Tuesday, July 6

Chew It Up..and Spit it Out...CF

Exhausted. Drained. Pissed. Frustrated. Upset. Just a few words to describe my thoughts over the weekend. What a weekend it was?! It was suppose to be relaxing for us all. We drove 4 hours to see the eastern shore and spend time with family. I think it was anything BUT. Madeline threw up most of the day Thursday when we arrived. Friday she was doing much of the same. Saturday came the DREADED cough. It was "the cough" I have nightmares about her having. That nasty, wet, mucusy cough. The cough that I feel like it eating at my child. Saturday was a lot of pure denial. It's just what she is eating or she is tired or the salt air is bringing it up. Oh god no. Oh god no. Then, came Sunday and it was more frequent and worse. I laid in bed on Saturday and blamed myself for giving her this horrible disease. What next? My mind was racing. Seriously? This is just NOT happening. It's like a constant struggle with that damn disease. You think you always are one step ahead of it. We give a lot to make sure that M is not exposed to these germs..and here we go. I feel as though I am a warrior fighting off the enemy that cannot be seen but only heard. Every cough, every motherly cringe, every flashback of her diagnosis, every promise to myself that I would get through the bad times. God. Not now! Then when? NEVER. Why is this happening? Saturday was a blur. I was tormented by this cough. It ruined my beach stay. It took over my mind and gave me so many worries and guilt. The damn enemy was pushing through and I was pissed. Really pissed. How did she get this? Where did it come from? Why? Why? Why her? Why Conner? Why Mary? Why do all of these people have to fight this stupid disease? Here goes my stability...my composure. It went out the window on Saturday. I lost it. I felt sorry for my husband and my family. My only concern was Madeline. Sunday..the questions came...do I take her to the walk in clinic? the ER? do we wait it out? What to do? Where to run? When can I wake up and and this cough will be gone? Where is the DAMN cure? A clinic visit helped some of what I was feeling....and we learned that Madeline has an ear infection. Then the questions again. Is this because of an infection? Is this the start of what is going to get worse? What to worry about now? Is my life going to be a constant worry game if I cannot get over a wet cough?My mind has been a roller coaster. We got back in town last night at 1am. M is on amoxicillian twice a day. Hopkins mentioned that they wanted to see how she does on it for a week and to call if her cough doesn't clear up or gets worse. The nurse was very nice and I think she sensed my panic. She assured me that Madeline's cultures have always been clear so they have no reason to be concerned yet. I know that amox. is not a big gun drug for CF...so I am not entirely optomistic that it will fix it all..but, she is feeling better and is not arching her back in pain while taking a bottle. Her energy level is back up but that damn cough. That stupid cf. It haunts me in bed, in my shower, in my thoughts...in my nightmares., in her cries...I cringe every time I hear it and think about what her diagnosis really means. Maybe I am in denial? Madeline has been doing so well medically. It just hits home..hard. This CF thing has affected too many people lately....and even a wet cough angers me. We have never had a "cough", a wet sound, a panic like this..as small as some may think....I worry. I lay in bed and worry about 22 year old Mary who passed away this morning with CF...I worry about the Jones Family...I worry.... I hate you CF. I hate you.


  1. So neat! I hope your blog helps other families. I know that you and Jack spend a lot of time learning about CF.

  2. I'm right there with ya Sandy. Boo on stupid CF. Please keep me updated on M's cough. I'm praying for the cough to go away quickly. And I don't know if this makes you feel any better, but I have the same thoughts constantly running through my mind. Even now when Bryce is clear and healthy. CF seems to always be there in my mind - a thorn in my thoughts. Hugs...

  3. Sandy! I'm so glad that you decided to share this with us. Blogs are a great way to learn and share information and I know Madeline's story will really help others. I'll be praying that she's feeling better in a jiffy. Love you all.


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