Every Christmas (for the past two years, at least) I've tried to make a homemade gift for each kid. Last year I made them each a photo book. It was mostly pictures from birth to the present. Each book had a page or two devoted to a snapshot from each birthday, Christmas and Halloween of their lives. They each had pictures from the day they were born. And our trip to Disneyland two years ago. The big girls each had a page for their baptisms. Millie's was mostly a bunch of random snapshots since her milestones are so much fewer. And Matt had a few pages devoted to his medical history.
One page showed pictures of Matthew in the NICU. One page showed the ultrasound pictures the doctor gave us after two of Matt's balloon-cath procedures. And there was a page of pictures for both of Matt's surgeries.
Tonight Matt was looking at his book as I came to tuck him in. He was looking at the page of him in the NICU and said, "This page makes me sad because I was dying."
Hello, throat. Meet my stomach.
I explained to him that at that point, he was okay. He was being taken care of by great nurses and they were making sure he was going to be fine.
Then we began talking about his heart and he began to cry because he was afraid he'd need another surgery when he turns 12.
I held his hand as I explained to him that around his birthday in June we'll be getting a better picture taken of his heart so we can know better when he'll need his next surgery. It could be a couple more years, but it might be as soon as when he's seven.
With a tear in my little boy's eye, he asked me, "What will they have to do?"
That's when the ton of bricks hit me.
We've never explained to Matt exactly what is wrong with him. I've used this very blog to tell the whole world about Matt's pulmonary atresia. But it never occurred to me to tell Matt about it. Obviously he knows his heart had problems and that he's had surgery, but that's really all he's known.
So tonight I explained to him what was wrong. And how it had been fixed. And why it will need to be fixed again. I also remembered that we have a couple of videos of the balloon-caths. He wants to see them.
And then I told my little son what to expect when he has surgery. When Daddy and I will be with him, what the doctors and nurses will wear, when we'll get to see him after he wakes up.
As scary as it may seem, the conversation actually seemed to help Matt feel better. Now he knows what he's up against and what to expect.
Schoolhouse Rock was right. "Knowledge is power"!