I often think about the woman who will eventually marry my son. I think about what she is doing right now and what her life is like. Although I can't wait to meet her, at this point, I'm also sad thinking about not being the number one woman in Major's life.
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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.
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.
Cystic fibrosis can't take living away, especially when one loves life!
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
When my two boys with cystic fibrosis ask me about death, I don't see it as something to be feared or ignored. Rather, I view it as an opportunity to share information about CF and the truths of life in an appropriate and honest way.
They say it takes a village, and this is especially true when you are a single mother of two who also happens to have cystic fibrosis. Single parenthood as a person with CF can be crazy, but being okay with asking for help can make it easier.
I knew that I needed to make a change when I began checking on home from the office and checking on work at odd hours from home.