Protecting Normal

I have found that the last two weeks have been the most physically and emotionally challenging.  We were told two weeks ago that Marc likely only had two weeks left to live.  Here we are two weeks later and are grateful to still have him with us.  We have braced ourselves for fourteen days, understanding that every day could be our last.  The unfortunate result of that mindset has been tremendous tension and anxiety in our home.  I have been irritable, the kids are fighting, and we are all exhausted.  By putting an expiration date on Marc, our minds became consumed with dying....not living.

Last night I sat with the boys in their room.  Bedtime is when their minds start to race and they have lots of questions and concerns.   Both boys expressed their wishes and concerns.  Things like....Dad is so thin it scares me.  I miss his voice.  I wish we could just have a man-to-man talk like we used to.  Nothing is normal.  When can we do stuff like we used to do as a family?

I sat for a little bit, listening to their hearts.  This summer has been hard on them.  We have spent countless hours at home, caring for Dad.   They have cabin fever to the extreme.  And yet, while being home all the time, very little about their time here has been very normal.  I had to admit to myself that I was feeling the same way.  I have been so consumed with Marc's care and the demands of the kids, that there has been little time to create times of normalcy in the house. 

The three of us trooped downstairs to say goodnight to Marc and to discuss some of the boys' feelings.  I was hoping they would get some of that man-to-man time they were craving.  The conversation that followed was a huge blessing.  The four of us sat and thought of ways that we could come together and just be a normal family.  We brainstormed several ways that we could catch glimpses of what we used to enjoy so much when Marc was healthy.  We know that it will never be the same, but in some odd way by listing things we can still do together we gained hope and a new perspective. 

So, first on the agenda this morning was breakfast.  Marc will often eat a simple breakfast in his room.  While we always do our best to make something he will really like, he admitted that eating by himself in his bedroom is lonely.  We decided to all wait to have breakfast until Dad could get up (late) and join together for a simple breakfast.  He was able to sit in the wheelchair and enjoy hot cereal with the kids.  Having everyone eating the same thing at the same time seemed to bring us happily together.

We came up with other ideas, too.  Having movie night together.  Instead of heading upstairs to the bonus room to watch movies on the big screen, we decided it would be fun to pile on Dad's bed and watch movies on his computer.  The boys decided that when they read a book, they can sit with Dad on the couch and read to him.  We thought it would be fun to make cookies that Marc can eat.  Instead of chocolate chips cookies with nuts, we will make a softer shortbread that he can easily chew and digest.  While each activity is a shadow of what used to be, it also protects what is normal for our family.  And, instead of focusing on what will inevitably come, we can focus on the unpredictable surprises of  lives being lived.

I am grateful today for my sons that reminded me that each day is about living.  None of us know when God will call any of us home.  By worrying about tomorrow, it has threatened to rob us of the joy of today.  Despite our circumstances right now, we are going to do our best to finish strong with our amazing Dad and husband. 

Thanks for the continued prayers....
With love and gratitude....

Catching our Breath

I am relieved to report that this week has been a vast improvement over last week.  It hasn't been without a few bumps, but overall the last few days have been really manageable.  I have been able to manage without a hospice nurse since Saturday.  He had improved so much in those two days that the nurse had little to do. It seemed like a waste of resources to have the nurse hanging out, playing tea party with Sophia.  Though, that was a different break altogether for me!  

Thankfully he is resting well and is in little pain.  He is extremely fatigued and still losing weight.  Yesterday he was down to 128 pounds.  This makes it hard for him to stay awake or to move much.  He has moved to the hospital bed and seems to be much more comfortable there.  I had thought that would be a difficult transition for both of us, but it ended up being a positive one.  He is more able to adjust his position and the mattress is much softer and provides a lot more cushion.  Having him comfortable is cause for celebration around here!  The fact that he is absent from our bed seems a trivial loss in comparison to gaining some relief to his aching back.

The kids were disappointed this week that Dad isn't ambulatory any longer.  They wanted to show him how much the pigs had grown and what was growing in the garden.  They had visions of putting him in a wheelchair and wheeling him around the property.  All I saw was four children fighting over who got to push the wheelchair and the bumpy terrain between here and the barn.  Not a pretty mental picture!  Instead we opted to take the camera out with us during chore time in the evening and took pictures.  We then had fun bringing back the camera and sharing all the pictures with Dad. 

Thought you all might enjoy a happier vision from our homefront --- a slice of normal life.   Here are some of the photos that made Marc smile....

Kids and Hurley resting after a game of tag

Hurley Dog on the run!

Black Beauty saying hello....

Merrylegs and Superfudge checking out the slop status

Exploding Garden!

Some sugar peas the kids missed while snacking in the garden

Our first red sunflower!

Julia "fishing" for apples

Bumblebee working hard on the lavender.  The kids and I have had a lot of fun watching the huge variety of bees in the garden this year.  We find them all fascinating little guys. 

Uninvited guests (not as fascinating as their garden loving cousins) ......

Plus my crazy brother and doubly crazy friend....

Equals some serious Estacada-Red-Neck fun!  Woo-hoo!

Well, that about sums up life on the farm this week.  It was enough to bring some smiles to our faces.  Thank you all for your prayers this week.  Things eased up -- prayers were answered.

With love and gratitude....

Stupid Tumor, Cannon Beach, and Angry Me

I hit my wall this week.  Seems like the stupid tumor got the best of us in the last few days.  It appears that the tumor has progressed and has grown enough to block his gastric tube.  That means that nothing was draining from his stomach and he reverted to vomiting.  Back to square one. 

Watching Marc struggle with another setback put me over the edge.  I found myself suddenly angry and overwhelmed.  It just seems like too much.  Tuesday, our hospice nurse came out and she outlined what is happening and prepared me that our time is likely short.  Again, I found myself angry.  So, I did what any mature person would do and took it out on everyone around me.  By Tuesday night at bedtime I had ranted at my kids and was short with Marc. The whole house was upset....just because of me.  Nice.

Wednesday, Marc decided he would like to go to the beach.  I think he envisioned another day like we had at Timberline a couple of weeks ago.  So, we headed off for Cannon beach to spend some time alone and to get a break from the kids and house.   Well, for as beautiful as that day was, this one was...well....not so much.  He was so sick the entire time we were gone.  By the time we got home his pain and nausea were out of control.  It took all the pain drugs in our arsenal to get him comfortable.  He spent the night vomiting and sleeping fitfully.  It was a long night.  I was just more angry.

Yesterday, I  finally called in hospice.  We decided it is time for more consistent care and for safer equipment.  We will be getting a hospital bed and a few other things to make him safe and more comfortable.  I will also have a nurse for eight hours a day to help offset the work.  I realized that I can't do all of his care 24/7.  I had reached the end of myself.  The heaviness of the job in front of me, coupled with a lack of sleep, had contributed to my foul mood and inability to cope.  I needed help.

Well, for as dark as the week started, it appears we are getting a break and things are looking up.  Our nurse, David, came for the afternoon and evening last night.  He was a huge help. It was great to be able to turn things over to him when I had my hands full with the kids or was too tired to get off the couch.  I became a bit less stressed within an hour of his arrival.  The best part was that we got the tube working again and he stopped vomiting.  He slept (and therefore, I slept) through the night!   This morning looked much different around here.  He is comfortable and rested.  Angry Me has taken a deep breath and relaxed.  Now....off to apologize and make amends with my family......Ugh...the consequences of bad behavior....

Thanks for the continued prayers.  We obviously need them!  Please pray for Marc's comfort and peace right now.  And, please pray for me.  I would really like the self control to not throw another tantrum the likes of what we saw this week.  Not fun!

With love and gratitude....

Doctor Appointment

I received several calls today, asking about how Marc's doctor appointment went today.  Unlike previous appointments, when we learned critical information or had to make difficult choices, this appointment was just to touch base with his palliative care doctor.  Many of you have asked what role the palliative care doctor plays.  Basically, his role is to handle Marc's pain and help him achieve a level of comfort during the dying process.  There are no more tests, no more waiting for results, no more treatments.  This doctor works with Marc and with hospice to make him as comfortable as possible.  I am sorry if many of you misunderstood the objective of the appointment today.  We truly hope we didn't  mislead anyone into thinking we are pursuing more options or treatments.  Any cure for Marc's cancer from here on out will not rest in the hands of doctors, but in the Lord's.

Thank you all for continuing to care and to pray.   We are blessed by every single one of you.

With love and gratitude....

FAQ

I have received a lot of phone calls this week, which means I haven't been keeping the blog up to date.  I have noticed a theme when it comes to the questions that everyone is asking.  I thought it might help if I answered  the most frequently asked questions here. 

Q.  How are Marc's spirits?

          Marc continues to be at peace with his decision.  His spirits are good.

Q.  Is he eating?

      Nothing of consequence.  His last real meal was June 18th.  He does eat liquids and semi-liquids.  His hydration comes primarily from an IV bag given overnight.

Q.  So, is he gaining any weight?

     No.  He is currently at 143 pounds.

Q.  Does he have any energy?

      No.  He sleeps most of the day.  He saves his energy for an occasional outing, watching a movie with the kids, or seeing visitors.

Q.  How is his infection?

      Much improved, but not completely resolved.

Q.  How are the kids?

      They continue to amaze us.  They are communicative and aware of all that is happening.  They grieve everyday like the rest of us.  They also laugh hard and play every single day, too.  We are assured this is normal in a child's grief process.

Q.  How are you?

      I'm tired, but doing fine.

Q.  No, really, how are you?

      Really, I'm doing fine.  I have my moments, but God gives me the strength and courage for each day.  Like the kids, I grieve each day, but also find joy each day.  I am weak, but He is strong.....

Q.  Do you need anything?

      Some days yes and some days no.  Our needs vary from needing an errand run or help on a project, to just needing time alone with our little family.  It's a moving target.  I promise if we do need something, we will ask.  We are getting better at asking.  Promise.

Q.  How can we be praying for you?

      Also a moving target.  Depends on the day...the minute.  Probably the biggest thing we need prayer for as a family is continued peace, strength, and courage, in the days ahead.  That covers a multitude of smaller issues that come up on a daily basis. 


Thank you all for your continued love and support.  We are grateful for all of the concern and prayers. 
With love and gratitude....

Communion

And he took bread, gave thanks and broke it, and gave it to them, saying, "This is My body which is given for you; do this in remembrance of Me."

Likewise, He also took the cup after supper, saying, "This cup is the new covenant in My blood, which is shed for you."

Luke 22:19-20

We had another amazing day today.  Our family, dear friends, and the elders from our church, came for a time of worship and communion.  It was a powerful time.  I think the picture above pretty much sums up the last 18 months for us.  This circle of loved ones is just a snippet of what we have experienced.  I love this picture.  It's a humbling place to be at the center of this circle.  Thank you to all that prayed over us today.  Thank you to all that have continued to pray for us every day from around the globe.   Experiencing Christ's spirit at work through the body remains overwhelming.  We are blessed.

With love and gratitude....