and a happy new year

Facebook has this year in review deal that I finally clicked on the other night. I came upon the video of Clayton escaping to Ella's crib the day before we were planning to switch them to big kid beds. It was January 4, 2013. I can't believe that was only a year ago. It feels like ages. Their little voices, their hair, their faces, they have changed so much! The crib sheets and dollies strewn across the floor, defiance in their eyes. Okay, maybe they haven't changed that much. And the next video was Mya's laugh from March. The light in her eyes and that precious giggle we do not take for granted. The fact that we caught a moment like that on video is simply priceless because so often with her we just don't know when it will come around again. In so many ways Clayton and Ella are moving forward and in some ways Mya is too, but so much of her development just keeps looping back around. She was doing something in March that we may not see in January. We may never see it again. And as hard as we fight it there may not be a thing we can do to change that. Sometimes I have a hard time putting my finger on what it is about this parenting journey that is the hardest. But watching that video makes me think it is the not knowing. We don't know how much of this next year she will be awake. We don't know how often we will see that light, how many smiles, how many laughs. We don't know what we will lose or what we will gain and how many times. We also don't know if there is a simple fix mixed in with all of these competing factors.

We are in a sleeping patch, and also sort of a puking patch but the sleeping is the current focus. I have been getting her up between 10 and 11 and bringing her into the living room where, if she ever did wake up she promptly falls back asleep. Then she is out until close to 2 when she spends an hour keeping me and the suction machine on our toes. This child does not wake up well. Anyway, focus. Tonight she was able to stay awake until after 8. So this begs the question (or it does if you open your big mouth and mention it to the nurse that is asking) is it really okay that between and 10 and 2 and starting at 8 that she is sitting amongst her family and not in her room hooked up to oxygen and forced air? Do we want our daughter in her room for most of her day? Do we want to keep her from school? Do we want to keep her siblings from activities? Do we want to send equipment with her everywhere she goes in case she falls asleep? Can we opt out of all future life defining decisions? I feel like we have handled some big ones. Isn't there some sort of quota?

So often you hear someone point to some milestone as the thing that makes it all worth it: a child that finally walks, a toddler's first I love you, the delivery of a healthy baby. But what, I always wonder, if you never met that milestone? What if your child never did walk despite all your efforts, or your kid never had a first word because they were not born healthy? Is it still worth it then? Some people move forward and some people loop around and some people step back. I have stopped trying to make it all balance out. All I know is that Mya is loved. She knows it too. Even when she is not smiling and even when she is not giggling and even if we never catch another milestone on tape, absolutely, without a doubt, I know that she knows it too. Maybe THAT makes it all worth it.