Grace's understanding of Alpha-1 is exploding now. Her naiveness is fading, and we'll she is one smart cookie. I hope that I can help her believe that she is special because she is an Alpha, but that it doesn't limit her (within reason). This is the hard part of parenting a child with a medical condition...explaining things with kid logic and just enough without giving too much. It certainly is a balancing act. Here is another example of our conversations lately.
While driving down our alley in the minivan, Grace noticed our neighbor cutting his lawn.
"Look Mom! Emma's Daddy is cuttin' the grass. Mom, when can we make the Alpha go away?"
"Honey, we can't make it go away. It isn't like a germ. It is part of who you are, but we are taking good care of you by protecting your lungs from bad stuff."
"Why can't I go outside when Daddy is cuttin' the grass?"
"Well, the lawn mower is kind of stinky, and cutting the grass makes a lot of dust fly around in the air. That stuff isn't good for your lungs Grace."
"But I want to cut the grass when I grow up!"
"Honey, you will be able to cut the grass, but you may wear something called a respirator over your mouth and nose to keep the yucky stuff out of your lungs."
"Oh. How come Daddy can cut the grass? He has Alpha?"
"Grace, remember how I told you that Daddy and I have a different kind of Alpha-1 (we're carriers) than you."
"Uh huh. Well, Daddy can cut the grass because his Alpha-1 is different than yours. Do you know who has Alpha-1 just like you?"
"Uh huh...the Alpha friends (our local support group members)."
"Yes, and your sister, Meghan, has the same kind of Alpha-1 as you do. You can both be special Alpha Girls together. Remember that you can do all the same stuff as the rest of your friends. You just need to keep yucky stuff out of your lungs like nasty cigarette smoke and cutting-the-grass stuff."
"Oh, but I still want to cut the grass when I grow up."