Beep. Beep. Beep. Penelope’s feeding pump alerts me to the fact that her feed is done. It is just before 9pm. I turn on the hall light and slip into her room and turn off the pump. As I disconnect her and flush her tube, I gaze upon her peaceful, sleeping face, and I’m struck by the thought, How did we get here? I don’t want this. The sadness hits me, and it’s so powerful that I can barely breathe. I shouldn’t be cleaning out enteral feeding equipment, I should be cleaning out bottles and plastic baby dishes, stained with vegetable puree. I shouldn’t be adjusting feeding rates and volumes to find an intake that she can tolerate, I should be experimenting with different flavours and textures of baby food to discover her likes and dislikes. And while Penelope is taking some puree and rice cereal, she’s recently had a bit of a setback in that area, and she gets most of her calories from the feeding tube.
I shouldn’t be taking her to doctor’s appointments all over the city every week, I should be taking her to Mom and Tot swim classes and sing-alongs. I should be baby-proofing the house, moving all small and delicate items out of the reach of a baby who is starting to crawl and get into everything she can. Instead, I am doing exercises prescribed by an occupational therapist, hoping that today will be the day that she will roll over for the first time. I shouldn’t be covering her hands with socks to prevent her from pulling out her NG tube, I should be putting toys in her hand and watching her explore and discover the world.
As these thoughts fill my head, I can feel that familiar lump in my throat, and the tears that threaten to fall once again, and I think, Enough. I cannot keep dwelling on the shoulds. I need to be happy and accepting of what our life is- that is what Penelope needs, and it is what I need, too.
And so, I’m going to think about the way her face lights up with a smile when I walk into her room in the morning. I’m going to listen to her cooing happily, and revel in that beautiful sound. I’m going to watch her as she stares at her big sister, completely enthralled with everything Charlotte does, and I’m going to enjoy seeing the strong sisterly bond that is already forming.
I’m going to cuddle her, and sigh with pleasure at the way she just curls into me, much like a newborn baby does. I’m going to cover her with kisses and tickle her toes and sing to her and play Pat-a-Cake and I will watch the happiness the fills her eyes as I do so. I’m going to enjoy her and love her for who she is: a wonderful, beautiful, sweet, bright baby. And I’m going to stop thinking about the shoulds.
Well, I’m going to try. Let’s face it, I’m not perfect, and I know there will be days when the shoulds start to creep in. But I’m going to be a lot more vigilant at pushing them out.