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~

I Would Do It All Over Again ~A shared story of John and Susan~

Susan wrote her heart out after the recent passing of her husband John.  She has been kind enough to share their story with us~

My Husband was given 18 months to live back on February 14^th, 2007.  He was diagnosed with Pulmonary Fibrosis, Pulmonary Hypertension, Emphysema and later with an AAA and A Fractured T12.  Eighteen months came and went.  Then, we started our ride on the roller coaster from Hell.  I watched the Love of my life change from a strong, hard working man to a man who spent 24/7 in bed.  Only able to get up to go to the bathroom and who had to wear a catheter for three years. 

He would try not to let me know how bad it hurt.  He would think I was sleeping and he would scream and be crying.  He had an e-coli urinary track infection for over four years.  Over six years and three months later, we would ride the coaster over and over again.  He would always get so close to dying- over 10 times and every time he would bounce back.   

There were things he wanted to happen before he left this world.  He wanted to see our sons again.  They came at Easter.  He wanted to live long enough to see the adoption happen.  The adoption was final on April 11, 2013.  He wanted my Social Security and Disability Insurance to come through, so I would have an income. 

Hospice took the choice for him dying at home away from me.  He had to be taken to the hospital on  Thursday, May 2, 2013.  Everyone kept saying- They didn’t know John.  He could bounce back just like before.  I didn’t think so.  John stopped breathing three times on his way to the hospital.  The hospice nurse was in the ambulance with him and gave him his Roxanol and his Oxygen would go up.  I had that gut feeling that this was it.  Six years and three months, at this point, seemed like a mere few days...

Around 4:45 p.m., I got a phone call that my Social Security and Disability Insurance had been approved.  I told John and he started crying.  I told him everything he wanted to happen, had happened.  He was able to talk as they tried to make him comfortable.  I had told the nurses that if it looked like he was going to go to wake me up, and at 2:15 a.m., they woke me up. 

I was laying beside him and I leaned over and laid my head on him and hugged him.  His Oxygen shot up to 77 and his heart rate 100.  I had stopped his passing.  I cried and cried because that meant he had to suffer longer.  The nurses said that he had enough medicine in him to put two grown men on ventilators.  He finally settled down and I talked to him and told him ~It was time to let go and go to Heaven.

He kept trying to pick up our Chihuahua, Poco, who died on March 13, 2011, and our cat Gizmo, who died in 1999.  I had just put on one of his favorite songs, Amazing Grace (My Chains are Gone) and was telling him that he wasn’t alone.  I was right there with him.  He lifted his head and glanced at me. 

I said, “It’s okay, John Baby.  I love you so much Baby.  It is finished.  The battle is over.”

He held my hand as we laid there.  He pulled his arm away and laid it on his stomach.  I hit the nurses button and they came running.  But, My Baby was gone.  I walked over to the window to look out while they took care of him.  I didn’t want to see his face. 

The nurses left the room.  We were alone.  I got my stuff together and as I was leaving, I went to his head and laid my face on his ear and talked to him.  Told him Thank you for 25 wonderful years and that I loved him and would do it all over again.  I kissed his forehead.  I started to leave the room, when, I had a very strong urge to look at him.  So, I turned and looked at him.  As tears streamed down my face, I smiled.  John had the most peaceful look on his face that I have ever seen.  No look of pain or torment.  Just Peace.  I am so glad I looked back.  It is a memory I will not forget. 

~Susan Stevenson Lee~

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.