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.