I have noticed something Cf slowly stole from me, my laugh. when others have theses amazing laughs I can't help but feel jealous when someone busts out a full belly laugh...it sounds so amazing to my ears. I have noticed I just slightly chuckle quietly not to disturb my lungs because any cystic will tell you when you laugh like a true laugh it turns into a coughing fit. A coughing fit that makes it hard to. breathe so those laughs come few and far between. Its amazing the things cf takes away and some come so quickly and some seem to take longer but cf is awful and it makes me sad to know its been so long since someone has heard me laugh. I was being evaluated for a lung transplant but was told I was to healthy so I got discharged from there full time care and only see them every 6 months, I was hesitant to even start the process. I felt like I didn't deserve to have a second chance that there were others who deserved to have more time and experience more love and support. see I have lived a full and happy life and if I died tomorrow I wouldn't doubt the love I experienced is enough to last me a life time and understand I have lived a full life. I started to think of the opportunities I would be able to experience and I started to think maybe I was deserving of a more time on this earth. I still believe I have time and transplant is in my future but down the line like maybe a few years if I'm lucky. I wanted to travel. I wanted to hike and work out in the gym. Swim without the fear of drowning but mostly I wanted to hear my laugh again. So someday when I get the chance to laugh like a true belly laugh it will bring me so much joy.you dont realize the little things cf steals from you.
Tuesday, July 23, 2019
Saturday, May 4, 2019
Month of May
Why part of me hates the month of May.
May is cystic fibrosis awareness month and so many people take the time to educate other on our awful disease.
This year I just hate everything about cf. I think of the ones I have loved who have passed and how this month is about awareness and education but my heart is somewhere else.
Maggie my first friend with cf passed before she was 16. I was 18 when I went to her funeral and sat right up from balling my eyes out thinking this was a cruel joke she was playing. I waited for her to laugh and wake up but it never happened. I remember so vividly her funeral and how her mom and grandma kept stroking her hair and saying how she would be so mad that it’s not the way she liked to wear it. At 18 I experienced my first real loss of someone who was fighting cf just like me.
Megan was a spitfire and southern belle. She was sweet and compassionate. I never met her but I loved her dearly. We texted back and forth we sent each other cards and packages when one was sick or just down in spirits. She had beautiful pink hair and had a transplant. She was the first person I “knew” who had a transplant and to watch her life change from hospital stays to clubs and dancing it gave me a hope and admiration for her determination to live her life. She got rejection and was always thinking of others and declined a second transplant because she didn’t want to take time away from her sisters and parents. She passed and I swear a piece of me died with her. My sweet friend became an angel leaving me behind. I wanted to much to go to her funeral but honestly I knew it wouldn’t heal my heart but only break it more.
Stephanie was shy and reserved but soon she became my lil cyster. Texting me asking advise about boys and dating. She was compassionate and caring and wanted to live. 16 years old. That’s how old she was when she passed. A baby. So much life she had to live. She wanted to get married and live to be the best aunt to her sisters baby. I loved sending her boxes of goodies as she spent a lot of time in the hospital at such a young age. I would of done anything just to get a text from her telling me thank you for all the candy and coloring books. When she passed it was sudden and she passed on a beautiful day. All I could think of was what a beautiful day to become an angel. And that’s what she always was. She was an angel on earth. I should of gone to her funeral and said my peace but I couldn’t. I regret that to this day and that’s something I have to live with and it tears my heart up.
Melissa. Pinky. So tiny and small when I met her though a mutual friend. She also was my lil cyster. She would txt and was best friends with Stephanie. It always seemed like they planned hospital stays together just so they could hang out. They worried me so much. Melissa was bold and vibrant. She was walking sassy-ness but in a good way. She was a rebel and I loved that about her. As she got older we lost touch and didn’t speak as much but when she passed I felt all these emotions knowing she put up one hell of a fight and was finally at peace and was with Stephanie again.
George and Christina. I didn’t know them well but I followed them closely. Brother and sister with cf. I saw myself in Christina and my brother in George. So when they one passed I just imagined my brother without me. And shortly after one moved along to heaven the other wasn’t far behind. It was like they did everything together. All I think about with George and Christina is my Aaron. And how he will someday be without me and what will he tell people when they ask him about me. Will he ever be okay? Will he sink into a depression and mourn me in a way only a brother could? I don’t know the answer to that but I know when something happens to me, he will have a hurt in his heart that no one will understand and I won’t be able to help him.
There are so many more I could tell you about but honestly the tears running down my face make it hard to see. So as many celebrate May as an awareness month all I can think of is these friends who should be celebrating and educating us but instead are in heaven watching over us. Cystic fibrosis is awful and mean and shows no mercy to any family. None of the families above deserve the heartache and tears this disease brings but it takes who it wants.
So this May my awareness is focused on the ones I miss the most. I try to honor them the best way I can. I live a life I hope they are proud of and someday when I go to heaven I will have friends waiting for me to hold my hand and some days that brings me comfort deep down in my heart. I won’t be alone and we will all be together again. Meeting some friends for the first time and seeing other again.
Maggie my first friend with cf passed before she was 16. I was 18 when I went to her funeral and sat right up from balling my eyes out thinking this was a cruel joke she was playing. I waited for her to laugh and wake up but it never happened. I remember so vividly her funeral and how her mom and grandma kept stroking her hair and saying how she would be so mad that it’s not the way she liked to wear it. At 18 I experienced my first real loss of someone who was fighting cf just like me.
Megan was a spitfire and southern belle. She was sweet and compassionate. I never met her but I loved her dearly. We texted back and forth we sent each other cards and packages when one was sick or just down in spirits. She had beautiful pink hair and had a transplant. She was the first person I “knew” who had a transplant and to watch her life change from hospital stays to clubs and dancing it gave me a hope and admiration for her determination to live her life. She got rejection and was always thinking of others and declined a second transplant because she didn’t want to take time away from her sisters and parents. She passed and I swear a piece of me died with her. My sweet friend became an angel leaving me behind. I wanted to much to go to her funeral but honestly I knew it wouldn’t heal my heart but only break it more.
Stephanie was shy and reserved but soon she became my lil cyster. Texting me asking advise about boys and dating. She was compassionate and caring and wanted to live. 16 years old. That’s how old she was when she passed. A baby. So much life she had to live. She wanted to get married and live to be the best aunt to her sisters baby. I loved sending her boxes of goodies as she spent a lot of time in the hospital at such a young age. I would of done anything just to get a text from her telling me thank you for all the candy and coloring books. When she passed it was sudden and she passed on a beautiful day. All I could think of was what a beautiful day to become an angel. And that’s what she always was. She was an angel on earth. I should of gone to her funeral and said my peace but I couldn’t. I regret that to this day and that’s something I have to live with and it tears my heart up.
Melissa. Pinky. So tiny and small when I met her though a mutual friend. She also was my lil cyster. She would txt and was best friends with Stephanie. It always seemed like they planned hospital stays together just so they could hang out. They worried me so much. Melissa was bold and vibrant. She was walking sassy-ness but in a good way. She was a rebel and I loved that about her. As she got older we lost touch and didn’t speak as much but when she passed I felt all these emotions knowing she put up one hell of a fight and was finally at peace and was with Stephanie again.
George and Christina. I didn’t know them well but I followed them closely. Brother and sister with cf. I saw myself in Christina and my brother in George. So when they one passed I just imagined my brother without me. And shortly after one moved along to heaven the other wasn’t far behind. It was like they did everything together. All I think about with George and Christina is my Aaron. And how he will someday be without me and what will he tell people when they ask him about me. Will he ever be okay? Will he sink into a depression and mourn me in a way only a brother could? I don’t know the answer to that but I know when something happens to me, he will have a hurt in his heart that no one will understand and I won’t be able to help him.
There are so many more I could tell you about but honestly the tears running down my face make it hard to see. So as many celebrate May as an awareness month all I can think of is these friends who should be celebrating and educating us but instead are in heaven watching over us. Cystic fibrosis is awful and mean and shows no mercy to any family. None of the families above deserve the heartache and tears this disease brings but it takes who it wants.
So this May my awareness is focused on the ones I miss the most. I try to honor them the best way I can. I live a life I hope they are proud of and someday when I go to heaven I will have friends waiting for me to hold my hand and some days that brings me comfort deep down in my heart. I won’t be alone and we will all be together again. Meeting some friends for the first time and seeing other again.
Wednesday, January 2, 2019
home is where the heart is
watching you leave is the hardest thing I go through...its not the constant poking and prodding or the lack of constant sleep. When you come I enjoy the company but its having that piece of home with me is what makes me feel complete. I miss you instantly when you walk away...some days its easier to sit by myself then to have to watch you walk away. this life isn't fair and it makes no sense how one thing doesn't always add up but we learn to roll with the punches and we learn to be a family miles apart. The distance is hard but once we all come together its like a musical in a movie, everything is in sync and perfect. I miss you more then you know and I know if you could stay you would, but I wouldn't let you...this isn't where you belong; its where I call home but its not where my heart is.
