Life's like a jump rope

C....F.... who would think those two little letters would have such a huge impact on our lives. Not me... I can not get over how fast our lives can do a "180". Those two little letters have totally rocked my world. Life has changed so much from them. I can not stop researching. I can't stop worrying, and I really really can't stop THINKING. It's all consuming... I wake up and I am worrying about breathing treatments getting finished on time, I worry if Kaitlyn is going to feel any worse or I am praying that she is feeling even a little bit better.I am thinking of ways to improve our fundraising, or planning on what to do next.... I know that we are still lucky. I see posts on facebook or in others blogs about loved ones passing on or they are just sliding down that slippery slope of poor health. I know that it could be worse, and I worry that it will be.... When I go to bed at night, I am worrying about Kaitlyn staying up so late to finish breathing treatments, or if she's gotten enough sleep because she has to get up in a few hours and do it all again. I worry about whether I really should pull her out of the public school system against her wishes,and despite the doctor saying its not necessary. I worry that maybe because I haven't yet, it's my fault she's now cultured positive for pseudomonas. As if the guilt for passing on the gene causing the CF wasn't bad enough. I really worry that she has been fighting infection for almost 2 whole months, and that she wakes up every morning to tell me that her throat is still hurting or hurting again, or hurting worse... I panic every time I see the school's number show up on my phone that it's going to be another call telling me that Kaitlyn is having more coughing fits, or coughing up more/worse mucus, or that her throat is hurting so bad I need to bring her something, or worse, one I haven't gotten yet... and that unknown is probably the worst. I pray daily for my daughter's health to improve, I pray daily for researchers and scientists to find a cure. I pray daily that maybe this has all been a horrible nightmare and that maybe if I pinch myself hard enough I may just wake up. I pray for all those that I read and hear about who have lost loved ones to this horrible disease, every single one of them touch my heart. I pray for those who are in the last stages of their battle, as well as those just beginning it, or anywhere in between. For awhile when Kate was still being tested (she had a total of 3 sweat tests) I prayed that each one of the test results were mistakes... that the next one would be good news. Then after diagnosis I was so devastated I quit praying for a little while. I read something, just an excerpt from a book written by a person who has since passed from CF.... his sister asked him if he was mad at God for giving him CF, and he responded, "God didn't give me CF, two bad genes gave me CF, God gives me the strength to fight it". It helped me realize that God didn't do this to my daughter, and it's okay to lean on him. I am trying so hard to give my burdens to him.. why am I failing so miserably?  My 11 year old daughter is handling this so much better than me. She always has a smile on her face and a song on her lips. Well... almost always... lately mornings have been particularly rough on her, and she is going through phases of fatigue throughout the day, but she still usually smiles through it... It's funny, you can have good days where you are revved up and full of fight....  and you can have bad days where it all seems so overwhelming.... it's like one of my (and Kaitlyn's) favorite songs from Blue October called Jump Rope.

 "I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope

Up down
Up down
Up down
Up down yeah
Remember life's like a jump rope...."

Well... except I want to hear (not just say) that everything is going to be okay... but it sure is up, down, up, down, up, down...... 

Dear Lord.... these burdens are too heavy... I give them to you Lord.... please carry them for me. Thank you Lord. And Lord, if you could, please let me know that it will all be okay. - Amen