I'm sorry anon, but I have to disagree with you. My daughter is just three and the reason I really connected to this book was because her first few months were so very similar to Lo's.
I agree that the doctors now have a much more positive outlook on CF, but some of Lo's doctor's comments still ring very true:
"It (cf) has mystified us for decades. Each case is unique."
"The care of a cystic fibrosis patient is demanding."
"This disease is genetic . . . It's not your fault."
"The incidence of divorce among parents is extremely high."
That last comment really hit me because at our first clinic our team was kind but very straightforward with us. I appreciated their candor. I remember the social worker telling my husband and I that "CF will make a strong couple stronger, it will also make a weak couple fall apart."
Chapter two was so eerily similar to my Sami's situation. At two months, she was slowly starving, stooling all day, getting thin and pale. I researched and researched online, and like Terry, stumbled on to CF. At three months, I went into the pediatrician's office with a lime green mucous filled diaper and asked for some explanation. I already suspected CF, but was not ready to believe it.
Unfortunately, there are still babies who are born with a more severe case, and families still feel as Terry and her husband did the first year. There are so many similarities that I'm sure A LOT of us still go through. Thinking and worrying about the tremendous cost, wondering how it will affect the siblings, wondering EVERYDAY about your child's future. When infection after infection come, DESPITE all the new meds and technology, you still do feel like you are "in a vicious cycle."
Sorry, getting a little emotional remembering those first two years. . .
Maria (Sami's mom)
