I realize I could cut and paste anybody's first post because I am going through the same awful emotions... how could this happen? We have 7 healthy grandchildren and took for granted this time would be like the others.
My daughter, Meghann, gave birth by c-section to my grandaughter, Abby, on December 22. She had surgery for what the doctor suspected was ileal atresia but turned out to be meconium ileus which led to the suspicion of CF. Those 2 weeks between the birth and the definite diagnos were pure hell and now, 7 weeks later, I'm still this close to tears all the time. I'm a librarian so I've done all the research, am becoming an unwilling expert, and it's really hard to reconcile what the future seems to hold with this tiny, beautiful baby. My brother, bless his heart, told me to stop learning... he said find out what you need to know about nutrition this month, but don't read the chapter on death.
A big part of the problem is that I'm so far away, they are in the Los Angeles area and I am in Indiana. I did much better with keeping a lid on my emotions when I was able to visit out there for 2 weeks; maybe it's as simple as being able to actually do practical things while I was there, like prepare the applesauce and enzymes, but here all I can do is listen and ask questions.
I want to be there for my daughter, I want to just leave and set up camp in their living room. That's out of the question, of course, I have to work, we have our house here. Meg and her husband, Mike, have a fine support system in his loving family there. They are lucky to be close to the CF Center at Children's Hospital Los Angeles. And they are so good together, supporting each other and determined to do everything they can for Abby. I guess I am still in mourning for the future they should have had.
Sorry, I could fill a hundred screens with everything I'm feeling and all the questions I have, but I'll quit now. Here I am, I'm one of you.
Mary
My daughter, Meghann, gave birth by c-section to my grandaughter, Abby, on December 22. She had surgery for what the doctor suspected was ileal atresia but turned out to be meconium ileus which led to the suspicion of CF. Those 2 weeks between the birth and the definite diagnos were pure hell and now, 7 weeks later, I'm still this close to tears all the time. I'm a librarian so I've done all the research, am becoming an unwilling expert, and it's really hard to reconcile what the future seems to hold with this tiny, beautiful baby. My brother, bless his heart, told me to stop learning... he said find out what you need to know about nutrition this month, but don't read the chapter on death.
A big part of the problem is that I'm so far away, they are in the Los Angeles area and I am in Indiana. I did much better with keeping a lid on my emotions when I was able to visit out there for 2 weeks; maybe it's as simple as being able to actually do practical things while I was there, like prepare the applesauce and enzymes, but here all I can do is listen and ask questions.
I want to be there for my daughter, I want to just leave and set up camp in their living room. That's out of the question, of course, I have to work, we have our house here. Meg and her husband, Mike, have a fine support system in his loving family there. They are lucky to be close to the CF Center at Children's Hospital Los Angeles. And they are so good together, supporting each other and determined to do everything they can for Abby. I guess I am still in mourning for the future they should have had.
Sorry, I could fill a hundred screens with everything I'm feeling and all the questions I have, but I'll quit now. Here I am, I'm one of you.
Mary