Nobody knows what it's like to be around me at my moments when I'm weak. Very few see it maybe only 4 people. The weak moments where I lay in bed and my dad brings me apple juice in my favorite hello kitty glass with a straw.
Those moments I hate feeling so weak and it would take just one thing to set me off and I'd be an emotional disaster. But that's the true and ugly part of cf that you don't see. Only few really know the whole story on cf, what it does to you and the ones you love the most. To see the agony in Aaron's face as he gives me my most treasured gift...a hand hug. I know he's worried. I know he is concerned and his eyes give it away. My dearest mother lays in bed with me while I'm hooked to ivs and feeding tubes. Just her company is enough to make me feel better. I'm just thankful we have that relationship and more thankful we aren't in the hospital.
It's easy at times to see things and see how bleak the outcome is. Today was one of those days for me. But im aloud to have those days. It's normal feeling and emotions. I just have to make tomorrow better then yesterday. And if I do that I have no where else to go but up.
So here's to tomorrow. May it be less bumpy...more smiles and better spirits. But if its not then that's fine I'll wait and have my good day...just you wait and see
Tuesday, October 23, 2012
Sunday, October 14, 2012
Dear...
Dear Uncle Jody
Last night Dad and I were talking about you and how you were when dad was growing up. You were good to him so thank you for that. I always think of you and what it would of been like to have you around. I imagine like my Dad I would love you unconditionally. You would be silly with me when I was younger and as I got older you would be like another Dad to me.
Daddy says Aaron looks like you. I can see it too now after he said something. You would of loved Aaron. Everyone does. I think you and him would have a special bond. He's a lot like you.
It's silly but I love you even though I don't know you. I miss you but I have never seen you.
Aunt Dottie tells me about how silly and hyper you were growing up and how you taught her to always leave the people you love with a hug and a "I love you". I do that too.
Uncle Jody, you should see Joe your son. He's a great man. Great father. You would be proud. He came to our lives close to 8 years ago. I feel deep in my heart you had a part in bringing him close to us. I think he needed us but we really needed him too. I love Joe like my brother. A good man who is fun and silly I really think you two are a lot alike. At least in my mind. Thank you for everything you left behind the memories and the lessons.
I would hope their is a heaven just for the simple fact someday you and I can meet and I can finally see you. You are missed and you are loved but just in case you forgot I figured it wouldn't hurt to tell you
Goodnight sleep tight
Last night Dad and I were talking about you and how you were when dad was growing up. You were good to him so thank you for that. I always think of you and what it would of been like to have you around. I imagine like my Dad I would love you unconditionally. You would be silly with me when I was younger and as I got older you would be like another Dad to me.
Daddy says Aaron looks like you. I can see it too now after he said something. You would of loved Aaron. Everyone does. I think you and him would have a special bond. He's a lot like you.
It's silly but I love you even though I don't know you. I miss you but I have never seen you.
Aunt Dottie tells me about how silly and hyper you were growing up and how you taught her to always leave the people you love with a hug and a "I love you". I do that too.
Uncle Jody, you should see Joe your son. He's a great man. Great father. You would be proud. He came to our lives close to 8 years ago. I feel deep in my heart you had a part in bringing him close to us. I think he needed us but we really needed him too. I love Joe like my brother. A good man who is fun and silly I really think you two are a lot alike. At least in my mind. Thank you for everything you left behind the memories and the lessons.
I would hope their is a heaven just for the simple fact someday you and I can meet and I can finally see you. You are missed and you are loved but just in case you forgot I figured it wouldn't hurt to tell you
Goodnight sleep tight
Thursday, October 11, 2012
Smile and nod
Sometimes the task if telling others about your disease is tiring. The questions are easy to answer but when they start drifting into my so and so has asthma or I.b.s. and it's sooo hard for my so and so. I just have to smile and nod because the other part of me wants to scream "did you not listen to what I just said" but that would use more effort then it's probably worth. I find majority are interested to know your struggles and issues with health but only is you agree their health issue is just as important as yours.
Again just smile and nod in agreement when in your head your saying No. Nope. No way. Not going to happen!
Every disease is awful let me make that perfectly clear. The " invisible" diseases definitely got the short end of the stick when they were giving out awareness importance.
I'm constantly saying I wish people understand I might look good; hair make up done nice clothes I still care about my appearance but it isn't the only way to judge someone. I can look so normal but struggle to get outta bed or, even a shower sometimes just isn't happening. Of course those people aren't their for those moments but those are real me. Coughing till I throw up. Mucus everywhere tissues covered in snot. Hair exactly as it pleases messy and wild...and I don't look so healthy without my coverup and blush. But it's me.
All I can be is me. Somedays you get the "healthy" looking Jess but if your one of the few you see just normal ol Jess
To all my cysters who are not feeling good and are on the "juice" hope things turn around quick. oxox
Again just smile and nod in agreement when in your head your saying No. Nope. No way. Not going to happen!
Every disease is awful let me make that perfectly clear. The " invisible" diseases definitely got the short end of the stick when they were giving out awareness importance.
I'm constantly saying I wish people understand I might look good; hair make up done nice clothes I still care about my appearance but it isn't the only way to judge someone. I can look so normal but struggle to get outta bed or, even a shower sometimes just isn't happening. Of course those people aren't their for those moments but those are real me. Coughing till I throw up. Mucus everywhere tissues covered in snot. Hair exactly as it pleases messy and wild...and I don't look so healthy without my coverup and blush. But it's me.
All I can be is me. Somedays you get the "healthy" looking Jess but if your one of the few you see just normal ol Jess
To all my cysters who are not feeling good and are on the "juice" hope things turn around quick. oxox
Sunday, October 7, 2012
Happy birthday!!!
Happy birthday Megan
Well I imagine your party is amazing. Who made your birthday cake? Did they pull ALL those candles on the cake? Lol I bet you picked plates with lots of pink. Well because pink is so you! I don't know what presents you will get in heaven...shoot you might not need presents if heaven is as great as they say. I wish for a moment I could see you in heaven and see what you see and feel what you feel.
Your mom misses you so very much it's obvious. I hope you are with her always she needs you. I couldn't imagine the feeling that come with loosing your daughter and your the only person who could comfort her.
I dreamt of you not to long ago...you with pink hair dancing and having fun. It made me happy.
I hope I find the strength you possessed cause you are one tough cookie. You never seemed to stop fighting and I don't know how you did it. I'm tired Megan and I haven't done/experience 1/2 the things you went through with your CF. I could use your uplifting view that always made me feel better about the situation. Megan my heart hurts for your family and friends mourning the loss of anyone is hard but when you loose someone like you, who truly was special and kind and beautiful inside and out is almost impossible to heal. But we love you and know what you would want is for us to find comfort in your Lord Jesus Christ.
Someday Megan just for you.
Well I imagine your party is amazing. Who made your birthday cake? Did they pull ALL those candles on the cake? Lol I bet you picked plates with lots of pink. Well because pink is so you! I don't know what presents you will get in heaven...shoot you might not need presents if heaven is as great as they say. I wish for a moment I could see you in heaven and see what you see and feel what you feel.
Your mom misses you so very much it's obvious. I hope you are with her always she needs you. I couldn't imagine the feeling that come with loosing your daughter and your the only person who could comfort her.
I dreamt of you not to long ago...you with pink hair dancing and having fun. It made me happy.
I hope I find the strength you possessed cause you are one tough cookie. You never seemed to stop fighting and I don't know how you did it. I'm tired Megan and I haven't done/experience 1/2 the things you went through with your CF. I could use your uplifting view that always made me feel better about the situation. Megan my heart hurts for your family and friends mourning the loss of anyone is hard but when you loose someone like you, who truly was special and kind and beautiful inside and out is almost impossible to heal. But we love you and know what you would want is for us to find comfort in your Lord Jesus Christ.
Someday Megan just for you.
