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.     

Keep On Keeping On! ~Written By: Denise Queen-Sackinger

On this day, 7 years ago I underwent an open lung biopsy because a pulmonologist assigned to me a month earlier while I was in the hospital with double pneumonia didn't like what he saw on my x-rays. And the rest, as they say, is history!

Like most diagnosed with this mess, I had been seeing my PC doc for over 2 years about a chronic cough. Like most, I had never heard of IPF. Like most, I was scared out of my mind when I got the results of the biopsy. But here I am, 7 years and still stable. I sleep with O2 and use it with exertion. I had to quit working 2-1/2 years ago due to the high stress job and the bone degeneration caused by Prednisone. But, I've beat the statistical odds and for that, I am grateful. My 1st grand daughter was 3 days old on this day 7 years ago. I was sure I would not see her walk, much less be the young gymnast she is. I went to her 7th birthday party this past Saturday and best of all, I have 3 more grand daughters; her baby sister and her 2 cousins. I am blessed.

It's not lost on me that September is the month I was diagnosed and it is PF Awareness month. The year after I found out about this disease there was a PF Awareness WEEK. We are making progress! I've met some great people on FB the past 7 years. I've made life-long friends; most I'll never meet. I've lost far too many. If you have the energy to be an active advocate for PF, I applaud you. If you are at a point where you can only tell one person, one PF fact, I applaud you. Love, peace and happiness.  

“Keep on Keeping On!"  Written By:  Denise Queen-Sackinger

**Thank You Denise, for allowing me to share your experience.  You're spirit is amazing and may you have many more blessings to come!  ~Breathing

5 Things Every Person Living with a rare disease understands ~Written By: Rachel Wilson

5 Things Every Person Living with a Rare Disease Understands

Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.

Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.

How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.

In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:

1. Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
2. Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
3. You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
4. Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
5. People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”

And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. Cushingstories.com co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”

Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.

For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.

via;  http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

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

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~~~

Can I get paid to be a family caregiver?

In my particular state, I was told in order to receive a wage to be my husband's full-time caregiver, we would have to do two things:  A) get a divorce B) live in separate homes. I really never thought that made much sense. Perhaps, your situation is different. The link below offers some good places to start if you find yourself caring for a loved one.

The Care Givers Space

http://thecaregiverspace.org/blog/paid-family-caregiver/

This site is wonderful for anyone who is a caregiver.  Great information and support, so please feel free to visit them.  

Idiopathic Pulmonary Fibrosis via; The Canadian Pulmonary Fibrosis Foundation

Everywhere

For the man who wandered
Beautiful lost soul  
So many places on the road
One of your words when we did part, was for me to move on
Put it to start
It was everywhere that you wanted to be
Most importantly, Inside of me 

On my roams
I have seen the mountains 
Seen the sky
Not a day comes that I don't ask why
Where you are needed to be 
So far away from me

I sprinkle the dust like stars in the night
Watch as your beautiful spirit takes flight
Beneath my feet
Earth's ebony 
Soft as a whisper
From my hands the powder blew
Sweet is the breeze
As my spirit flew.

~Breathing~


Dear Hubby, How am I doing?  I hope you think I am doing alright.  You said you wanted your ashes in some of the places we have roamed.  But, I thought it was more of a joke, because you and I have been to so many places.  I don't know how I would start to do that. I have tried in my own little way to fulfill your wishes.  So far, in the last two years, you are in: Cannon Beach OR, Donner CA, "Lovers Rock" NV, Wrights Beach CA, Santa Cruz CA, Snake River ID, City of Rocks ID~~~~~~~~~~~~~~~~

Since you have been gone~ 2 years, 4 months

It is Spring once more, Babe.  This year I have been much better about pulling my head out from the covers and enjoying going outside.  It still was a struggle to see that a new season has come upon us and you are not here, physically to share it with.  Sometimes, I think it was because you passed away in December, two-weeks before Christmas, and I tend to stay in that space too long.  -The space in which it is cold outside and the shortness of the day descends upon me like a shadowy cloak.  I feel invisible during that season.  The feeling is familiar and reassuring, but then, like a surprise, a new season gradually comes upon stretching sunlight into my world. Rather than hide reluctantly from it, as my previous tendency has been, I realize that it will still come and that time will move forward.   

Not a day goes by that I do not speak to you (as you know) and most of the time I hope you can hear me. The rest of the time, I am not so sure because you know I can be long winded and sometimes tend to ramble.  I think you might even know when I am going to do that before I do.  I see the signs you send me, especially all the birds, and I also feel the way you still support me and there are times I really do sense a larger, overall feeling of glowing love with the intensity that can only be from you.  I also think about the year-long period that you were sick.  The heart-breaking moments when you struggled and there was nothing I could do.  

I think about the moments that I used to step out onto the balcony and look at the stars and think that this could not be happening and I would wish with all my might that something might turn around the progression of Pulmonary Fibrosis within your body.  At that time, I also had a sense that what I was praying for was bigger than you and I, almost like I wanted to re-write the stars themselves.  

I stay involved with the Pulmonary Fibrosis community and I have to say, since you have been gone, there have been so many new names and each person has such an individual story that at times I wonder if our individual story has made any kind of a difference at all.  But then, I realize all of our stories, collectively, create's one large entity of its own.  Still, there is not a cure for the disease, although it seems as though there is more conversation regarding a variety of treatments as well as possible links as to why this disease occurs in some people.  I know you always wondered what caused it for you. 

 It even scared your best friend and co-worker enough that he, himself, went and had a CT scan while you were ill. He was afraid it was something environmental that he may have been exposed to as well.  He showed no signs of it.  Of course, he never told you that, but he let me know about the ways your illness affected him, shortly after your funeral.  Speaking of friends, I have to say that there are so many wonderful people who, unfortunately, have become familiar with Pulmonary Fibrosis, either by having it themselves, or through losing a family member to it.  I feel honored to know some of these people and am truly amazed at the support we feel for one another.  

Home is going well.  I planted 4 lilac bushes along our west fence-line and 10 more are due to arrive, soon. It was one of your favorite plants and I won't forget that one time we were sitting at our favorite hamburger shop and you were talking about the Lilac because there were a whole bunch outside.  You were saying how much you enjoyed the smell of them during spring and as you were talking, a really large gust of wind started up outside the window and the Lilacs started to lose petals from their bloom.  It looked like it was snowing Lilac.  That was right about when you wanted to discuss getting married at that exact hamburger shop!  That makes me giggle.  I still go there, but I am glad we found our own perfect spot for our wedding. 

 I think a lot about our wedding, too.  That was a perfect day ~always.  I see your face, the way it looked when I was walking down the aisle toward you.  I know the bride is supposed to be glowing, but you really had a light emulating from you and it made me want to run up the aisle to join you!  I had to pace myself.  I also remember how you got Strawberry Lace cake on the top of my wedding dress because you tried to shove the wedding cake into my face.  Not cool!

Speaking of Strawberries, I planted a whole strawberry patch!  All I could think about the whole time is how much you would have loved if I did that years ago.  We now have six, good sized rows.  I really do feel you guiding me.  It was amazing because about 3 weeks back I kept posting pictures of strawberry stuff on Breathing's Face Book page and that same week at my orthodontist appointment, the assistant and I started talking gardening and she mentioned that she is going to thin out her strawberry patch.  I said, "I'll take them!!!"  and Viola! We have baby strawberries!  

It has really been a Godsend.  Because of the strawberries, and the preparation thereof, I have been wearing my gardening hat at 8:am in the morning.  It feels good.  It feels good on the outside and on the inside.  To be out there, not caring what anyone thinks, and why should I?  I am doing what you and I loved doing together.  Boy, after losing you, I had the hardest time carrying on working in the yard because you and I spent most of our free time together doing it together.  We found it so beautiful and it almost hurt to do it without you.  The same goes for traveling.  Everywhere I went, I remembered everything we ever saw together.  And, we put on a lot of miles with each other.  When I do these things now, I feel it is when I am closest to you.  

Thank Goodness for Spring.  It literally has come to save me.  I love you so much!  ~And I will see you tomorrow in the garden.  

~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

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

Doodles From Grief Counseling

 I look at my spirit like a garden.  There have many days I have been cultivating my garden, and there have been times that the wind and storms have ripped it to shreds.  There have been times that I have ignored the weeds and there have been times I have been on my knees, picking each one out.  I have introduced new plants to my garden and I have learned which plants are not suited to grow there.  Loving and kind friends have suggested that I may be spending too much time on my garden alone.  I should enjoy sharing my garden with others.  

Just over a year and a half after my husband's passing from Pulmonary Fibrosis, I decided to go to a grief counseling group.  Although, I feel that my understanding of my husband's death has been fairly healthy and I can look back over the year and see the ways that I have grown as a person, I also know that it is good to push myself out of my comfort zone.  Often it is under these circumstances that I have grown the most.  

It was a very small group and ice-breakers were in order to get us acquainted.  A small envelope was handed to us and inside the envelope were many words cut into small squares.  We were told to pick one word that best described our last week.  I poured the words on the table before me and sifted through each one.  Words were spread out before me such as Anger, Isolation, Bitter, and Sad.  I searched, but could not find one nice word.  I did want to say something, maybe all my nice words fell out or was given to someone else in the group.  But, I do not like confrontation and I didn't feel like defending my standpoint, that while, Yes, I did feel some of those negative words last week, I also felt Love, Laughter, and moments of Joy. Perhaps in haste, I decided this was not where I needed to be.  It's one of those things when you just need to listen to your inner-voice. 

 I did stay the rest of the meeting and most of my time was spent with ears open, and hands on paper, doodling.  I still wanted the discussion to flow through me and to absorb what I could, when another exercise seemed quite fitting.  It was explained that grief is not just one big thing but a series of small things over a period of time.  For instance, yes, I miss my husband and learn to deal with that everyday- although why is it that when I have a problem with the plumbing, I unexpectedly break into tears and sadness for a whole day? It is because our loved ones are made up of many components and our love has many facets.  We not only miss that person, but a million tiny things that remind us of them and grief is mourning each and every one of those things individually.  

So, as I listened to this, I began to add to my doodle some of the ways I missed my husband and acknowledge that I will need to mourn these things as well....

Understanding

Love

Togetherness

Your Eyes

Holding Hands

Your Smell

Our Music

Making Love

Security

Dreams

Our Travels

Companionship

Your Hair

Annoying You

Arguments

Making Up

Talking

Laughing

Your Eyes

Partnership

Advice

Safety

Guidance

Your Coffee

Sharing

Parenting

Trust

Comfort

Our Plans

*What I miss most of all and really can't be replaced is 

Our Chemistry

Love, 

~Breathing~

What Are We Going To Do???

Bags packed. Full tank of gas, Pringles, Jerky, Water, we were all set. My youngest and I hit the road. "Summer road trips are the best." I thought to myself with just a twinge of butterflies in my tummy. Tiny bit nervous as this time it was just the child and me. I could do it, I knew I could. My husband and I traveled all across the country together and I learned so much from him. Besides, we were only going a day's drive.

The trip went smoothly and we were making good time. The one part I was dreading was heading over Donner Summit. I had many scary memories of my husband and I going through the summit in a big rig truck. While the scenery is beautiful, we usually crossed that area when it was icy with snow. The lanes are small and the mountains steep. I calmed myself with the comfort that it was summer and I was not in a big-rig truck. I was in a 1998 Toyota.

On the last leg of crossing the summit, we were headed down a deep grade, when my car suddenly lost all acceleration. I glanced at my son who was safely buckled into the passenger seat, and then double checked to make sure that somehow we had not knocked the gear into neutral, which wasn't the case. At least I had my brakes. Coming off the hill, I made the last minute decision to pull off at an exit, which had a small ramp that went uphill. We coasted up the ramp to a stop sign. I pulled my emergency brake and turned off the car. We were up in the mountains on a tiny exit that lead to who knows where, not a person in sight. Now what? I stepped out of the car and lifted the hood. Hmmmmm. "What was I looking for?" I wondered. I luckily had cell phone reception and called the family members that I was going to visit. They were going to be about 2 hours before they could come get us. What was I going to do with my car? Oh, why did this have to happen? What would my husband tell me to do? I closed my eyes and listened to the breeze blow through the pine trees. "Husband, I wish you were here. You never did train me for this experience." I opened my eyes and caught the eye of my son, still sitting in his seat, buckled in. I knew what I needed to do...

Taking a deep breath, I called him out of the car. "What are we going to do, Mom?" He worriedly asked. "What are we going to do? What are we going to do??" I dramatically responded. He shook his head yes. "We, my child, are gonna take some pictures! Grab that camera! Look at how beautiful it is here!" I exclaimed. So that is what we did. We had the whole little place to ourselves. It was lovely.