CF stories

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anonymous

New member
i have been thinking about some of you on this post who are currently going through a lot of heartache....
Does anyone have any funny stories, poems, anedotes...etc.... to cheer us up
Have you all read the one about going to Holland...It was beautiful.........................and so very very true x

Paula

MUM to Joseph aged 2 w/o CF and Baby Ruby 3 months w CF...
 
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lovemygirl

New member
This is not a poem or anything but I wanted to share it with you just the same.
Five years ago today I gave birth to a beautiful baby girl named Ashley. We fell in love instantly. As much as we were devastated at the diagnosis of CF 8 weeks later we knew we were fortunate to have her, and she is doing well despite her condition. She is small in size, but has a big heart and her eyes and smile light up a room.
I reflected a lot on our lives today (her birthday) and realized that it would have been nice to have had a second child, but on the other hand we are fortunate to have her, since many people will never know the joy of loving a child like we do.
I had her birthday announced on the radio this morning, which the station does daily to anyone who requests it. The announcer has met Ashley on a few occasions at charity events for CF and the hospital where she attends CF clinic. She seems to have touched this man's heart and he has always been kind to her. When he announced her birthday he mentioned that she was one of the children that had represented the hospital she attends and then he added "every day is a gift". What could be more beautiful than that?
I am not saying that I don't have bad days as the parent of a CF child but today was a celebration of her life and we are hopeful that there will be many more birthdays to come.

Happy birthday to my little angel.
 
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JazzysMom

New member
OK I remember something from when I was little. Upon my diagnoses by Dr. Schwachman (sp?) at Bostons Baby Hospital 30 years ago, the enzymes I was put on were called Viokase which the same Dr. developed. Anyway they were compressed powder tablets not plastic covered beads like most are today. I use to lay my meds out on the counter for the morning so not to be rushed etc. We had a cat, Muffet, who loved the smell & taste of these enzymes. He would eat them. For a long time we thought we had a major rodent problem yet nothing else was chewed on nor was there any "droppings" to indicate a mouse family living with us. This went on for awhile with literally all the enzymes being eaten. Finally one morning my Dad who got up real early to go to work found the cat having an early morning snack on the counter. The mistery was solved, but I couldnt leave them on the counter anymore. From what I remember they were made out of sometype of pork fat ingredient or something that seemed to be favored by the feline family!
 
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anonymous

New member
This isn't a story but I do have some short video clips of my daughter with CF. She definately lift my spirits, so may she will lift your too <img src="i/expressions/face-icon-small-smile.gif" border="0">

<a target=new class=ftalternatingbarlinklarge href="http://www.jusspress.com/sydneybugsmom
">http://www.jusspress.com/sydneybugsmom
</a>
There is also a link to them on her website:
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/
">http://members.tripod.com/sydneymyers-ivil/
</a>
Hugs,
Kelli (mom of Sydney 2wcf)
 
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Seana30

New member
Kelli,

I watched the vidoes of your daughter. What a precious little girl! Thank you for sharing them. I have a 12 year old daughter, Courtney that was diagnosed with CF 2 years ago. Just wanted to say hi, and thanks for sharing.

Seana

mom to Lauren, 14, no CF- Courtney, 10, with CF- Cameron, 10, no CF
 
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JazzysMom

New member
I had my daughter watched the clips of Sydney with me. She couldnt believe that the Vest came in such a small size. They were all great to watch. She is cute!
 
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anonymous

New member
Kelli,

Adorable videos!!! It surely brightened my day! Sydney is such a beautiful little girl, love those curls!!!

Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF
 
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PreciousJewel

New member
Kelli
That was just Fab to watch.......She is such a little sweetheart......How wonderful to watch, that has really cheered me and my husband up.....My little boy Joseph was asking who she was.....
Paula
 
A

anonymous

New member
I have a funny CF-related story. My sister had CF and when we were little, my family were germ fanatics. It got so bad that they tied little colored bread ties around the handles of each of our cups. We were each assigned a color just to ensure that my sister did not drink after any of us. When my friends would come over, they all thought we were crazy with all the twist ties on our cups!
 
A

anonymous

New member
Awww Shucks, thanks for the compliments everyone! I am glad you like the videos. I am also glad that some kiddos get to see her doing the vest because I know it can mean a lot to them. There is a short clip on the video we got that came with the vest that has 2 kids doing their treatments and Sydney loves to watch them (over and over bc it is only 2 minutes long!).

Also, the enzyme loving kitty story and the twisty tie story were cute!

Hugs,
Kelli (mom of Sydney 2wcf)
 
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