by Sarah | Oct 31, 2007 | CF
I just received this in my mail box and wanted to pass it on! Help raise money for a cure! And get some Holiday shopping done!!
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Dear Friends,
Just in time for the holidays, we’d like to introduce our 65 Roses® Collection Store where you can shop for gifts and—at the same time—support the mission of the Cystic Fibrosis Foundation!
This special collection includes monogrammed blankets, umbrellas, wraps, personalized coffee mugs, and even piggy banks!
Click here to check out the collection and order your items today! Or, you can make a tax-deductible donation to the CF Foundation, if you wish.
As you may know, “65 Roses†is what some children with cystic fibrosis call their disease. But, making it easier to say does not make it easier to live with. You can help change that! By selecting gifts for yourself and loved ones, you will be showing your commitment to helping find a cure for CF.
Thank you for supporting our lifesaving mission. Together, we are adding tomorrows every day to the lives of those with CF.
Sincerely,
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(800) 347-2345
E-mail: DirectMarketing@cff.org
Web: www.65roses.cff.org/Shop
P.S. To help increase awareness of Shop for a Cure and the important work we do, please feel free to forward this message. Thank you for your commitment.
**To ensure delivery of gifts for the Holidays, please order by November 8th.
by Sarah | Oct 11, 2007 | CF
And honestly…this is the first illness in the house, beyond allergies, since K’s diagnosis. As the first official illness…and one that could translate into lung issues…I am admittedly a bit freaked out. Eventually it will become old hat…but I’m avoiding my own daughter in concern for her developing a cough. Every time I go near her, I use the hand sanitizer first…but I can’t use that on my face. I’m one step away from getting a mask from the garage so I don’t spread it when I pick her up…she’s such a snuggly, kissy thing…
So today I do battle with my own fears on top of the cold. I don’t want her sick…but I know it’s unavoidable in most cases. I’ll take my precautions and hope that it’s enough.
I’m thinking of getting hand sanitizer to place all over the house…getting us in the habit of using it all the time…but then I worry aobut using it ‘too much’. Catch-22’s here we come.
by Sarah | Oct 7, 2007 | CF
What is Cystic Fibrosis? The technical definition, according to the CFF website is as follows:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
But what is it to a parent?
When we got the diagnosis we got the cold rush of fear to our belly that no amount of “It’s not a death sentence” and “many people with CF live into their 40’s” could settle. Our pulmonologist is incredible. She’s one of the best in the country, and it’s so reassuring. We have a whole team on our side, and right now K’s lung functions are so good, and she sounds so clear compared to six months ago…
But no amount of clear and happy checkups remove that fear. It’s always in my belly. I can push it aside most days, but there are times that I look into her bright and happy big eyes and I wonder how long she truly has. How I’m so thrilled that she’s such a happy child, because I know she’ll enjoy her life for as long as she lives it.
You hold out hope for a cure, for your child to live longer than you…but in the back of your mind you hear the stories of the 9 year old that lost her fight…or your coworker’s wife is in the ICU…her youngest child only 2…and she can’t even go home and play with her. They each worry you.
The goal is to not let it rule your life…becuase you will never lose the fear of outliving your own child…EVER.
by Sarah | Oct 3, 2007 | CF
An event that happened two months ago still bothers me today. And now that I have this blog, I want to bring it up again.
A common misconception/fear about K’s illness is that it’s contagious. I’ll say it now, Cystic Fibrosis is NOT contagious! It’s a genetic disorder. Two carriers have to come together to create one full CF baby. You can’t get it by casual transmission.
This still bothers me today. Because two months ago M had her speech therapy session at the park (the therapists idea). While she was playing with her ST, I took K around and let her play, etc. I put her in a baby swing and was swinging her gently. Another mom with a baby a bit younger, but quite a bit bigger than K got on the swing next to me.
We talked for 10-15 minutes, swinging our girls. It was a nice conversation. We laughed, we went through how we became SAHM’s, our “surprise” babies…it was nice. I was thinking that she was so nice, and we seemed to have a bit in common. Then she mentioned K’s small size, and we started talking about the special needs stuff. Just in passing, I didn’t want to make a big deal of it. But then I did it. I said, “Just diagnosed with Cystic Fibrosis.” Again…just in passing, not a big deal…but everything changed in that brief moment.
My son ran up and I turned my back for two seconds…by the time I turned around she was gone. No goodbye, she practically ran with her girl to their car, loaded her in and took off.
Yes, it could be a coincidence…but my heart tells me it wasn’t. I got disenheartened that day. I knew my girls faced physical obstacles…but that was the first time I came face to face with the emotional impact their disabilities would bring to them.
