"Mommy, why do I have this?" That's what Seamus asked me pointing to his stomach Saturday night as I was setting up his feeding pump. It took me by surprise because he asked in such a serious way and it was the first time he seemed to know something was wrong with him. We talk about his "boo boo" in his tummy all the time but he always seemed to just accept it. We also read a book about kids with CF and he knows he is like them but of course, he doesn't understand what CF means.
On Friday, we went to Sesame Place again and he's old enough now to notice that none of the other kids have a hole in their stomach with a piece of plastic sticking out. And the other kids definitely noticed too. I was hoping we had a few years before the tough questions started. I always tell him the truth but I don't want to scare him.
Ga and Pa went with us on our trip. We stayed the night in a nice hotel which Seamus thought was just great because he got to sleep in the big comfy bed with Mommy and Daddy. Unfortunately, Pa felt too sick to go into the park so they ended up sitting in the car all day. They really wanted to spend the day with Seamus but at least we got to share two wonderful meals together.
We had a nice Father's Day. We started out at a yummy brunch where Seamus got to eat doughnuts (it's hard to find dairy free). Then we went to the cemetery to visit James' parents. Seamus has seen pictures of them but he is still confused. We told him we were going to see their grave and that they were in heaven in the sky. He thought that sounded great:
"I want to be up there too".
"No, Honey, they died and that's why they're up there."
"I want to die too."
"No, Sweetie, it's not your time yet but we will be going up in the sky when we fly in the plane to Chicago next month."
The rest of the day he kept insisting Grandma and Grandpa were in Chicago and we were going on a trip to see them.