Carnations smell like a funeral home. I don't like flowers much, but I know by bringing them, it makes her feel good. Her lips were dry and crusted. To keep her jaw shut was no longer worth the exertion. She told me she no longer slept at night. When no one was there to nurse her, she felt so lonely. Her cough was a struggle. Wet, crackily, and drowning all the way to her last twilight breath. The sound she couldn't escape, filling her eardrums, crashing like waves upon rocky shores.. even in her dreams.
She held my hand and said to me "it's the scariest place...being here......the loneliness. It makes my heart hurt. I don't want to go" her eyes swelled, as a few tears rolled down her porcelin cheeks. She looked so pretty.
When it was time for me to go, I looked over my shoulder that last time. My grandma guided me towards the door, as the little girl died. She yearned to be free. Free of that bed. Free of that hospital. Free of being sick. A child again.
She looked so... so old.
A few days later, on the eve of her 16th birthday, Tracy lost her fight with cystic fibrosis.
She and I squeeze into a recliner and watch television until the ball falls. Arguing things..Like where we could go if we had wings. Who is the fastest when the recess bell rings. Was it true that horses climb trees?
She was so worked up with the lack of CF awareness. Her idea was to write a petition to be hand delivered to the doorstep of congress advoccating change as loud as she could, with all of her breath. Sadly her lungs weren't quite strong enough, but damn her heart, and fight composed the meanest, most intimidating 4 foot nothing 15yr old this planet has ever seen! Margret RN, helped Tracy write it. It was imperrative that everyone who was dealt this deadly disease is not alone. Imperrative that state represenatives in congress, and the general public, be aware of the importance of KNOWING. It angered ger soo much that not enough was being done! Why were so many suffering in dark. Where was the compassion? Where was the understanding? Why did it have to be her.....That letter with all the signatures were lost after her death.
New Years, when the ball drops, we bang, and clammor pots and pans up and down the block. Bringing the neighborhood alive in the this very infancy of the new year. Each breath cloaking the midnight air. Memories of Tracy.
Over the years, there were others too. The boy who couldn't leave his room when there were arts and crafts on the other wing. The boy who could not catch his breath while running the cones shaped as a diamond path. I never got it back then. I didn't fully understand.
There was this TV movie I remember watching back then. It was about this little girl that had CF and when she was 8 she coughed blood. That image burned into my head.
I'm 28. It's time to wake up. My alarm was ripping my slumber from limb to limb. This morning felt different. I was just informed that my name was given to not just one, but two childhood friends first sons'. Talk about pressure! Pressure to make it the name they could feel proud of.
I was diagnosed with CF when I was at birth. My mother was a single mom, in school at OSU. She had me in a difficult time of her life. She and I lived under my grandparents roof. I loved it! She on the other hand felt what you'd expect; living with her mom and dad at age 20 with a son was hard. Hard not having anything to call her own. Hard to be a mom, when she had school and low paying job. Managing doctor visits by way of public transportation in temperatures of 30 and below. I remember watching her cry. I didn't understand. She cried because she felt like she was failing at being a mom. That it was too hard to raise a child with a chronic disease all alone. But she always managed to gather composure, and carry on.
Mom always wanted to give me the whole world, but her pocket book couldn't do it. It hurt her that she wanted so badly things for me. And she did everything in her power to give. I know now the stretches she would cross for me. She loves me. I am her son, and I love her too.
"mom, how much do you love me?" i say
"I love you infinity and beyonddd!" she says
"well, I love you more"i say
"you do? how so?"she says
"I love you all day.."i say
Now is not the time for her to worry about me. It's come a time, that time was yesterday, that now in order to "get" what I want, I have to be willing to go get it. Willing to make the sacrafices. willing to make changes. To really want it.
TO BE CONTINUED SOON......
She held my hand and said to me "it's the scariest place...being here......the loneliness. It makes my heart hurt. I don't want to go" her eyes swelled, as a few tears rolled down her porcelin cheeks. She looked so pretty.
When it was time for me to go, I looked over my shoulder that last time. My grandma guided me towards the door, as the little girl died. She yearned to be free. Free of that bed. Free of that hospital. Free of being sick. A child again.
She looked so... so old.
A few days later, on the eve of her 16th birthday, Tracy lost her fight with cystic fibrosis.
She and I squeeze into a recliner and watch television until the ball falls. Arguing things..Like where we could go if we had wings. Who is the fastest when the recess bell rings. Was it true that horses climb trees?
She was so worked up with the lack of CF awareness. Her idea was to write a petition to be hand delivered to the doorstep of congress advoccating change as loud as she could, with all of her breath. Sadly her lungs weren't quite strong enough, but damn her heart, and fight composed the meanest, most intimidating 4 foot nothing 15yr old this planet has ever seen! Margret RN, helped Tracy write it. It was imperrative that everyone who was dealt this deadly disease is not alone. Imperrative that state represenatives in congress, and the general public, be aware of the importance of KNOWING. It angered ger soo much that not enough was being done! Why were so many suffering in dark. Where was the compassion? Where was the understanding? Why did it have to be her.....That letter with all the signatures were lost after her death.
New Years, when the ball drops, we bang, and clammor pots and pans up and down the block. Bringing the neighborhood alive in the this very infancy of the new year. Each breath cloaking the midnight air. Memories of Tracy.
Over the years, there were others too. The boy who couldn't leave his room when there were arts and crafts on the other wing. The boy who could not catch his breath while running the cones shaped as a diamond path. I never got it back then. I didn't fully understand.
There was this TV movie I remember watching back then. It was about this little girl that had CF and when she was 8 she coughed blood. That image burned into my head.
I'm 28. It's time to wake up. My alarm was ripping my slumber from limb to limb. This morning felt different. I was just informed that my name was given to not just one, but two childhood friends first sons'. Talk about pressure! Pressure to make it the name they could feel proud of.
I was diagnosed with CF when I was at birth. My mother was a single mom, in school at OSU. She had me in a difficult time of her life. She and I lived under my grandparents roof. I loved it! She on the other hand felt what you'd expect; living with her mom and dad at age 20 with a son was hard. Hard not having anything to call her own. Hard to be a mom, when she had school and low paying job. Managing doctor visits by way of public transportation in temperatures of 30 and below. I remember watching her cry. I didn't understand. She cried because she felt like she was failing at being a mom. That it was too hard to raise a child with a chronic disease all alone. But she always managed to gather composure, and carry on.
Mom always wanted to give me the whole world, but her pocket book couldn't do it. It hurt her that she wanted so badly things for me. And she did everything in her power to give. I know now the stretches she would cross for me. She loves me. I am her son, and I love her too.
"mom, how much do you love me?" i say
"I love you infinity and beyonddd!" she says
"well, I love you more"i say
"you do? how so?"she says
"I love you all day.."i say
Now is not the time for her to worry about me. It's come a time, that time was yesterday, that now in order to "get" what I want, I have to be willing to go get it. Willing to make the sacrafices. willing to make changes. To really want it.
TO BE CONTINUED SOON......
DATING
The three of us were having dinner at the Olive Garden when I was told that cystic fibrosis would be a burden. A heavy weight. That it would be unfair to them.
"you're better off just you."
That rings through. I know it's silly to
