Before I had my son, I had organized my life in such a way that everything flowed in orchestrated harmony. But I found that as he grew I allowed his needs to eclipse my own, and my life soon fell out of balance.
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In the two and a half years since our son's cystic fibrosis diagnosis, we've learned how to build his care into our daily routine and manage his disease to the point that it's almost become -- dare I say -- normal. Here is a list of the top 10 things that are stressing me out more than my son's CF right now.
Over the years, I have received some tough questions from children with CF, but one has really stuck with me. And if I were asked it again today, I know exactly what I would say.
I read the blogs and stories parents write about their compliant CF kids, I hear CF adults speak about never missing a treatment or medication, and despite my best efforts, I am fighting a battle I never imagined with Betsy.
There have been a few moments over the past four years that have provided us with perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis.
When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
While I would have never asked for cystic fibrosis to enter my life, there is not a single day that goes by that I do not thank my lucky stars that I have the Foundation on my side.
When life was crazy busy having two babies born with CF, Marc and I would wake up 20 minutes earlier to make time for a cup of coffee together.
During our family round trip from Oklahoma to Florida, I learned a thing or two about traveling with a CF tot.
Going back to work was hard. So. Very. Hard. But with the mounting costs of cystic fibrosis, I didn't have a choice. The decision had been made for me.