I just wanted to tell you how much I admire your courage and bravery. You and Virginia are truly blessed to have so much support and love around you, that makes so much of a difference!
As a fellow mom of a special needs child, I just have a little tidbit of advice that might sound silly. Give yourself a vacation once in a while from CF. I know that is impossible in terms of meds, etc, but I mean mentally. Let yourself truly forget once in a while (for at least a week at a time!) about cystic fibrosis and just enjoy the beauty of your child. Researching and thinking and being super pro-active is essential, but I speak from experience when I say that years of it non-stop will burn you out. Your fierce determination and devotion reminds me a lot of myself, but we’re running a marathon, not a sprint so you really have to pace yourself. Don’t forget to take care of yourself! And don’t let any nurses or Drs get you down- you know way more than they do about your girl. Than in itself can be very frustrating. I’ve found being very stubborn and overly gracious at the same time (even if I have to pretend) usually gets me the labs and referrals I want
Thank you again for sharing your blog, it is so beautiful and inspiring and full of hope and love! I really needed some inspiration today!
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February 21st, 2010 | 
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Hi Derek and Sarah,
I just wanted to tell you how much I admire your courage and bravery. You and Virginia are truly blessed to have so much support and love around you, that makes so much of a difference!
As a fellow mom of a special needs child, I just have a little tidbit of advice that might sound silly. Give yourself a vacation once in a while from CF. I know that is impossible in terms of meds, etc, but I mean mentally. Let yourself truly forget once in a while (for at least a week at a time!) about cystic fibrosis and just enjoy the beauty of your child. Researching and thinking and being super pro-active is essential, but I speak from experience when I say that years of it non-stop will burn you out. Your fierce determination and devotion reminds me a lot of myself, but we’re running a marathon, not a sprint so you really have to pace yourself. Don’t forget to take care of yourself! And don’t let any nurses or Drs get you down- you know way more than they do about your girl. Than in itself can be very frustrating. I’ve found being very stubborn and overly gracious at the same time (even if I have to pretend) usually gets me the labs and referrals I want
Thank you again for sharing your blog, it is so beautiful and inspiring and full of hope and love! I really needed some inspiration today!
Becky