Crossing the Gulf of Grief

I awoke this morning to find myself marooned in a gulf of grief.  A week ago I woke up and went to be with my Mom.  What a great honor I had last week, to be in the presence of my mother, to be able to serve her. To comfort her when she was in pain and to spend time with her through her greatest struggle.  Every minute was a blessing and I was fully engaged even though my sleep was so diminished.  The spiritual strength I felt propelled me through my days and I felt energized.

The thing about this journey we are all on, is that the emotions are so big and the heartbreak so deep it is much like being in the ocean.  The waves can pull you to areas you do not wish to venture and right now I don't have the strength to swim to a patch of faith.  Today I am sad, beyond sad, I am heart broken.  Grief continues to wash over me and today I believe I need to allow that to be where I am. 

I am learning to allow myself tears, pain, heartbreak to let myself feel it in its entirety and then to put it in its proper place.  My beautiful Mom is dying and it is going to change all of our lives.  My heart will never be the same again.  I know from past loss in my life that the raw edges of my grief will heal with time, but the ache of loosing this center part of my life will never leave me.  I think a part of my soul will always grieve this loss.

There is a double edged sword from having someone so influential for good in your life.  You have the benefit of having this greatness mold you, form you into who you are.  They are a part of so many every day moments that you often don't even realize the impact until you are faced with the loss.  I have been so blessed to have my Mom infused into the details of my everyday life for so many years.  I have spent so much time with her, just doing simple everyday things.  We have a real mother and daughter relationship.  I know I have frustrated her and annoyed her.  I know we have not always agreed on everything, I know this is normal.  But she has always been in the details.  I have not gone more than a few days of my life without talking to her. 

So the other side of that sword then falls.  I went to the Library with Logan yesterday.  My Mom worked at the Library, it was her dream job, she loved it.  She loved having the kids come to the Library to show them off, and she made her mark in that place.  The thing is this was not her library, I was walking into my library in Colorado.  Still since I have moved here going to the library has always made me think of her.  I can imagine her being there and I always smile and usually call her when I get out to tell her I miss her.  Yesterday, it was all I could do to not fall into a crumpled mess on the floor.  I was biting back tears the entire time.   I talked to her yesterday on Skype and I could have just watched her face forever, listened to her voice.  In the hospital I held her hand as much as I could.  Tried to memorize what it looked like and felt like.  Because the reality is, all though I know fully that she will be at peace, that I will see her again someday and that she will be with me, I won't be able to touch her.  I won't be able to call her and hear her reply when I have a triumph or a bad day. 

I have great faith in her destination.  I know God is mindful of her and of each of us.  I know He loves us deeply.  I know all of this is part of the plan.  But no matter how old you are you need your mother and my heartbreaks to be loosing mine. 

She has been so worried about all of us, about her grandchildren and their deep emotional reactions.  I keep telling her, that it is really a tribute to her life and influence.  Because of her greatness we are feeling great loss.  Today I am in a Gulf of Grief, I will find the strength to swim to the patch of Faith, because that is what she would do.  That is what she always does.  But for this moment I am going to cry.

Huntsman and the Next Steps of the Journey

To say that the last week has felt like a year would be an understatement.  This time last week Mom went into the doctor.  She hadn't been able to eat or keep food down.  She was weak.  They decided they would do a permanent feeding tube.  My family was traveling to Utah from Colorado and I was receiving updates along the journey.  After receiving her feeding tube she needed a blood transfusion.  Her red blood cell count was low.  Her white blood cell count was also low, like zero low.  We were concerned.  David had felt in December that we should make a trip out over Presidents Day.  I will forever be so grateful he listened to the spirit and we were able to be with my Mom. 

 

I arrived at the hospital on Saturday morning, she was tired and sore from the incision point for her feeding tube.  One tube was put into her intestines and the other was a drain tube into a bag to help relieve pressure in her stomach and bile.

 

The last seven months have taken a toll on her tiny body.  Cancer is an evil and vicious beast and she has been fighting so diligently.  She had a fever.  The white blood cell count was low.  It seemed like nothing was going well.  Her legs are swollen from retaining fluids and her mobility has been so greatly limited because of pain. 

 

We stayed at Huntsman until Tuesday afternoon.  It is a lovely facility with amazing and caring doctors, nurses and aids. 

 

On Sunday, her counts weren't looking good, she started the tube feed and her body wasn't tolerating it very well.  They also believe she has a rare enzyme that was not allowing her body to tolerate the FauxFox Chemo treatment. This treatment was her best option for dealing with her Esophageal Cancer.  She was discouraged and trying to fight what seemed like an uphill battle.

 

That night all night long she grappled with the decisions she would have to make.  She talked to the Lord and it was a very holy and spiritual place that night as she worked through what to do.

In the early morning hours she had me call the family together.  She informed my Dad first and then each of us that she felt it was time to forgo further treatment and to be placed on Hospice Care.  She was at peace and she had a spirit of forceful grace over this decision. 

 

For our family it was a day filled with heart break and peace.  The dichotomy of these feelings is so interesting.  To know that this was the right course and yet to hate the decision in the same moment.

 

She as always is strong in her faith.  Once she received confirmation from the Lord she was fiercely determined in the direction to proceed. 

She told us, "I know we had hoped for a Miracle, but this was not what the Lord wanted."  My father answered with, "The Miracle is you.  We have been able to have you in our lives, she has influenced everyone of us so deeply."  The miracle truly is her. 

 

She arrived home on Wednesday.  She was nervous.  She told me.  "I am at peace and confident in my destination, just nervous for the journey ahead."  We know all things will come together for good.  There have been so many tender mercies a long this journey.  We are continuing to see the Hand of the Lord.  They have been able to arrange for the Hospice Care nurse to be Kathy who helped with my Grandmother when she was on hospice.  Breanne has been able to take extended work off to assist her in her care.

 

As always my beautiful mother is finding reasons to smile, this one as she sits in the sunshine.  She gave me some beautiful advice sitting in the hospital.  She told me she wants me to enjoy every bite of food, every moment.  To not get so hung up on things that I don't enjoy living.

The Journey has begun, it is in a different direction than we have hoped.  Our hearts are breaking.  Our children are sad.  When Jacob found out he ran downstairs and hid under his blankets.  I could totally understand, I wish I could hide away, make this not be happening.  Ethan stood in the hallway of the hospital crying in my Dad's arms.  He said, "It isn't fair she is the most selfless person, and she is always so kind to me and to everyone." 

My niece Cora captured our thoughts so well.  Alisa relayed this to all of us.  "When I tucked Cora into bed she had gotten into her bank and had all her money out.  She said she wanted to give it to
Grandma because Grandma has given her so much and she wanted to give her something but didn't know what to give."

I keep thinking of the words in the song,  "Be Still My Soul." 

 Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev'ry change he faithful will remain.
Be still, my soul: Thy best, thy heav'nly Friend
Thru thorny ways leads to a joyful end.
 
 Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.
 
Be still, my soul: The hour is hast'ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.
Text: Katharina von Schlegel, b. 1697;
trans. by Jane Borthwick, 1813-1897
 
To all of our dear friends, to the angels of mercy who are continually blessing our lives, to all those who have been praying and wishing for good.  Thank you!  We feel your love, your strength and that power of those prayers.  God is watching over us, and over our beautiful and sweet mother.  Our prayers may have changed to one of peace not healing, but our faith and her faith is ever the same.  God is good!
 

Monday Mom Update

It seems like these days end up feeling almost long a month.  Mom has struggled following Chemo last week.  She had difficulty keeping anything down and was throwing up quite a bit.  Her anti-nausea medicines have been helpful and she has been trying to eat. She also received some IV fluids last Friday. The family in Utah are amazing and have been with her night and day helping her through this time.  She has developed some bed sores from sitting too much and her leg has been swollen as well.  They have done an ultra sound to make sure she doesn't have clots and think it might just be from not elevating her legs. 

Her back has hurt for months, most likely from one of the tumors, and it has been more comfortable for her to sleep in her chair.  But this has caused other issues as well.  Alisa said the most beautiful and strong thing to Mom last week she said, "You are going to have to fight as much as you can and then we will pull or push you the rest of the way."  She is fighting, but so are each of us to help get her the rest of the way.

Progressively though over the weekend she has shown some improvement.  I received a text on Saturday that she had eaten 5 bites of food.  We had a little party here in Denver.  Small steps are cause for celebration.  Today she has done even better.  I received a text that she had eaten 10 bites of ground spaghetti and it had tasted good (because of the stint she had to have it ground up).  This was another tender mercy.  She rode in the car for two drives today and even was able to lay down on the couch for a few minutes tonight. 

She continues to feel discouraged, I mean who can blame her.  So many things seem to keep going wrong, but she told me today that yesterday she was feeling discouraged and she prayed that she would be able to make it through this.  She had a dream that she was able to walk upstairs, and do dishes and other things in the kitchen. She felt like that was Father in Heaven letting her know things will improve. 

Throughout the last few weeks I have really reflected about what matters most.  So many of the things I worry about on a daily basis, matter so little when you are face to face with mortality.  When I heard Mom talk about her dream and the tender mercy it was for her, I thought how much I take for granted, like that a cookie tastes good to me.  That I can get up on my own and walk into my kitchen to work.  That my body is my own and not inhabited by Cancer.  I am learning so much from watching my Mom navigate this treacherous storm, I wish she did not have to cross through these tumultuous waters and yet I am in constant awe of her ability to do it gracefully. 

Kindess

Breanne sent this to me today.  It came from one of ther friends and it is a beautiful reminder.

Our Family

This is a personal thanks I am sending out on a very cold Colorado night.  I am here, wishing I could be in Utah.  Wishing I could help and yet my heart is so full as I think about the amazing family I am so blessed to be a part of.   We had a conference call last night with all of my sisters and brothers.  Every detail is discussed on these calls.  Everyone is taking a day or a night to be with Mom and Dad.  Everyone is taking off work or rearranging schedules.  I am so thankful for all the employers who are being so supportive and genuinely kind in allowing us to care for our mother.  But it isn't just our siblings it is the support from our spouses that is truly amazing as well.  Thomas & Erin have been visiting on Sundays.  Brynn is with Mom right now, Dan went to work at 4:00 am so he could be home so Alisa could be with Mom this afternoon. This is just this week.   David has continued to make sure that if I need to leave he pulls things together.  Are family rallies, it is what we do.  But I am in constant awe of my brothers, sisters and our sister and brother in laws.  They rise to meet every challenge.  They are a force of good in the world and I am so thankful for all of you.  May you all be blessed tonight and thank you for all you are doing.

A Hard Day

Chemotherapy has been really rough on Mom yesterday and today.  She has had a difficult time eating and keeping anything down.  Part of this is the Chemo and part is probably the giant tumor in her stomach.  It seems at every turn this just keeps getting harder.  She commented, "Why can't any of this be easy?"  We had some discussions today about the possibility of a feeding tube, but Dad decided to talk with Bill Dunsen (Friend, Doctor, our Hero) he suggested being vigilant with the anti-nausea medicines and doubling up on two of them.  If it still continues to be difficult for her to get nutrition they will go the IV route first.  Mom is fighting, but she is tired and this is so difficult.

Dad helping Mom walk into the house after Chemo

Mom, trying to get comfortable after her 1st round of chemo.

 

1st Round of Chemotherapy

The Ward "Heart Attacked" Mom and Dad's house to send their love.

This was during the Pre-Chemo kick off party last night. 
I love my Mom!

Alisa made this Chemo quilt for Mom.  It has all of our names on it
and the kids hand prints embroidered on it.  So she remembers we
are with her.

The view from Chemo stations at the Huntsman Center.

Mom hooked up and ready to go. 
Today  her Cancer is going to get a good kick
from Chemo.