Well, it is 1:30am, and I can't sleep. I cannot get over the video I saw of Hope's heart. I'm trying to grasp that she actually has an aneurysm attached to her heart. I can't even spell the word; in fact, I have to do spell check every time I try to type it. I hate the word. What in the world do I do with that word? Aneurysm. Little Hope doesn't show one outward sign of a heart condition. She has just as much energy as any other child her age. If I hadn't seen the video with my own eyes, I swear I wouldn't have believed it. I've got to deal with the word.....aneurysm.....for Hope.
Someone told me the other day that I should feel happy....maybe the word was blessed....that I have had Hopey in my life for 4 years. Afterall, doctors had said she might not live long after birth. Should I feel that way? If it were a pair of shoes that had lasted four years, I could be thankful for that. But my daughter?
Lydia asked me today, as we were putting the final touches of paint on Hope's Love Shack: "Mom, why would God want Hope to have to go through an open heart surgery again?" How many times do you think the kids will ask that question in the next 29 days? I just said: "I don't know". Then, while she was still painting, I looked over at her.....long dark hair pulled back, hat plopped on her head, long skinny legs tucked underneath her, tears streaming down her face. She saw me looking toward her, and all I could say was: "I know". Then we continued painting together....for Hope.
This evening, Hope and I again sat at the piano. This time her big sisters were dancing around the room acting nutty. I banged around some upbeat tunes on the piano (I'm sure I sounded good from Hope's perspective, but that is about as far as I'd go). Hope couldn't stand it. The faster the tempo, the more excited she became. Before long, she had climbed up in my lap, put her hands on top of mine, and was banging away at the keys with me.....making a joyful noise to the Lord. And I do mean "noise". After my hands became so tired I could hardly use them, I picked Hope up from the piano, and we joined her sisters dancing around the room and began to sing a jazzed up version of "This Little Light of Mine". We screamed the words and danced around. Hope turned in circles, smile beaming, holding up her little finger (her little light). Pure Joy.
I made it through day 1 of our journey with Hope....no regrets. She was the center of all of our attention and seemed to enjoy every moment of it. I carried her as we ended our day marching around our home tonight. We held our hands high. We didn't say anything. We just marched.....for Hope.