Wednesday, November 28, 2012

The Red Tree

Every year, on the day after Thanksgiving, my hubby would climb into the rafters to pull down all our boxes of Christmas decorations.  This year it was two days after Thanksgiving that I climbed into the attic to fetch the boxes. 

"Not bad."  I thought to myself, somewhat proud that it was only a day off from what was our annual tradition.

One by one, I pulled down the boxes which were labelled with permanent marker in my husbands handwriting, "Christmas". 

Once all the boxes were brought down, I realized that I didn't need the smaller white tree that I had set up in our bedroom the previous year.  I had the tree in our room, so that my husband could experience Christmas from the bed.  The thought of having the tree in the room reminded me of all the nights, that we said 'goodnight' to each other and I would roll over and stare at the lights of the tree with silent tears rolling down my face. 

I mentioned to my youngest that maybe they could put the small tree elsewhere in the house, and he said, "No, Mom, that tree goes in your room."

"Honey, we just did that last year but it's not tradition or anything."  I replied.

"Yes, it is Mom", He argued, "It's our new tradition." 

"Okay, sounds good.  We will put the little tree in my room." 

Looking through more of the boxes, "Oh, look!  Your Choo-Choo train!"  I exclaimed.

This was the train that we set up around the main tree ever since my little-one was 4 years old.  Every year the sound of "All aboard!" and the train's whistle filled the house. 

"Oh, I don't think we need to set that up this year, Mom."  My child says.
"Are you sure, Honey?
"Yeah, let's just keep it simple."  He replied. 

Then, I open the big box.  The one with the big, white tree that goes in our main room.  I am so excited.  I love how the tree glows, so bright and pretty.  I begin to pull the tree out of the box when I see that large portions of it had become discolored and yellow.  All these years, we have stored the tree in the same manner, and it has always remained pristine.  Why now?  I wonder to myself. 

I tell myself that it has a sweet, aged appearance, it's like an antique effect.  I proceed to set up the tree.  As I arrange each branch negative thoughts begin in my head.... 

"Why bother?  You know you feel sad.  Nothing will ever be the same without him here, not even the tree.  The glorious tree.  It's all gone now.  Who even cares?"

My thoughts run away with me as I put each ornament on the tree.   

"Do it for the kids.  But, where are they now?  Oh, yeah, playing video games, while Mom decorates the tree all by herself.  Well, you better get used to it, after they leave you will really be alone probably too achy to get up into the rafters at all!  Then what are you gonna do?  Your a real piece of work thinking like this.  Isn't this suppose to be about the wonderful gift of Christmas?  So much for that!"

"Whoa, Mom!  The tree looks great!"  says my oldest, coming up the stairs.
"Yeah, great, if you like 'the dog-peed-on-it look'."  I said flatly.

Finally, I plugged it in and all the lights twinkled and it glowed again.  The next morning, I walked by the tree.  Only noticing the yellow stains.  This doesn't look antique at all.  It looks horrible.  Maybe I should just go buy another tree.  But, I don't want to.  This was 'our' tree.  Here come those thoughts again....

"The tree doesn't look bad with its lights on.  Whenever visitors come, just turn on the lights.  You should be happy, you should be grateful.  Stop being so superficial.  It's just a white tree with enormous yellow stains.  But, I don't like it.  What are you going to do, be bothered by it all season?  Do something if you don't like it.  I miss my hubby."

Then it came to me.  One-by-one I took each decoration off of the tree.  I ran down into the garage, my feet cold on the bare floor, searching through my husband's shelves of this and that.  Until I found it!  A can of red spray paint.  Shaking the can and hearing the ball bearing rattle against the edges,
I thought, "Oh yeah!  I'm gonna do it.'

I placed the tree, in all of its yellow and white glory onto the balcony, still shaking the can of spray paint, more thoughts ran through my head...

"If he was here, he would not like this at all.  Maybe you should test the wind direction. You're probably going to get paint on the deck." 

I began to spray and immediately the tree started to look better to me.  I kept going, like a frantic artist on a masterpiece, like a street graffiti artist tagging in the subway.  It felt good, really good.  I could almost feel my hubby saying, "You go girl!  Do what you gotta do!"

Not sure how many people can say they spray painted the Christmas tree.  In the end, not one drop got on the deck.  I walk by the tree now and think it looks "different" which is fine with me.  Maybe next year I will get a new tree, or just buy a can of gold spray paint...  Good, bad, or ugly, I realize that I was marking the moment of new traditions yet to come.


Saturday, November 3, 2012

On This Day, Last Year: Details from 11-03-2011

With my husband in the end stages of Pulmonary Fibrosis, I tend to write about the emotional side of things and often gloss over the physical parts of dealing with this illness.  Many people who suffer from this disease have different courses of treatments to try and experience a wide range of issues.

For my husband, he was diagnosed just a little over a year ago and during this time last year, he was able to rake the leaves on the lawn and was still embarrassed about using his oxygen in stores or public places.  He was on 2 liters of oxygen back then. 

At that time, he was the first one up in the morning to bring me my coffee and throughout the day created his own schedule of getting cleaned up for the day as well as helping out with dishes or watering plants on the balcony.

As time progressed and we received more assistance from in-home care, he no longer prepared his breakfast or lunch as to reserve his energy.  He also took physical therapy and learned exercises in order to retain his lung function.

Slowly, the level of oxygen he needed increased.  He would sleep on 4 liters and go up to five, while awake. 
Then, about a month ago his SAT's seemed a bit lower and we had to go to 8 liters during the day and 6 at night.  Pretty soon, anything that had to do with movement took great effort from him.  Such as washing his own hair.  So, I pitched in to help him with this. 

About two weeks ago, he needed a bit of assistance getting to the bathroom.  Someone to hold his arm as he walked there. 

As of last week, at 100 pounds, my husband was carried to the bathroom for his last "real" bath and since then, he cannot leave the bed. 

What is it like to be in end stage Pulmonary Fibrosis? 

At this time, he is on 12 liters of oxygen at rest.  Things like sitting up or moving his arms cause his SAT's to drop down into the 50's.  It takes additional oxygen through the mouth to get them to slowly climb back up.  He no longer craves big, juicy steaks and now sticks with small portions of nourishment that are bland and easy to digest.  Eating also causes his oxygen to drop.  Water or Pedialite must be dropped into his mouth with a straw as sometimes, he cannot hold the cup.  He is given Morphine, orally, to help with the oxygen craving.  This helps him to sleep and forget that he has to work so hard to breath.  This will become our primary course of action to assist him as he progresses even further.  

We have a schedule.  Periods in-between his personal care and rest, when he enjoys spending time with family.  He is all there, mentally.  He responds well and knows exactly what is going on although he does forget which day of the week it is.  When I squeeze his hand three times for... I Love You.... He always squeezes back three times.  Even when he is asleep. 

Every morning when he awakes he is always thankful for another day, which amazes me...his desire to live.  

For us, that is what it is like to be in end-stage Pulmonary Fibrosis.