Life for me has been different. Growing up with Cystic Fibrosis was a constant battle for me. I had to find my place in life, where I fit in. It was a struggle that I dealt with for years. I wrote this blog tonight because I began to reflect on my childhood memories. I have wonderful memories. I had two loving parents, a wonderful home, and an amazing family. However there were things about my life that were different from my friends. I took a breathing machine for sleep overs, I missed school a lot due to frequent hospital visits and I was sick. I thought back to what made my life different, the same and even what made it better. This is one of those memories that made it different. I tried to reach back in time and really grasp what my mornings were like as a child. The sounds, tastes, and feelings. What it felt like for me, a child with Cystic Fibrosis. So this is what I came up with. This is from an actual memory that I have. I picked the age ten, because I am not really sure when this actual memory was. I do know that this was pretty much my morning routine every day so it would be really hard to narrow it down on a time line. I believe sometimes as we grow older, we forget the way things are seen through the eyes of a child. So I took a moment and stepped back into time, to remember. =)
The sun hasn't risen just yet. The bush against my window scrapes the glass as it always does. I roll over as my bedroom door eases open and the light from the hallway quickly descends into my room eating away at my slumber and telling me a new day has arrived. I hear my mother call quietly, "Summer, it is time to get up." I know what is next. I hate what is next, actually I despise it. I am ten years old at the time and all I want to do is sleep a little longer. Yet I know what is coming is the inevitable and I might as well not fight it. I lean up and let out a deep cough, the kind that has been sitting in my chest all night. My sides tear open and my whole body slumps down into a giant mass of bones and skin. I am still tired, oh so tired. My father walks into my room, being careful not to disturb me. He clicks on the lamp on the side table next to my bed. He folds the towel and then lays it across my chest. He cups his hand and positions it over my lungs. Then it begins. He starts to pound into my chest over and over. The dull thud vibrates all over my body. I ache, I ache to sleep, I ache to breathe, I ache to live, yet I do not want to do what is required of me. I began to pull away giving him little room to adjust his hand. He pulls me back and repositions again asking me to be still. Somewhere in the background my mother comes in with a fresh clean nebulizer with my morning cocktail of albuterol. The beating grows harder and louder. My father's hands are like rough leather and they pore down onto me as if he is trying to rip the disease from my body himself. The taste of honey and lemon lingers on my lips from the night before. The night of coughing, tossing, and turning, coughing up bits of blood that I will find dried up on my pillow in the morning. Yes, one of those nights. The noise in the room is silent, the sound of my hollow chest and the hum of my nebulizer feel up the air. I hear my sister who has awakened and is steadily getting ready for school, while no one takes the time to help her. Too much effort and attention is being spent in my bedroom to keep a sick child alive. My parents work steadily together, almost as a machine. You can hear their gears grinding. My mothers voice sounds weary and full of slumber still. My father barely speaks at all. The room is filled with a silent scream, trying to keep a sick child alive. My breathing is slow and steady as I am buried beneath my blankets. I am comfortable. I feel safe. I know the monster in my closet no where near compares to the one living inside of my chest, eating away at me, little by little. I flip carefully onto my side when my father instructs me to do so. Our situation has brought us to be comfortably numb. This is our life. This is our normal. I notice my sister walks by my room several times. She has her make up on and her hair placed in just the right way. She is so beautiful, like a princess. I want to be like her, I want to be a princess too. I clutch my stuffed rabbit as he pounds me harder. My sides, sore from the night before, are showing themselves to be absolutely wicked now. The aching will not seem to give me any relief. After another ten minutes, my father pulls the towel from my chest and tells me we are finished. As he leaves the room I set up in bed and a cough rumbles out of my chest like a mighty beast waiting to pounce on it's prey. A deep breath follows and it burns yet feels cool and comforting at the same time. My mother comes in and turns off my nebulizer. I swing my legs over the edge of the bed and start my favorite part of my day. Where I am finished with Cystic Fibrosis, at least for a little while and I can be normal like the rest of my friends. I quickly get dressed, scarf down an egg sandwich and grab my backpack. I know tomorrow morning this routine will start all over again, but for now, this moment, I am ten years old and I want to be a princess one day, just like my sister and that is all that matters.
Wednesday, January 27, 2010
Monday, January 25, 2010
An Introduction of Sorts.....
***First I want to really take a moment to spotlight something that I believe is going to be a huge movement in the CF community and sweep through like none other. A pretty awesome guy, a fellow Fibro =), Ronnie Sharpe and his fiance, Mandi, have started a new website just for CF patients and their family and friends. The website is called Cystic Life and has by far impressed me. The site is set up much like that of Facebook and is a FANTASTIC way of communicating with others who are living the same way. We are all warriors on this giant battlefield called life. It is an honor to be fighting next to people like this!!! So if you haven't already please take a moment to go check out the website. I will provide the link below. It is very easy to navigate. I truly believe that these are the things that are leading us to the cure!!! Cysticlife.org, where we can come together, unite and start our REVOLUTION!!! =) Thank you so much Ronnie and Mandi! =)***
Click on the logo to go to Cysticlife.org!!!
I wrote my first blog on Cysticlife.org tonight and thought I would share it here as well. I will not be doing this with all of my blogs however since it was a first and it marked the beginning of something new in my life I wanted to share it with those of you who are devoted to this blog. Thank you so much for reading, each and every one of you!! Including my Facebook friends. =)
Writing is now and always a huge passion in my life, as well as art in general. I never intend to "blog" or write about my disease, but it always somehow bleeds through my words. It is a part of who I am yet not who I am. I am a mother, a child, a sister, a daughter.....to evolve deeper, I am a writer, an artist, a lover, a fighter for my life and keeper of my home. I live to love and love to live. Life for me is bittersweet. I am the girl that writes all of her great ideas on the back of Starbucks napkins. I lose all of my life altering writings in the canned food aisle at the grocery store, but you can't win them all. They always seem to come to me when I can't get to pencil and paper. I spend a lot of my time trying to stay well. I only have one body so I have to be really good to it, amazing at that. Despite all the horror, sleepless nights, and traumatic turns Cystic Fibrosis has brought to my life, I have to say it has been a blessing. Without it I would not be me, and I would not know of a God who is bigger than me and bigger than this disease. Without it I would not know a love for my daughter that expands into another dimension, another time even. To desire to watch her grow into the woman God created her to be. To celebrate with her highest achievements and to pick her up when she fails, because she will fail, and she will be stronger because of it. Without it I would miss moments. Moments that pass by others like the wind blows. Watching a bird drink the morning dew on the grass out on my lawn. Hearing the beautiful etched silence first thing in the morning while the world sleeps. Without it I wouldn't know my husband. I wouldn't know what it is like to reach for him in the night and wanting to hold him forever. Forever. I would not know the depth of the meaning of the word forever. How it seems so beautiful when it is always an arm stretch away. No, none of this I would know. For me, my disease is vulnerable, fragile, ugly, yet precious. Being sick.....being well....being somewhere in between. It feels as if before the world ever stood, before we were ever blown from dust, when time hung empty in a black hole, even then I was a thought, I was an idea waiting to happen, and it was then God bent down and whispered a wonderful secret into my ear, that others will have to live a lifetime to learn. Yes it was then I was given Cystic Fibrosis. =)
Click on the logo to go to Cysticlife.org!!!I wrote my first blog on Cysticlife.org tonight and thought I would share it here as well. I will not be doing this with all of my blogs however since it was a first and it marked the beginning of something new in my life I wanted to share it with those of you who are devoted to this blog. Thank you so much for reading, each and every one of you!! Including my Facebook friends. =)
Writing is now and always a huge passion in my life, as well as art in general. I never intend to "blog" or write about my disease, but it always somehow bleeds through my words. It is a part of who I am yet not who I am. I am a mother, a child, a sister, a daughter.....to evolve deeper, I am a writer, an artist, a lover, a fighter for my life and keeper of my home. I live to love and love to live. Life for me is bittersweet. I am the girl that writes all of her great ideas on the back of Starbucks napkins. I lose all of my life altering writings in the canned food aisle at the grocery store, but you can't win them all. They always seem to come to me when I can't get to pencil and paper. I spend a lot of my time trying to stay well. I only have one body so I have to be really good to it, amazing at that. Despite all the horror, sleepless nights, and traumatic turns Cystic Fibrosis has brought to my life, I have to say it has been a blessing. Without it I would not be me, and I would not know of a God who is bigger than me and bigger than this disease. Without it I would not know a love for my daughter that expands into another dimension, another time even. To desire to watch her grow into the woman God created her to be. To celebrate with her highest achievements and to pick her up when she fails, because she will fail, and she will be stronger because of it. Without it I would miss moments. Moments that pass by others like the wind blows. Watching a bird drink the morning dew on the grass out on my lawn. Hearing the beautiful etched silence first thing in the morning while the world sleeps. Without it I wouldn't know my husband. I wouldn't know what it is like to reach for him in the night and wanting to hold him forever. Forever. I would not know the depth of the meaning of the word forever. How it seems so beautiful when it is always an arm stretch away. No, none of this I would know. For me, my disease is vulnerable, fragile, ugly, yet precious. Being sick.....being well....being somewhere in between. It feels as if before the world ever stood, before we were ever blown from dust, when time hung empty in a black hole, even then I was a thought, I was an idea waiting to happen, and it was then God bent down and whispered a wonderful secret into my ear, that others will have to live a lifetime to learn. Yes it was then I was given Cystic Fibrosis. =)
Saturday, January 9, 2010
I Will
Today marks one week, seven days exactly, since Sam and I bought our gym membership. I upped my reps and my weight today. It was so exciting for me. I must say I have officially survived Round 1 of Cough Fest 2010, but isn't that what all of this is about anyway!! Coughing, moving junk inside of my chest, feeling my ribs rattle and shake as I pump the weight. It feels absolutely incredible!!! I have been out of the gym for going on four years. In those four years my life has changed incredibly. I have had ups and downs. I met Sam and started a new life as his wife. My health also took a plunge and my FEV1 fell from the lower 50's to the low 30's. What happened?? What made the sudden change? A year ago I went to the doctor and pulled my numbers up about 20%. That year I also was only hospitalized twice. That was a good year. Then my numbers fell again. The doctors were pleased when they pulled up because it showed I didn't have permanent damage to my lungs, not yet. I can remember in my early 20's blowing in the high 80's like it was nothing. Now I feel like it takes a miracle for me to just keep my numbers stable. So I had to make a decision, a choice. Life was going to happen whether I liked it or not. I could either sit around and let this disease have my body, or I could do what I always said I would and go out kicking and screaming. And I must say I am learning to love to kick and scream. =) This girl is not going down without a fight!!!
The gym has picked me up in so many ways. It is my favorite part of my day. I will admit that it is hard watching everyone doing cardio. Cardio is not such a great friend of mine. My heart rate gets extremely high with very little cardio so I have to pace myself which I don't like at all. Here is a little secret of mine, I am a runner at heart. I know it sounds so crazy to even think of the idea. I am sure my family would laugh if they knew my passion to run. But it has always been there. I was never into sports growing up, but I always loved to run. I can remember racing my boy cousins and winning more times than not. I was quick on my feet and I loved the way it felt. It was freedom for me. If I would have had half the drive I do now when I was well, when I was teenager, I would have joined track. Of course the drive I have is the type of drive that usually only comes with age. It did me anyway. So it is hard when I can only walk ten minutes on the treadmill because my heart rate will fly sky high and those around me are RUNNING. I want to run. I want to feel myself skip, run, hop without losing my breath. I want to get up in the morning while the rest of the world is still sleeping and listen as my feet hit the pavement, keeping rhythm, while the sun comes up against my back. I want this. I want this more than anything. I want to be healthy. I want to live. I want to enter marathons and races and finish, not finish first, not even second but just simply finish. It is a desire that is embedded deeply into who I am. God tells me I should, I need to, I want to. He says it is part of my story.
So today marked a week at the gym. I did not run. I did do more reps with more weight. But no I did not run. But...I will. It may not be tomorrow. It may not be next month. But I will run. Not only will I run but I will get up in the morning while the rest of the world is still sleeping and listen as my feet hit the pavement, keeping rhythm, while the sun comes up against my back.
The gym has picked me up in so many ways. It is my favorite part of my day. I will admit that it is hard watching everyone doing cardio. Cardio is not such a great friend of mine. My heart rate gets extremely high with very little cardio so I have to pace myself which I don't like at all. Here is a little secret of mine, I am a runner at heart. I know it sounds so crazy to even think of the idea. I am sure my family would laugh if they knew my passion to run. But it has always been there. I was never into sports growing up, but I always loved to run. I can remember racing my boy cousins and winning more times than not. I was quick on my feet and I loved the way it felt. It was freedom for me. If I would have had half the drive I do now when I was well, when I was teenager, I would have joined track. Of course the drive I have is the type of drive that usually only comes with age. It did me anyway. So it is hard when I can only walk ten minutes on the treadmill because my heart rate will fly sky high and those around me are RUNNING. I want to run. I want to feel myself skip, run, hop without losing my breath. I want to get up in the morning while the rest of the world is still sleeping and listen as my feet hit the pavement, keeping rhythm, while the sun comes up against my back. I want this. I want this more than anything. I want to be healthy. I want to live. I want to enter marathons and races and finish, not finish first, not even second but just simply finish. It is a desire that is embedded deeply into who I am. God tells me I should, I need to, I want to. He says it is part of my story.
So today marked a week at the gym. I did not run. I did do more reps with more weight. But no I did not run. But...I will. It may not be tomorrow. It may not be next month. But I will run. Not only will I run but I will get up in the morning while the rest of the world is still sleeping and listen as my feet hit the pavement, keeping rhythm, while the sun comes up against my back.
Wednesday, January 6, 2010
The New Year =)
Okay first.....I am neglecting my blog. I realize that. However when the choice is to neglect my blog, or neglect my life, sorry, but the blog is going to lose every time. I have big plans for my writing and hopefully one day will find more time to put more energy into it. As of right now being busy in life is just fine with me. I always say I would rather be busy than not. That is always true, I would rather have a life to live than not.
So updates.......
Sam has been home a lot=ME VERY HAPPY! =) Sam is on salary pay so it is really a good thing, since he has only been working about two days a week. He has been studying for his exam in February. He is trying to get registered in NCV. So please be praying for him. For those of you who do not know what Sam does, he works in Neurology. He is a Neurodiagnostics Tech. Basically he tests people for nerve damage. He is working on his VNG registry now and is pretty much registered, just waiting on the certificate to come in the mail. Those of you who know Sam, know how huge of an accomplishment all of this is. We will definitely be framing his registry certificates. =)
Christmas came and Christmas went. We had a really great Christmas, as usual. I am still in the process of pulling decorations down. Finally got the tree down last night, so we are in the home stretch now. Sam and I joined a gym, how cliche' of us, right?? Well this was different. Even though we joined during the new year(which the purpose was to get a better rate), this is NOT a new year resolution in any way. Before I met Sam I was a member of a gym and worked out no less than three days a week. I ate organic ONLY (no exceptions!) and took extremely great care of my body. Sam did the same minus the organic. Since Sam was a cheerleader he was very obsessed with body building and weight lifting. However when we fell in love, I guess you could say, we ditched the whole health thing. Not sure why. I do remember the first time Sam brought frozen pizzas over to my apartment and stuck them in my freezer though. I thought I was going to have a panic attack!! =) Sam is currently cutting weight and doing a great job at it. I, however, am not cutting weight. Due to my small size anyway, and the problems I have with my health, trying to lose weight would not be in my best interest. So I am lifting weights like a mad woman. We switch, legs and arms, every other day. It has been incredible thus far. Our first day to the gym was like slipping into an old skin for me. I love everything about the gym, the people, the atmosphere, and the energy. We have been spending about two hours a day there. We decided we would go EVERY day for four weeks and then start skipping one day on the weekend.
My motivation. My motivation is about 4 1/2 feet high, blond, green eyes and is in the third grade. That is the reason I work out. I work out to live. It isn't because the media tells me I should look a certain way but just simply because I think waking up in the morning would be pretty cool and I want to make sure I do it. =) I know I push myself sometimes beyond my limit. When I feel like I am reaching my limit but want to go further, I just simply make a new limit for myself. Sam is truly the heart of my health. There is no better way to describe him. He knows when I am out of breath before I do. He coaches me, pushing me to do more sets when I am tired, walking my my machine adding weight to what I am already lifting, only to help make me stronger. It is almost as if I feel that I am preparing for a battle. My body has to be in the best shape it can be, so when I get sick, I am able to fight off infection that much easier. Three things that truly make me love Sam more than anything else.
1. He loves Peyton like she is his.
2. He worships with me, not only on Sunday, but on Monday, Tuesday, Wednesday, Thursday, Friday AND Saturday.
3. He pushes me when I want to quit.
I will try to post updates on the gym as well as my lung function when I can. As of right now I have not been in the hospital since AUGUST!! YAY GOD!!! How amazing is He!?!?
In other news, I have a piece of art that may just be the best piece I have ever done that is UNFINISHED. It is pretty much all I think about. We moved Pey's room over the holidays and eliminated the play room since she no longer has any use for it. We now have an art room or studio, whichever you would like to call it. My painting is in there calling my name. I have never poured myself into one piece so much. I wouldn't really call it a painting....it is more just a piece of art. I will post pictures as soon as it is finished and you will know what I am talking about. The only way I can describe the experience is this......I am 26 years old, I have been painting since I was 12, constantly switching styles, from abstract, to still life, to different mediums, I have done just about everything and it just now feels like I finally found myself in my art. I found a technique that works for me. Something that people will be able to look at my pieces and say that is a Summer Welch piece. So I am very excited about it. I have thought about furthering my education and going to college for art. After all my plans had always been to go to an art school in New York, well until, my "motivation" came along. Haha Which I would NEVER change for the world. I know the New York thing is out of the question now, but it still appeals to me to learn techniques. That is really where my craft lacks. I have the ability but not the tools, if that makes sense. Maybe this year will bring new things to my door. Who knows. Maybe I will go back to school. If for nothing else but for the sake of learning. Oh how I do love to learn.
Okay that is all for now folks. If you have read this far then thank you. I am still currently working on my book for those of you who are wondering. It has turned into a God thing for me. I am now on His time line, not mine. When He wants me to write He gives me the words. So it isn't anything I can rush. I will try to post some excerpts from it soon.
I love you all and hope 2010 proves to be an astounding year for each of you!!
Peace, Love and all of that hippie jive. =)
So updates.......
Sam has been home a lot=ME VERY HAPPY! =) Sam is on salary pay so it is really a good thing, since he has only been working about two days a week. He has been studying for his exam in February. He is trying to get registered in NCV. So please be praying for him. For those of you who do not know what Sam does, he works in Neurology. He is a Neurodiagnostics Tech. Basically he tests people for nerve damage. He is working on his VNG registry now and is pretty much registered, just waiting on the certificate to come in the mail. Those of you who know Sam, know how huge of an accomplishment all of this is. We will definitely be framing his registry certificates. =)
Christmas came and Christmas went. We had a really great Christmas, as usual. I am still in the process of pulling decorations down. Finally got the tree down last night, so we are in the home stretch now. Sam and I joined a gym, how cliche' of us, right?? Well this was different. Even though we joined during the new year(which the purpose was to get a better rate), this is NOT a new year resolution in any way. Before I met Sam I was a member of a gym and worked out no less than three days a week. I ate organic ONLY (no exceptions!) and took extremely great care of my body. Sam did the same minus the organic. Since Sam was a cheerleader he was very obsessed with body building and weight lifting. However when we fell in love, I guess you could say, we ditched the whole health thing. Not sure why. I do remember the first time Sam brought frozen pizzas over to my apartment and stuck them in my freezer though. I thought I was going to have a panic attack!! =) Sam is currently cutting weight and doing a great job at it. I, however, am not cutting weight. Due to my small size anyway, and the problems I have with my health, trying to lose weight would not be in my best interest. So I am lifting weights like a mad woman. We switch, legs and arms, every other day. It has been incredible thus far. Our first day to the gym was like slipping into an old skin for me. I love everything about the gym, the people, the atmosphere, and the energy. We have been spending about two hours a day there. We decided we would go EVERY day for four weeks and then start skipping one day on the weekend.
My motivation. My motivation is about 4 1/2 feet high, blond, green eyes and is in the third grade. That is the reason I work out. I work out to live. It isn't because the media tells me I should look a certain way but just simply because I think waking up in the morning would be pretty cool and I want to make sure I do it. =) I know I push myself sometimes beyond my limit. When I feel like I am reaching my limit but want to go further, I just simply make a new limit for myself. Sam is truly the heart of my health. There is no better way to describe him. He knows when I am out of breath before I do. He coaches me, pushing me to do more sets when I am tired, walking my my machine adding weight to what I am already lifting, only to help make me stronger. It is almost as if I feel that I am preparing for a battle. My body has to be in the best shape it can be, so when I get sick, I am able to fight off infection that much easier. Three things that truly make me love Sam more than anything else.
1. He loves Peyton like she is his.
2. He worships with me, not only on Sunday, but on Monday, Tuesday, Wednesday, Thursday, Friday AND Saturday.
3. He pushes me when I want to quit.
I will try to post updates on the gym as well as my lung function when I can. As of right now I have not been in the hospital since AUGUST!! YAY GOD!!! How amazing is He!?!?
In other news, I have a piece of art that may just be the best piece I have ever done that is UNFINISHED. It is pretty much all I think about. We moved Pey's room over the holidays and eliminated the play room since she no longer has any use for it. We now have an art room or studio, whichever you would like to call it. My painting is in there calling my name. I have never poured myself into one piece so much. I wouldn't really call it a painting....it is more just a piece of art. I will post pictures as soon as it is finished and you will know what I am talking about. The only way I can describe the experience is this......I am 26 years old, I have been painting since I was 12, constantly switching styles, from abstract, to still life, to different mediums, I have done just about everything and it just now feels like I finally found myself in my art. I found a technique that works for me. Something that people will be able to look at my pieces and say that is a Summer Welch piece. So I am very excited about it. I have thought about furthering my education and going to college for art. After all my plans had always been to go to an art school in New York, well until, my "motivation" came along. Haha Which I would NEVER change for the world. I know the New York thing is out of the question now, but it still appeals to me to learn techniques. That is really where my craft lacks. I have the ability but not the tools, if that makes sense. Maybe this year will bring new things to my door. Who knows. Maybe I will go back to school. If for nothing else but for the sake of learning. Oh how I do love to learn.
Okay that is all for now folks. If you have read this far then thank you. I am still currently working on my book for those of you who are wondering. It has turned into a God thing for me. I am now on His time line, not mine. When He wants me to write He gives me the words. So it isn't anything I can rush. I will try to post some excerpts from it soon.
I love you all and hope 2010 proves to be an astounding year for each of you!!
Peace, Love and all of that hippie jive. =)
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