Tuesday, January 12, 2010

Top 10 Things I Would Never Do If...

Top 10 Things I Would Never Do If Lucy Didn't Have Cystic Fibrosis

10. High Calorie Diet~ Never would I spend any time at all agonizing over whether my two year old daughter had a total of 1700 calories for the day. I would not be adding butter, olive oil and mayonnaise to everything she eats in hopes that she won't lose weight. I don't think I would ever make her a Nutella chocolate sandwich with bacon and be so happy that she ate the entire thing. I don't think I would ever be worried about Lucy and malabsorption if she didn't have CF.

9. Salt~ Never would I add salt to all of Lucy's food and drinks. I would never have to worry about her sodium levels possibly causing her dehydration, especially in the summer when it gets as high as 108 degrees outside. Never would I have to supplement salt into my daughter's diet to insure proper moisture in the mucus linings in her little body. I don't think I would ever have to fathom the thought of my daughter's cells not working properly, if she didn't have CF.

8. Antibiotics~ Never would I put my child on antibiotics for just a sniffle or cough. I don't think I would ever allow her to be on three week courses of antibiotics multiple times a year. If Lucy didn't have CF, she would be fighting off infection on her own, building up her immune system. I wouldn't have to worry about infection burying itself deep inside the mucus lining of her lungs.

7. Poop inspections~ Never would I be so fascinated and interested in Lucy's poop. Never would my child's poop be so frequent, happening as much as eight times a day, and never would it be described in detail the color, size, texture and grease content. I would have never taken a photograph of her very first bowel movement while she was still in the NICU after two weeks of waiting for it. A good, solid poopy diaper really makes my day.

6. Medicate Daily~ Never would I have to give my child digestive enzymes every time she ate nor would I have to give her inhaled breathing treatments, sometimes 4-5 times a day. Never would I have to pound Lucy chest manually or strap her into a The Vest to help shake the thick, sticky mucus in her lungs in likeness of trying to get the last of the ketchup to fall down the side of a Heinz 57 bottle. I wouldn't have to give her a laxative every day so that her rectum didn't fall out when she strained to poop. Without CF, I wouldn't have to manually push my daughter's rectum back into her little body. Without CF, Lucy would not have to take seven different medications everyday.

5. Clean and Sanitize~ Never would I have to be so diligent with disinfecting nebulizer cups by boiling them for 5 minutes. Never would I be so close in reach of my bottle of Purell and Clorox wipes. I wouldn't worry so much about what germs were floating all around us. If Lucy didn't have CF, I may not be so worried about what was on the hands of the old woman who doted over Lucy and pinched her cheeks while we were out shopping.

4. Doctor/Patient Bond~ Never would I be so in touch with Lucy's doctors, if she didn't have CF. Every sniffle and every weird cough and I'm on the phone immediately. Never would I divulge my fears, hopes and dreams that I have for Lucy, to a doctor. Her team of CF doctors and nurses, that have been with us from day 1, have been a tremendous support that I would never expect from regular doctors. They are watching Lucy grow and thrive just as I am and have become an essential part of her wellness and my sanity.

3. Television~ Never would I let Lucy sit in front of the boob tube to watch Barney or Dora in order to get her to sit through an hour's worth of breathing treatments a day. Maybe with an exception of an occasional educational flick, I don't think I would have allowed Lucy to watch so much television. Without CF in our lives, I don't think I would be so grateful towards Disney and Nemo in particular.

2. CF Community~ Never in a million years would I have thought that I would find so many different outlets on the Internet to vent my CF mommy frustrations and fears or voice my opinions and ask questions and even answer some questions! I have found a whole Internet CF community that is so loving, knowledgeable, helpful and accepting of new comers. I have become good friends with some of them and I have never even met them in person. Without CF, I would have never met these amazing human beings who have inspired me and changed my life more than they know.

1. Blogging~ Never, ever, ever would I have expected to be blogging about my life and the life of my daughter. I really do lead a very boring, normal life but I have been know to have a few things to say! I am happy that I have this forum to document what Lucy and I do together. I hope that someone gets some use out of it and learns something from it. I hope these writings of mine will be read by new family member's of a CFer and is comforted by knowing that it is possible to lead a boring and normal life with CF in it. I hope that Lucy will read this blog when she is older and look back at all of our memories that we created together.

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