I thought I'd share a discussion that happens periodically when we are in the PICU. A Resident Dr. came by to observe Emily and here's how the discussion went:
Dr: Do you mind if I ask you a question?
Me: No, ask away. :)
Dr: You mentioned that you had another daughter with Spinal Muscular Atrophy (SMA), and now you have another one. Did you consider genetic testing? I'm thinking of becoming a neurologist, that is why I am interested.
Me: Sure. We understood the genetic probability of having another child with SMA, but had decided we wanted to try for another either way.
Dr: Couldn't they test in utero?
Me: Yes, but we didn't want to have the discussions about abortion that would follow, so we chose not to test. We were comitted to having a child, with or without SMA. (long story followed about Hopkins doing the wrong test when Emily was born, etc, etc)
Dr: Do you not believe in abortion b/c of religious reasons?
Me: Yes, religious and ethical beliefs. (should have expanded at this point b/c I have A LOT to say about this)
Dr: Even though her care would be so complicated?
Me: I don't believe that I should only make decisions in life that bring me convenience. If I made decisions that way then I'd be compromising my beliefs at every turn. We know we can care for Emily, so we chose the possibility of a complicated life to care for another wonderful child. Everybody's life is complicated, everybody has a choice in how they will deal with those complications.
Dr: Thank you very much! (thumbs up)
Me: You're welcome! :) Thanks for asking!
---- So, there's a little window into the life of the Lees. We are an anomoly (along with thousands of other families). We make people wonder and consider life a bit differently. Not b/c we're great, or selfless, or anything else - but b/c our life is severely out of the comfort zone that "normal" people live in. It's either a curse, or an opportunity... a blessing. I may whine and complain and kick and scream at times b/c... THIS SUCKS! These days I feel it's more of a curse (in my head anyway), but I know that it's not. It's just what we have to handle in our life. But, we believe it is the life God has allowed for us, for His good reasons. So, we press on and make it to the next day - after all, we all suffer.
Thanks - Peace <><