illuminated in death and anger.  Just when you think that this world could not get any more broken you hear that someone shot up a kindergarten, that a very young girl killed herself, that a 3 year old child died of an enlarged heart, a baby was shaken to death.  This world is looking for something.  I know that one day every beating heart will face the same way, heads down, hands held up high.  It is my prayer that He finds His way into your heart.  I am seeing just what real faith and love is all about.  I realize it is easy to believe when life is good.  It is much harder to grow up and ask the hard questions and realize that we will never know the answer until we reach heaven and then we won't hardly care anymore.  I know heaven is real.  I know that we are going there one day.  Why then does it hurt so much to think of someone I love going there sooner rather than later?  I struggle with that these days.  I want heaven for each of you just not anytime soon.  I want you to claim that mansion that was built for you specifically.  I want to sing and hug in heaven, the human side of me just selfishly wishes He would make everything easy and clean for us down here and then take us up there.  It's so easy for me to believe in God.  Maybe because I was raised in it, maybe because I birthed 2 children and I can't even explain the miracle that it was without having Him in the equation.  Maybe because there is moments where I actually feel him carrying me through a moment where I feel so debilitated and so inadequate.  I don't think it matters why but rather just that I do.  I have definitely had some shaky moments with Him this year.  I have questioned Him and I then conceded that I will just never understand.  I think we need to keep things as basic and as black and white as we can.  It's when we probe and question that we start to make up things that were never really there.  God created the world in 7 days, He made man and then woman as mans perfect partner.  They sinned and the world has been broken ever since.  Sin was born and gets worse and more barbaric and ugly everyday.  He destroyed the whole the world in the great flood because of sin.  He gave very basic, very simple and straightforward rules in the 10 commandments.  He then sent His Son, so He would come face to face with what we deal with everyday.  He sees the brokenness and shame.  The devil has an easy stronghold these days.  We are swindled and sold into the gray more and more everyday.  It's time to shut it all off and just listen.  Be still, your heart will beat you the answers you need.  And when you can't discern the message He has sent those of us around you to pick you up and reassure you that you are not alone.  You were not meant to be here, your home is out there and it is eternal, sealed with grace and mercy.  My favorite lyrics from The Story "I'm with You".

We could shake our fists
In times like this
When we don't understandOr we could just hold hands

Many do not know much about ALS.  Most of my family and friends had to google it to see what it was.  A few went above and beyond by sending my Mom notes of encouragement and hope.  My SIL Sheri (I didn't ask her to include this but I hope she won't mind) sent the nicest card explaining that her Mother and my own reflect eachother so much in their selflessness and care for their children and now grandchildren.  She went on to explain that she did not know much about ALS but decided to buy a book so she could get a glimpse of the future for my family.  She sent the book to my Mom "Until I say Goodbye." Susan Spencer Wendel.  I think it was the first time that my Mom allowed herself to really look at the future and cry in the face of it.  I was happy to share tears with her over the sucky situation that is hers.

I feel so indebted to so many people.  You've held me up.  I wish I could be that role model of outstanding faith and hope.  Instead, I'm going to need help with that.   You've opened my eyes.

Jamming out to The Afters, Broken Hallelujah right now.  Realizing that life is one big corn maze.  We keep our eye on those we love and above.  Always, always stumbling and regaining our balance.

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.