She's our dance

She wasn't getting enough oxygen to her brain we were told. Her brain was swelling. We can't get the seizures to stop. If she lives, she will have severe brain damage. Can you imagine being 23 years old and being told your very first baby might not live? I didn't even know what severe brain damage would bring with it. We were given a Polaroid picture of her and she was taken to Holden Neonatal Intensive Care Unit. She looked the picture of health. They didn't know what they were talking about. There was nothing wrong with her. We'd look for signs of anything that resembled a baby that wasn't broken. A yawn. A stretch. She came home eight weeks later. We had the highest of hopes that all was well. She cried a lot but so do most newborns. She had trouble eating but with different bottles, nipples and a butt load of frustration she learned how to get the formula. She smiled. See, I told you nothing was wrong with her. She got her two bottom teeth at six months. She's just a little behind we thought. I couldn't begin to tell you when it hit me that all wasn't fine. Maybe it was her first little wheelchair that made me cry and admit it was true. Maybe it was when my nephew was born five months later and he held his head up, rolled over, crawled and Betsy was doing none of those things. But she smiled. She was unbelievably cute. Lots of brown curly hair and always dressed in something pink. My sister called her the pink peanut. She was a sweetie and I was pissed. So angry at people with their stupid prayer chains that did nothing to help her. People who knew people who knew people that had the same exact thing happen with their baby but were fine now. I hated people with normal babies. I hated everybody and everything. Leave me alone. Shut up with your offers of hope and sympathy. This is what it is. She will never talk. She will never walk. She's not going to do any of that stuff. She will go through surgeries she shouldn't have to. She'll have pain she should never have to suffer. It's like I said, "it is what it is." As awful as this all sounds, hopeless to some, tragedy to others it's okay. When did that happen? When did all of this become okay? It took years. Seeing kids ride their bicycles, going to birthday parties, spending the night with friends. How often did I think of her actual age and not think of what she should be doing. Too many times. The years passed by and we went through all the ups and downs with her. You might feel sorry for her, sorry for us. Don't bother. We are the lucky ones. We weren't chosen either. Nobody looked down from heaven and said, "these people are special and she will be safe with them." Pffft. Come on. What about the other kids like her that got rotten shitty parents. Were they chosen to suffer? I can't answer that but this is how Betsy came to us. There's an assembly line in heaven where we are put together, cell by cell, organ by organ. On Betsy's "birth" day she was going past God. It's the last stop before we are born. He puts in the brain which holds our soul. Just as he was about to put in Betsy's brain an angel called out, "God, heads up." He turned and she pretended to throw a football at him. At that very moment Betsy passed by. He left it out. Everyone up there knew it happened but who wanted to be the one to tell God he f'd up. When someone finally did get up the nerve to tell him he said, "My bad. I'll see what I can do." He did what he could and we'd have to work with what we got. Thanks God, we'll take it from here. She makes us laugh. She is funny in ways you might not see. She likes to shop. She loves Mister Roger's and will let you know if you try to change the channel. She knows so many secrets. She knows my true feelings about you. We say if she ever starts talking all hell will break loose. She loves her sisters and they love her. She is Dad's girl. You should see her face when she hears the white Dodge truck come over the hill. She and Grandpa share wheelchair stories. She has special friends. She has Marybeth. Marybeth is a nurse from school who loves to have her around. She gets to spend the night at her house. Our bonuses are good parking spaces and we get sent to the front of the line at Disney World. So it's not all bad. There's a song that Garth Brooks sings. It's called "The Dance". When I first heard it I turned to Robert and said, "That's her song. That's our song." ... and now, I'm glad I didn't know the way it all would end, the way it all would go. Our lives are better left to chance. I could have missed the pain, but I'd of had to miss the dance.