Since You've Been Gone~ 5 Years

Well, Honey, here we are at the 5 year mark since you passed away.  It is just you, me, and time here to commemorate this occasion.  Not sure what to do.  A part of me wishes we could raise our glasses and make a toast.  Maybe to wish each other some form of congratulation.  It really should be that way.  It may sound strange, us, clinking glasses to your leaving this world.  All I know is, I was able to survive thus far, and that has got to be worth something…

I mean, it hasn’t been easy.  Trying to embrace life became my own battle of survival.  I don’t think I am all the way there yet.  Not sure anyone gets “all the way there” in this world.  But, I have come a long way, went out on a limb or two and took some chances.  I learned to laugh in rough situations.  Began to think about my future and make decisions for me. 

As you already know, I tried dating this last year.  Only one person, and you know that took a lot for me as I have not been with anyone since you.  It was, shall I say, interesting?  I didn’t stay closed off and I opened my heart, so I am proud of me for that.  It was nice to feel pretty in someone’s eyes again. 

Still, I will never forget your eyes.  How blue and sparkly they were, the way I could see your love for me within them.  So far, Baby, you have been the best man that I have known.  Such a stand up person.  I don’t overly romanticize our love, because I also remember the look in your eyes all those times I annoyed you as well.  I still wish you were here.  I still draw hearts on my misty bathroom mirror for you.  This morning I saw the snow fall, in big heavy flakes, and my heart went to thoughts of you.

Everything I do, from raising the children, to taking care of our home and even opening my heart, I still feel that you are my confidant.  You are the person who really knows what’s going on and what it takes for me to do these things.  I believe that you help guide me.  Thank You for that.  Even though you died, I know you never truly left me. 

Let’s raise our glasses, Baby, and make a toast.  First, To Life~ which brought us together, what an amazing thing life is!   In its complete beauty that people and their generous spirits can impact the hearts of so many others.    To Us, My Darling~ and all the things we have accomplished and are still working towards no matter how simple, profound, easy, or difficult.  And Finally, To You~ for guiding me along, never abandoning me, and to your beautiful blue eyes.  

Until we meet again, my love,

~Breathing

Since You've Been Gone~ 4 Years

Hey Babe,

It is hard to believe that 4 years have passed since you left us.  In a way, I know your not very far away and I can feel your gentle support as I make my way through life.  

When you first left, I remember sleeping.  I slept as I never had and someways, now that I think about it, I probably sleep-walked through the entire first year.  It was probably my body's way of recovering.  As time passed, I, then had trouble sleeping without you.  Staying up to the wee hours of the night and awakening before dawn.  Each day was always a reminder that you were not there.  

I made it a point to take road trips.  Less about the destination and more about the desire to prove to myself that I was a capable woman.  During the second year, I got myself a camera.  Nothing too expensive, but it suits me fine.  Since then, my camera has been my little companion.  I have always been creative, but when we went through your illness, I wondered if that part of myself had been lost.  It might sound strange but the camera saved my life.  I enjoy the beauty that unfolds each day and I enjoy the patience of photography. Being still.  

I still have a hard time with what seems like our shrinking family.  My oldest is now out on his own, following his dreams and working hard at it.  The youngest, is a teenager now.  Very thoughtful and attentive, although, as you know with teenagers, that only can go so far as they really need their space.  I try to remind myself not to rely too much on him and to learn to find contentment in my own space.  It is something I work on daily.  It is scary to think that I am completely on my own.  I think the hardest part about it is not being able to share things with another who understands me.  Certain thoughts and experiences to only be kept to myself.  I have found though, there is a beauty in learning to thrive within the serenity of my own soul.  

I have taken a few chances.  Recently, I bought a very old cottage to renovate.  One day, it might be my downsized home.  When I am there, I feel happy.  There is something about having a home that is just mine.  It is the first place that I have owned that I have not shared in raising a family, or as a married person. Lately, I go there and paint on a canvas.  Just simple abstract stuff.  But, again, that is another thing that I stopped doing when we went through your illness. It feels really good to blast music and just mindlessly paint.  It seems cleansing and healthy to me.  

I am trying to make the conscious effort to be a healthy person.  Not necessarily physically, although that is also coming along.  But more about, up here, in my head.  One of the best things I did recently is decide, that I do not want to be a martyr.  Yes, I am a widow, and yes, only you and I know the ways in which I still grieve.  At the same time, I have chosen not to be "In Mourning" my entire life.  It was a personal choice that needed to be made.  Since for whatever reason, I happen to still be walking on this Earth, should I allow my entire existence to be determined by your death?  I want to celebrate in my existence.  For instance, everyday, I have been playing music.  Recently, I started to dance to the music.  Really dance.  To feel my body come alive, to feel sexy, female again, elevated my heart.  I did this without guilt.  I found myself happy for a moment and I have decided that is okay.  I am still here, still ~Breathing.

I love you, Baby.     

L O V E

"If you are not too long, I will wait here for you all my life."

Oscar Wilde

Dear Darling, Happy Valentine's Day.  It has been three years and two months since I have kissed you.  I miss you, Babe.  I dream of you often.  As the years have passed~ Spring, Summer, Autumn and Winter continue to flow as scheduled.  The children are growing, fine young people.  Our home, still safe and comforting.  The river so surreal, a beautiful gift everyday.  Sunrise and sunsets, with birds flying and making sounds.  The fish jumping upon waves of diamonds.  Clouds, kissed by light, whisper and beckon .  

The Stars, though, as beautiful as they are, To me, do not shine as brightly.  However, the Moon, is as mystical and glowing~ as ever before.  Blooming and ever-changing, like a Rose.  

I could go on and on.  Words really can't explain the transformations that occur moment by moment in the daily life.  For You, words do not have to.  You penetrate my heart, existing in all that my senses allow. ~~~Breathing~~~

“There is a time for departure, even when there is no certain place to go.” 

Tennessee William

****Hello, this is Breathing, I just wanted to Thank You for all the support you have given to Pulmonary Fibrosis, as well as me.  My 'counter' indicates 13,208 people have come to my blog, from many different countries.  I hope our family's experience has helped to raise awareness.  I do know this blog has helped me through such a difficult time.  I have shared with you our experience and have never held back, because most of this I typed in 'real-time'.  Now, I have transformed a bit since my husband's passing.  Not too much, but just enough to somehow realize that I have many thoughts that are better realized in my own time.  I will not post as much here, but anything that seems newsworthy to our cause will not be ignored.  Thank You my beautiful friends.  You show support just by coming here and reading this:

The word "pulmonary" means “lung” and the word "fibrosis" means scar tissue – similar to scars that you may have on your skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis (PF) means scarring in the lungs. But, pulmonary fibrosis is more serious than just having a scar in your lung. In PF, the scar tissue builds up in the walls of the air sacs of the lungs, and eventually the scar tissue makes it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking and exercising.

Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike (see “Causes and Symptoms” below). The PF family of lung diseases falls into an even larger group of diseases called the “interstitial lung diseases.” Some interstitial lung diseases don't include scar tissue. When an interstitial lung disease includes scar tissue in the lung, we call it pulmonary fibrosis.

The most common symptoms of PF are cough and shortness of breath. Symptoms may be mild or even absent early in the disease process. As the lungs develop more scar tissue, symptoms worsen. Shortness of breath initially occurs with exercise, but as the disease progresses patients may become breathless while taking part in everyday activities, such as showering, getting dressed, speaking on the phone, or even eating.

Due to a lack of oxygen in the blood, some people with idiopathic pulmonary fibrosis may also have “clubbing” of the fingertips. Clubbing is a thickening of the flesh under the fingernails, causing the nails to curve downward. It is not specific to IPF and occurs in other diseases of the lungs, heart, and liver, and can also be present at birth.

Other common symptoms of pulmonary fibrosis include:

• Chronic dry, hacking cough
• Fatigue and weakness
• Discomfort in the chest
• Loss of appetite
• Unexplained weight loss

The Pulmonary Fibrosis Foundation is here to help you understand what it means to have pulmonary fibrosis. You can always reach us through our Patient Communication Center at 844.Talk.PFF or by email at pcc@pulmonaryfibrosis.org.

~~~~For my Baby, On Valentine's Day~~~~

"FIELDS OF GOLD"

You'll remember me when the west wind moves
Upon the fields of barley
You'll forget the sun in his jealous sky
As we walk in fields of gold

So she took her love
For to gaze awhile
Upon the fields of barley
In his arms she fell as her hair came down
Among the fields of gold

Will you stay with me, will you be my love
Among the fields of barley
We'll forget the sun in his jealous sky
As we lie in fields of gold

See the west wind move like a lover so
Upon the fields of barley
Feel her body rise when you kiss her mouth
Among the fields of gold
I never made promises lightly
And there have been some that I've broken
But I swear in the days still left
We'll walk in fields of gold
We'll walk in fields of gold

Many years have passed since those summer days
Among the fields of barley
See the children run as the sun goes down
Among the fields of gold
You'll remember me when the west wind moves
Upon the fields of barley
You can tell the sun in his jealous sky
When we walked in fields of gold
When we walked in fields of gold
When we walked in fields of gold

Check Your Status~ Single? Married? Or, It's Complicated Grief?

If your like me and not sure which status to check, I found an interesting article that may add some helpful insight. ~Breathing

http://www.mayoclinic.org/diseases-conditions/complicated-grief/basics/definition/con-20032765

It's The Simple Things That Are Important~ Written By: Christy Mccullough

Five years....five years that my life was changed forever. The day I was told and crying coming out of that office and not even knowing what exactly it was I had but knew I would have to have a lung biopsy. How could this be happening to me? What would my life be like? So many things running through my head and not knowing where to turn. I didn't even know what Interstitial Lung Disease was and what life was going to become. It took me until after the New Year to even realize what was happening and longer to tell family how bad it was. 

I went through stages of denial, grief, anger. The thought of never seeing my children graduate, not being there to help my daughter pick a wedding gown, never seeing my grandchildren. Why was this happening to me? I thought my life was over. My children, family, and friends would watch me die slowly and there was nothing I could do. But I was wrong. I was not raised to give up and I have been through many things that I came out of and I would keep fighting not for me, but for my kids. To know that mama doesn't give up and show them you keep fighting no matter what. 

Days are not always easy. I gained weight from meds and lost my self confidence of not just as a person but as also being a woman. I can no longer breathe as easy and do things like I could. I don't like asking for help, never have. And hate when I can no longer do things as I could before without having to stop cause I can't breathe. I would never be the same person as I once was. 

I found support though with family and friends and also support groups in which those people have now become like family.  I can't say that it's not hard as it was but I have come to terms that one day my time will come. We all leave this world one day but somehow it's different when you know that you only have so long and there's nothing you can do about it. The one thing you do know is that you live. Live everyday. It's funny that at times I forget that I'm sick and have a moment like why am I coughing so much and remember~ oh yeah "lol"! Five years of coughing so hard you break your ribs, Five years of changing how you do things, five years to learn that it's the simple things that are important. 

So many people take for granted the little things, little things as just being able to breathe. Be grateful for the little things and never take life for granted. I have made the five year mark and plan on fighting till the end. I thank God for giving me the chance to wake up and try again everyday. I thank God for the family and friends who love me and give me the strength I need at times and a husband who has done more than support me in every way everyday.

**Thank You, Christy for allowing me to share your thoughts and to help lend hope for those diagnosed with Pulmonary Fibrosis to know that it is a learning process and perhaps, somewhere within that process is a deeper understanding of the things that are truly valuable in our lives.**  

~~~Breathing~~~

So Beautiful~ Written By: Cathy Lewis

So so beautiful, the Poem~ 

I too have IPF, 

In the Hospital since march 2014, 

Diagnose 2012,

Always unaware, 

Always losing the battle, 

To continue in my effortlessly wandering journeys, 

That's what this disease do, 

It takes away the will the breathe,

To take another step effortlessly,  

On a ventilator creating 

And remembering,

As I always do,

No longer in the wind of nature's bliss,

But, now on the ventilator holding on to the blessings, 

and God's will.

~Cathy Lewis

*********From time to time, I am lucky enough to receive mail from readers. I read Cathy's comment, in regard to another poem written on the blog and felt that her comment, actually read as a poem. Eloquent and So Beautiful was her comment that I asked if I could use it on my blog. Cathy, Thank You for allowing me to publish your note and know that we all keep you in our thoughts and hearts. ~With Love, ~Breathing

My wedding ring is on my right hand~

It has been a little over two years since my husband passed from Pulmonary Fibrosis.  There are moments that I still feel like he's coming right home and that I will see him again.  I haven't been in denial that he is gone, I don't think so anyway.  It just seems to me that acceptance comes in gradual stages.  As a matter of fact, one thing I did not realize is that while he was sick with this insidious disease, I was already in a grieving stage.  It was called anticipatory grief.  It was a feeling of great loss, even though he was still with me.  

When he passed, my mind did struggle to come to grips with never seeing him again.  My mind and heart still struggles with this.  Deep down I felt, and still do, that our love supersedes his death and that somehow our relationship continues.  I really do believe that we still have a connection and it isn't just me carrying on his memory, but it is active on both our parts because I feel him in big moments and in small.  He has been a part of my daily life, even if that meant I had to grow and become more independent.  In his death I still felt his support of me.  So, in my heart I consider myself still married to him.  

I remember the first year after he passed I had to fill out some documents and there was a box that needed to be checked.  Single/ Married/ Widowed, and I went to immediately check the married box.  But, in the eyes of this document, I was no longer considered married and my hand was forced to check Widowed. This caused me a moment of resentment, not toward my husband, but toward society.  Just because my husband is dead, why do I have to check any other box other than 'married'?  After all, I was still married in my heart.  

Being a part of grief support groups, I had read several discussions about what the widowed do with their wedding rings.  There were many creative ideas such as melting them down into another piece of jewelry, moving the ring from the left hand to the right (which I hadn't realized, symbolizes a widowed status), or putting them away to one day hand down to the children.  Each choice is a very personal choice and there is not one correct way to handle this.  I read this, the whole time, rubbing the rings on my wedding finger and thought with great conviction that mine would never leave my finger.  

In public areas, such as the gym or the shopping center, there are moments inside I think of the fact I am a widow.  I long for just a bit of acknowledgement of this.  For someone to notice, hey~ I am damaged.  My heart hurts.  Or that I am spending my birthday alone.  Or that I do not feel the warmth of a hug very often.  I think these things, while absentmindedly rubbing my wedding ring.  Then, strangly, I wonder why no body notices this about me.  

As a country, if there has been a great loss, we fly our flags at half mast.  In days of old, it was common place to wear black and withdraw from social events for over a year.  According to Wikipedia many other cultures observe mourning as well.  The Japanese term for mourning dress is mofuku (喪服) and it is primarily black, while in India members of the mourning family and the people who come to participate in mourning all wear white clothes.  In Victorian times, mourners even wore a special ring in memory of someone who has died. It often bears the name and date of death of the person, and possibly an image of them, or a motto. 

As I thought deeper about these traditions, I realized that it is not just society's responsibility to notice I am in mourning, when at a glance they could never know this about me.  Maybe I was not ready for anyone to notice.  In this stage of my grief, I have realized that I want others to know this about me, even if it is unspoken.  Losing my spouse is also a part of my personal experience as a person.  For this reason, I have chosen to switch my wedding ring to my right hand. Not because I have moved on from the love I have with my husband, but because I have moved on from the idea that somehow people will know I am a widow just by looking at my face.  I have also accepted that I do want others to know this about me and to wonder if I am getting enough hugs.  ~Because, hugs are great and I could use all the support I can get.  xoxoxo

I'm not here to answer your call right now~

After my husband passed away from Pulmonary Fibrosis, I could not bear to cancel his cell phone line.  Talking on the phone was so much of our relationship, kind of like our life-line.  He worked out on the road and while he was away, we called each other with every new day to wish each other a good morning.  We called one another every night to bid a good night.  We called each other in the middle of the day to talk about whatever we were dealing with at the time.  It was a way to find out if we were safe and not a day went by that we did not speak.  

So, when he passed away, my youngest child and I decided to leave his phone line alive.  It helped us both a great deal.  My son would often call his phone while having a hard day at school.  Meanwhile, I would call my husband's line to wish him a good night or to tell him my car had broken down and I just needed to talk. We called his line every birthday, wedding anniversary and Christmas.  On New Year's Eve, my son and I would dial into my husband's voice mail and put the phone on speaker and listen all the messages we had left.  They were mostly tearful whispers and inaudible crying, but we could still make out the words we were trying to say.  

I finally discussed with my son that we should think about cancelling his line.  My son agreed.  After all, deep down we knew that most of the time we talked to my hubby, it is through our hearts and not on a ten dollar a month phone line.  We recorded my husbands voice mail message on another device and then I took the big step to call my phone provider and let them know.  

The customer service provider apologized for our loss and  indicated that we would not have to pay a cancellation fee for that line if the person was deceased and asked the date of my husband's death.  
"December 15th", I responded.
"Okay"  she said, "December 15th of 2013."  
"No, it was actually December 15th, 2011."   Realizing that two full years had gone by.  

I began to explain why we kept the phone line alive and that I had not been ready to cancel it until now.  She said that it was perfectly understandable and that she too, had dealt with the loss of her father and still wishes she could hear his voice.  She cancelled the phone line with no issue and we ended up sending tearful wishes and blessings to each other.  She was very kind.

I still have my husband listed on my speed dial.  I can't imagine anyone else's name listed there.  

We Are Only Human by Adrian Glyn Rosser

 "I think the one thing that we all forget is we are only human and we get used to rushing about doing this that and the other and we cope with this daily x then some little disease comes along like IPF and bang we have to stop and evaluate our lives x nobody explains that you might not be able to do the garden anymore or it takes twice as long to do the simple things like getting dressed going to the toilet and shopping x so if I can offer any advice to all the new ones who have just had this diagnosed don't be too hard on yourselves you still have a brain a heart and feelings it's just the Lamborghini engine has been replaced with a moped x"

~  Adrian Glyn Rosser

**Thank You, Adrian, for sharing.  It is true that it is so diffucult for the brain to follow what is going on with the body.  Be patient, gentle and caring with yourself.  ~Breathing

Get Over "It"

Soon it will be coming up on the two-year anniversary that my husband passed away.  Recently, a person told me that I should 'Get Over It' and to move on with my life.  The person also indicated that, we all lose people and I should not allow memories to control my actions.  

As a widow, I have heard that this type of thing happens.  Friends or family indicating their opinions of how long grief should last.  It had not happened to me directly within the last two years and I considered myself lucky.  But now, there it was, somebody said it.  How did I respond to that person?  I didn't respond to them at all.  After all, when I look into the mirror, I see my own eyes everyday and I know myself better than anyone else could.  

How did I feel about what was said?  Well, that part was what surprised me.  I actually felt a twinge of anger throughout the day.  What should "moving on" look like?  Is there a standard of moving on that I am unaware of?  I thought of all the things that I did after my husband's funeral.  
I continued to work full time.  I made improvements to the much ignored house.  I made friends.  I gave my children things to smile about and to continue to work towards.  I strengthened my relationship with my children and let them know that everything will be okay, that I am still here for them.  We went on family trips, to the ocean, to the mountains.  I continued to be creative and did things with my hands that make me happy.  I write and maintain a blog to help raise awareness for Pulmonary Fibrosis.  I realized that I need to care for myself and started to exercise and eat a bit better.  I contemplate what direction my life will go and explore the things that interest me.  I planted a garden.  I read books.  I swam in the river.  I hugged, smiled, and laughed.  Yes, I still keep my loved one's memory alive.  Hmmmm.... not bad for less than two years of losing a spouse, in my opinion.  What was making me angry?  Perhaps the feeling that I needed to defend and itemize my accomplishments toward growth.  Sorry, if it seems like I am not advancing fast enough for you.

I am not one who enjoys feeling anger, I reached out to a friend to see what her standpoint was.  As a matter of fact, she is Annie, my co-host on Breathing's Face Book page.  She, too, lost a loved one to Pulmonary Fibrosis.  She also experienced similar input from a friend, to just Get Over 'It.'  Annie indicated that 'it' is her lovely mother.  'It' is my beloved husband.  'It' was a father, a brother, a son, a friend.  'It' is not an it, It is a person.  A person that we care for and love.  She is right.  

As for not allowing memories to control my actions, that is true if the actions are negative and destructive. What if the actions are of kindness or advocacy?  If we do not allow our memories to shape us or control our actions how is it that we ever learn and grow?  I am glad I am not the person I was at 14.  I am glad I am not the person I was at 24 or 34.  This is because I experienced things that allowed me to reflect, learn and grow.  It is my belief that certain things happen to all of us that cause a struggle or a look within.  This is what life is!  There is a beauty in life because of these experiences.  Love, grief, happiness, mistakes, and success do become part of our memories for a purpose.  So that we can evolve in our thinking.  These are our own personal life's experiences that began from the moment we were born and shape us into the unique beings that we are.  To turn my back on the life's events that shape me would be turning my back on myself.  

   

Care Giving For Yourself

It was in October that my husband was diagnosed with Pulmonary Fibrosis.  Looking back at the span of his diseases progression, I realize that at that initial point the impact of the disease was primarily emotional.  Physically, the only way he was diminished was by a slight cough which sounded like he was clearing his throat.  In all other ways, physically he seemed fine.  By December the following year he had passed away from this disease.  He remained active up until the two months prior to his passing, at which point fatigue seemed to overcome him and he became weaker and weaker.  

In the October of his diagnosis, I was physically fine, too.  We both were just two normal people.  Very active and seemed to have a beautiful life ahead of us.  I was his caretaker, confidant and friend.  The initial point of his being diagnosed, it was primarily emotional for me as well.  As he progressed in his illness, I progressed in my level of care for him.  Taking care of my beautiful husband has been the most profound and rewarding experience that I have ever had.  It has also been the most difficult.

Have you heard that over long periods of time spouses start to look like one another?  Or perhaps, an owner of a dog will start to take on a resemblance of their dog?  I think it is because we grow close to the souls we love.  We empathize.  If they are happy we are happy, and if they are hurt, we are hurt.  

When someone we love feels ill, we feel ill too.  If they cannot catch their breath, we feel light headed.  If they are scared of what the future holds, we are scared.  But, here is the catch....   If we are a caregiver to that person, then in that moment, we cannot just collapse, we have to swallow it down and get it together.  After all, logically, we are not the ones that are sick, right?  Furthermore, the person that you would normally run to when you are not well, cannot deal with or accept what you may be going through.  As a caretaker, it is a scary place to be to know that there is no longer anyone left to run to.

There are moments in care giving, that when the patients back is turned that tears begin to stroll down your face.  Or, when you are sitting with them and telling them words of love, that your heart feels gripped with fear and dread.  When your partner is sleeping and you listen to the rise and fall of their breath and you lay awake, sick inside.  

When a loved one passes away, people tell you that their suffering is over.  But, you are still here.  Is your suffering over?  

When you advocate for the disease, you meet others who have the illness your spouse or loved one had.  The disease that you witnessed first hand.  The patients will tell you that because you are just a caretaker that you could never understand the frustrations of having the disease first-hand.  But, you do not say anything because you do understand.  You also understand what it is also like to see it through to the full progression.  Past the point that many patients are aware of.  You swallow this down.  Meanwhile, your husband or loved one is gone.  

As I mentioned, it was in December, almost two years ago my husband passed away.  It gets cold in the winter here.  During that time, I spent most of my time in a blanket.  My primary source of socialization, sitting at my computer.  Dark circles under the eyes, but, always putting happy-faced icons at the end of my sentences.  Everyday, a struggle just to get through.  Time passed, not in sections, but by minute.  If I could just get through the next minute, and the next...  Then, something needs tending.  I tend to it.  I feel glad I did and wait for the next minute.  Then another something needs my attention, and it goes round and round.  Until, slowly I notice what needs attention before hand.  Somewhere along the line, counting time by minutes, turned into measured days and I realized that it was time to turn my attention to me.  

Eventually, I started to see the sunlight.  I almost felt guilty about that.  At first it hurt my eyes, but then it felt good on my skin.   I began to feel proud that I had made it through and continued to take care of what needed tending.  I am surviving.  I am to the point that I have realized that this is not enough.  I have realized that I am not the one who died.  I am still alive.  I still have a purpose in my life and I want to do more than just survive.  I have also realized that Pulmonary Fibrosis has made me sick.  I had forgotten myself, physically and emotionally.  As my husband became more ill, so did I.  As he began to let go of life, so did I.  When he died, I did not.

I have to Give Care to myself now.

The Boat and The Stick

I mentioned that I was going on a little summer trip.  One of the things running through my mind was whether I should bring a teeny bit of my husband's ashes to our destination.  He used to love the area and it was a place we visited on our honeymoon.  Years before my husband was diagnosed and passed away from Pulmonary Fibrosis, we were discussing things like burial vs. cremation and our desires as far as that is concerned.  He always told me that he wanted to be cremated and since he enjoyed traveling our country very much, he also indicated all of the states he wanted his ashes spread.  I told him that was a bit inconvenient as they included practically all of the lower 48.  I remember telling him, that it's not like I would want to go on a cross-country trip after losing him and I found his wishes to be somewhat unreasonable.  He just laughed and told me to stand on a bridge and sprinkle him on a big-rig truck passing below, if that made it easier for me.  I would have never, in my right mind, think that it would be such a short time in the future that the idea of this would my reality. 

My son and I did bring a little of my hubby with us on our journey.  Sounds strange to say, but it was a couple of tablespoons.  We knew just where, if we were to do so, that we would sprinkle him.  The thing holding us back was the idea of letting him go~ even if it was just a little part of him.  The consolation I kept in my mind was that the real spirit of my husband did not lay in those ashes, but was alive and constantly with us in everything we did.  I knew my husband would have liked this.  In the same area I looked for a sign of his approval.  Within moments, I saw it.  Two pieces of driftwood.  One, in the shape of a boat and the second a very beautiful stick.  My son had been searching high and low for the perfect stick.  With the stick he drew into the sand the letters of my husband's name surrounded by a heart.  It took him more than an hour to do this as he made each letter big enough to see from the stars. 

Between A Rock and A Hard Place -Dan Mathis

As a person who has Pulmonary Fibrosis and is an advocate for spreading awareness of the disease, Dan Mathis shares his frustration of its impact upon his quality-of-life as well as the type of  care received from the medical community...

I hate Pulmonary Fibrosis.  Have I told y’all that?  The doctors will not operate on my hips because of the Pulmonary Fibrosis.  The pain doctor will not treat my pain with the medications it will take to help –because of the Pulmonary Fibrosis.  He says he is afraid of me because I have Pulmonary Fibrosis.  What is a person to do?  What?  Go to the ‘street drugs’ to get relief?  What?  Go ahead and go into hospice in order to get help?  What?  What?  What???  ~Dan Mathis

Dan's concern is not an isolated incident.  There are many folks who do not qualify for a double-lung transplant in order to save their lives.  Whether due to their age, other ailments, financial or logistical concerns; or all of the above.  Some, such as my hubby, decide that they would prefer to try to manage their disease and live out the remainder of their lives with the quality that they have become accustomed to.  I remember when my husband decided not to get a double-lung transplant; the patient advocacy group that was assisting us essentially explained to us that if he was not going to pursue the only viable option for survival, they would recommend hospice.  It was the right thing for them to do, although explaining this to my husband was quite difficult. 

There are so many emotions that come from the decision making process of going into hospice.  Essentially it is coming to terms that the medical community does not believe you will get better or live for more than six months.  On the other hand, one will receive all the medications it takes to be comfortable, as that is the primary goal -making the patient comfortable and meeting their current needs.  When I discussed this with my hubby, I remember telling him that just because he goes on hospice does not mean there is a time limit on his life, although it would allow him whatever he needs in order to have a good quality of life while he is with us.  Such a heart wrenching thing to think about.  Thank You, Dan, for allowing me to share this.

Happy Father's Day

 

Hi Honey.  Happy Father's Day.  We miss you.  You were a wonderful father and wanted more than anything to teach your children about honesty, hard work, humor, love and integrity.  I know it must make you proud to see all of your children and know that they did, indeed, listen.  It really did soak in.  I am still working on your favorite; getting them to put things back where they belong.    I love you, Babe, and I know you are still watching over us.

A Song in My Heart

Peg shares with us how having Pulmonary Fibrosis affect even life’s smallest joys with her unique humor and honesty.  She writes...

Ok, call me crazy... (not that fast, Bubba!) but, I was driving home tonight with the radio cranked and I was able to do something I haven't been able to do in a long, long time.  I sang along to the song on the radio - the whole song - and was still breathing.  Of course I still can't sing worth a hoot, but, I had the breath to do it.  That excited me no end!  I even danced a little jig in my seat. Those who have Pulmonary Fibrosis will certainly understand my excitement and those who do not, be grateful~ you don't have to know what it feels like not to be able to sing. Will it last? Who knows? But today I did it and it makes my overgrown, damaged heart happy. ~Peg Baer Hassett~

 How often do we choose to turn to music as a reflection of our emotions?  I know for myself, that there have been times I would be in my perfect sound studio -the shower, belting out Linda Ronstadt and thinking I sound just marvelous!  There have been times that when missing my hubby, I would play our songs and sing along and cry.  In happier moments, I would just hum to myself mindlessly going about the day.  It would be so hard to imagine not being able to sing a song.  ~Breathing~

“One good thing about music, when it hits you, you feel no pain.” ~Bob Marley~

Rain Song

There is a song that I love and in it the lyrics say, "I've felt the coldness of my Winter".  I have sang that many times and thought I knew what the words meant.  At this moment, in my part of the world it is Springtime.  Many areas are still dealing with a late Winter, causing people to wonder when the beauty of Spring will come and the Sun will shine upon their faces and bodies.

I want to share something with you. For the last while, I have been secretly wishing Spring away.  I have been content in my Winter.  With the dark hours and safety of my dwelling, I am in my little cocoon.  Safe.  When the rays of sunshine began to peak out and the days grew longer, my heart was filled with anxiety.  I looked outside my window...

I thought about how my husband was a 'Boy of Summer'.  His tan skin and sparkling eyes, like water.  He enjoyed every moment in the sunshine.  I used to be the same as he.  We both would awake in the early morning hours and work in our yard.  Silent, yet somehow dancing to our own music.  We, together, were ambitious in seizing the day.  Working hard to preserve our simple home and encouraging the flowers to bloom.  As the days grew warmer, we ended our daily dance by jumping in the river.  Soothing and sweet the water rushing through us.  Then, we lazily ended our day blissfully lying around, looking at the birds and the sky.  Talking about this and that.

As I looked outside my window, maybe I saw him in everything Spring.  Maybe I was scared that somehow, I must step outside and find the gumption to work on all the unfinished projects that were left behind.  Maybe, I was scared of what others would see of me.  Could they see how alone and afraid I felt?  I couldn't have that.  It overwhelmed me.  I walked away from the window and wished Spring away.  I want to snuggle back into my quilt and stay there. 

Days grew warmer and I stayed in my quilt.  It is a conscious decision.  I know, because I contemplated the repercussions of withdrawing from the world.  It would surely take it's toll on my body and health.  My spirit and creativity.  But, I didn't know how to start. 

In a moment of giving up or maybe it was reaching out, I grabbed the phone book and called a landscaper.  I know it doesn't sound very profound.  But, it took a lot to just do that.  In some ways, I had to admit to myself that I could not do it all.  The gentleman came out and I showed him all of the unfinished projects around the house.  He wrote me a bid.  "Excuse Me?"  I thought when I saw the price.  I let him know I would sleep on it.  That night, I held the bid in my hands and mentally asked for guidance from my husband.  I didn't receive an answer, but knew if he had been here, he would say, "What are you doing?  You know I can do all that!"  ~But You are not here.  As I looked at everything listed, I chose the top two priorities and the next day, called the landscaper back to schedule the work. 

In the meantime, I put on my gardening shoes.  Found my old gloves and stepped outside to work on the other items that I could not afford.  I felt the Sun on my face and my hands in the dirt.  I worked and worked and the kids joined me.  I worked until my bones ached.  But, it felt good.  I continued to add to my list and today I feel the glory of the day.  I see the birds flying and beautiful sky.  I feel closer to my husband.  Each day, I wake up and can't wait to meander around the yard.  I feel a lightness in my heart.  It feels like living. 

Sometimes, it is true that it takes just one, little, tiny action to get the ball rolling.  It gains momentum and the 'Coldness of my Winter' has passed ~At least for this day, and today is all that matters.

I Just Called to Say I Love You

Our family recently got through the one-year anniversary of my husband's passing.  On the day, my son and I wrote little notes to him and then burned them.  We blew the ashes out into the wind.  It was our way of sending him the thoughts in our hearts.  Later, we were talking about other ways that we still talk to my hubby.  My son told me he calls his cell phone and leaves messages on his voicemail. 

After my hubby passed away, I could not bring myself to cancel his cell phone service.  So, I pay for his line every month.  I had already played his voicemail greeting and recorded it on a hand-held recorder, just so I could have the sound of his voice stored, but still, I want to be able to call him.  So, his cell phone account is still active. 

While discussing this with my child, he told me he calls his line often and on particularly difficult days, he may call more than once.  Then, he told me that he even texts him.  I asked how often he texts his step-dad and he says about once a day. 

To which I responded, "There's just a slight problem with that, your Dad doesn't have texting on that line.  No wonder my phone bill has been so high... :)"

The Big Hill

I'm a list maker.  I always have been.  I save all my tablets of lists from over the years so that my grandchildren could read about all the mundane things a person did, back in the old days.  When my family was young, I made lists for shopping, homework and chores.  When my hubby had his trucking company, I made lists of repairs and maintenance, lists for taxes.  I think my hubby liked this in me.  I made the lists so he didn't have to.  If there was something he was forgetting, he could always look at my list - or the 'honey do' list that I made for him :)

When my hubby was diagnosed with Pulmonary Fibrosis, my list making really went into action.  This is where my expertise kicked into gear.  I made lists for medication, bathing, food, topics to bring up to the doctor.  Lot's of stuff to list!  When my hubby was on hospice, I made more lists having to do with the end of his life.  Some where things I knew that I would need to do, other lists I took dictation from him.  Call so-and-so.  This is what I want for you and the children, ect...

I started doing this a long time ago, because I had trouble sleeping.  I would toss and turn and think of the things that I thought needed to be done.  I realized that writing things down eased these feelings and would help me sleep better.  I also felt that it was my way of taking care of others.  To know what was expected of me and what needed to be done.

After my hubby passed away, I made a list of 5 small things that were actually huge.  They were some of the biggest things, I knew in my heart I needed to do.  Some of the items had to do with finances, others had to do with the children, another healing.  This list, for once, I didn't write down.  It stayed in my head and I tossed and turned many-a-night.  These were such large things to me, that one could simply give up due to the overwhelming feeling and sometimes I really wanted to.  The things on the list were also connected to my life with my darling husband.  A way to make him proud of me, if that is possible.  So, I couldn't walk away from this list.

Today, I completed that list.  I should feel proud and in some ways I do.  I actually think the list has got me through this last year.  It gave me a reason to go on.  Now, I have finished it.  I climbed a big hill and now am sitting on top of it, feeling not proud, but sad.  I never thought of what I would do after climbing the big hill.  I guess I will sit here and ponder it for a while.