Life

I hate writing this.  I hate that this is happening. I hate that life isn't fair. I HATE THIS!

I've mulled these words over and over in my head for 24 hours.  Thinking about them seems less final then writing them.  I've been asked to write them and so I will, with a heavy heart, a lump in my throat, and tears down my cheeks.

Scott is dying. His time on earth is nearing the end.

Scott has been rapidly declining over the past month.  I would estimate that over the last few weeks he has spent as much time IN the hospital as he has out.  It's been frustrating and hard for all of us, because it seems like treatments weren't helpful and options were running out.  Now we know that they have.

Scott is not a candidate for a liver transplant and there is no other plan or treatment. 

At his last visit in the hospital, about one week ago, difficult, heart wrenching discussions happened.  The conclusion was to take Scott home and make him as comfortable as possible.  We all feel like this is the best, and are trying to do this. 

Hospice services were initiated last Sunday. I can't express our gratitude for the compassionate and above and beyond services they have given to Scott.  Janiece comented today that over the last few days Scott has been more comfortable then he has been in months.  I think this is true as well. Scott has suffered enough and we are grateful that we can lessen this suffering somewhat. 

I know you are all probably wondering why Scott can't get a liver? 

There are many reasons including his BMI is too high, he does not heal well, and he is very prone to infection.  These obviously make him a very high risk patient and surgery would be very difficult.  I personally don't think he would survive such an invasive and long surgery. 

Scott is full to the brim of fluids.  He has gained a lot of weight in the past few weeks--eating hardly anything, yet retaining fluids.  His "water pills" aren't working.  All day long he only urinates a few ounces despite the medications.  His body isn't functioning the way it should.  The fluids stay and the scale goes up. His skin is taut and hard.  His pores are weeping fluid.

Scott has had pain everyday recently.  Most of his pain is related to his amputed leg.  He has a lot of muscle spasms in this leg and nerve related pain.  This isn't going to get better with a liver transplant.  Quality versus quantity?

Scott is weak and confused.  He is in bed 22+ hours a day now.  When the liver fails, it can cause an increase in ammonia levels in the body.  Scott was taking a medication called lactulose that helped him rid his body of the excess ammonia by making him, basically have constant diarrhea.  This medication was stopped about three days ago and the signs of a high ammonia level are more and more apparent today.      

Our family has been gathered by Scott's bedside.  Having "family sleepovers", good talks, and grieving together.  Yesterday, we watched family videos and cried and laughed. 

Death is inevitable for all of us.  The only thing that is certain when we are born, is that eventually we will die.  I'm not afraid of dying mostly because I believe that life doesn't end when we die, just...changes.  However, I am afraid of being mortally seperated  from my children.  My heart aches for Scott because of this.  My heart aches for his children growing up without their Dad.  I think of all the things Scott will miss out on and I feel like I just can't bear that pain....and it's not even me. 

Our Mom is crushed.  It's not "natural" to outlive your children.  My Mom is going straight to the top of the top in Heaven, I believe.  I think I can say with confidence that this last year has been pretty terrible for her.  She went from caring for her mother and being with her when she died to now caring for her son and watching him die.  It's just not right.  Her pain is evident and the pain is both emotional and physical.  This literally hurts every fiber in your being.

Our Dad is dealing with this the way he always does--by serving others.  He is staying busy and doing projects around Scott and Janiece's house, never going more than a few feet away.  I know if he didn't keep his mind and hands busy that this would break him on the outside too instead of just the inside. I know it rips him apart to see his oldest son, only boy, dying. He slept on the floor last night just outside of Scott's room, not because there weren't any beds available but because he and all of us want to stay close.

Janiece, oh where do I start?  This life she was thrust into has not been easy. She has lost so much yet continues to give.  You don't ever imagine that this would happen to you, yet for her, it has.  She has moved forward with faith and courage and been the rock that her children desperately need and no one else could fulfill.  Being a caretaker is hard, and Scott has been hard to take care of.  We LOVE you Janiece and will always be here for you now and forever!

Shaunie, Shelby, Shaylie, and Mick. My sweet nieces and nephews.  How I grieve for your innocence and childhood that was taken to soon from you.  You have endured things most adults will never face with a maturity that I can only believe God prepared you with.  Your Dad will live on through all of you.  I imagine the future filled with your babies being told of Grandpa Scott with fondness and tears in your eyes.  I know if your Dad had a choice he would choose to stay on this earth to be with you.  I truly wish that he could. 

We can never take your Dad's place, but the Newman's will be here for you in thick and thin.  I hope when you see us at all of life's important events your Dad's love with eminate through us.  I pray for courage for you in the next few days.  Be strong, remember this isn't the end.  We will see Scott again and he will be whole--completely healed and happy. I believe he will always  watch over you and be cheering you on from the sidelines in Heaven.  He'll be there when you show your steers.  He'll be there to see you graduate.  He'll be there in a different way then we want, but I know he'll be there. 

It's hard to die sometimes.  We have no idea how many hours, days, or weeks Scott has left on Earth, but we are trying to make his last moments the best as possible. I truly pray that Scott's passing and therefore healing, can come swiftly and mercifully, I ask you dear loved ones to join me in this difficult prayer. He has suffered enough.  We have suffered watching him.  Pray for peace for him and for his family.  I can't imagine this going on for very long, but only God knows, and we are trying our best to trust in His perfect timing. 

1 John 5:13
"These things have I written unto you that believe on the name of the Son of God; that ye may KNOW that ye have ETERNAL LIFE and that ye may believe on the name of the Son of God.