Sometimes It Is All About CF

It's hard sometimes for my life not to be "all about CF" as much as I try not to let it be.

I just returned from a visit to "Gramma's House" in Florida with my two kids who both have cystic fibrosis. My son is on an inhaled antibiotic which must be done three times a day. So the all-day plane trip from Seattle to Tampa needed to include plans for that including the cleaning and disinfection of the equipment.

Then of course there was the packing. A whole duffel bag filled with medications, nebulizers, mini-compressors, and other medical paraphernalia. Plus there was the vest system (a 40 pound machine that costs about $15,000) that I also had to bring along for our three week visit. And it all needed to be carried on the plane and checked through security. I looked on with envy at other travelers who only had one little bag to carry compared to our seven. Yes, seven. Including our lunch.

Then there was the dog. Yes, the dog. We brought her, too. Figured we brought everything else, might as well add her in. I almost brought the kitchen sink but found a work-around by using Control III to disinfect the antibiotic equipment instead...

The vacation was wonderful and I'd do it all again. Our philosophy has always been: "Live life well with CF, don't let CF run your life." It takes a lot of effort but we do this pretty well, I think. Our kids (so far) are very happy and have wonderful, can-do attitudes. They have enjoyed many years of relative "good health" filled with adventures and just being kids despite the one-to- two hours of medical treatments they need to do each day along with schoolwork, sports, friendships and extra-curricular activities.

Usually I am up to the task of being the "mom-glue" that holds it all together. But today, I feel weary and worn out with it all. My husband's six month job loss has created no small amount of stress- primarily around the medical insurance issues since just our "everyday" medications alone cost about $100,000 a year. Thank Heavens for pharmaceutical coverage which knocks this down to about $12,000 a year out of pocket- still a lot of money but it sure beats $100k!

Then there are the doctors' visits nearly every other week it seems lately, sinus surgeries, and hospital stays for IV antibiotics. Now we have another upcoming visit to "Club Med" (aka: the hospital for a two week round of IV antibiotics) for my son next week as well as a sinus surgery for my daughter- all squeezed in right before school starts. Back to school shopping anyone?

We are so grateful that my husband now has a good job with excellent medical benefits. We hope that life will stabilize soon. Whatever "stabilize" really means when you have two kids with CF. I think that means a lull in between the crises.

I am ready for a good, long lull right about now- after my daughter's surgery and son's round of IV antibiotics, of course. And, I'll do my best to remember that my children are learning how to handle hard times by my example. I know that if I have a positive, "we can get through this" attitude, they will too- now and in the years to come.

I think that's the hardest part of parenting- being a good example when I am weary and sad. But, as a parent educator by profession, the knowledge of how important this is to my precious kiddos will help to keep me on track. Even if I'm not perfect. It's good enough to be good enough. They will also learn by my example that it's okay to be sad and weary for a little while when life is hard. And, as I get back on track, they will learn from that, too.

- Lisa C. Greene, mom of two kids with cystic fibrosis, author and parent educator www.TipsForCFParents.com and www.ParentingChildrenWithHealthIssues.com