by Tess MacMillan
I watch her…making sure that she uses the manners that we’ve been working on.
I watch her…making sure that she waits her turn and that she shares her toys.
I watch her…making sure that her lips don’t turn blue.
I watch her…making sure that the other parents aren’t staring at her and waiting for them, too, so that I can give them a dirty look.
I watch her…making sure that none of the other children try to pull on her tracheostomy. As they wonder what exactly is that thing in her neck.
I watch her and I compare her to the other children. Are her words clear enough? Are her gross motor skills where they should be?
I watch her and I plan for an emergency. What are the steps I would take if her trach came out, if she developed a plug, if she passed out? The list seems to go on.
I watch her so intently. I learn her every move. I can tell she is getting sick by the look in her eyes, generally a day before she actually presents with any symptoms. I breathe with her hoping that my breath will infuse into her body so that she continues to breathe on her own. Even after I hook her up to her ventilator, I hope that today will be the day that she starts to breathe on her own.
I have been watching her ever since the day she was born and admitted into the NICU, then diagnosed at the age of five weeks with an autonomic disorder called Central Congenital Hypoventilation Syndrome. Trying to learn from her what she can do, not what the doctors tell us that she can’t do.
I watch her…and I am amazed that I have been gifted this most amazing daughter.
I watch her through my bleary tired eyes and I am so thankful to be her mom.