The hardest realization of Lamp's condition was when we were told that she doesn't really have any hands. I know I've been vague on the details, so there it is. She is missing her left arm except for a little stump at the top and her other arm is significantly shortened with a small hand-like appendage attached. There is no thumb and the fingers she does have are all fused together. When I mentioned that she'll be fitted with a prosthetic limb in a few months, it will be for her left arm.
Almost everything I love to do, I do with my hands. Paint, sew, play guitar, write, hold my husband's hand....hold my babies. And even a lot of things I don't like to do require the use of my hands...doing the dishes, folding laundry, vacuuming. And then there are the millions of little things I don't even think about that I use my hands for...washing my hair, driving, waving, putting in my contacts, drawing the curtains, eating cereal, grabbing the keys, throwing a rock, picking a flower...the list is endless. I can't imagine a life without my hands. I'm sure most of us can't. Yet here I am, a mother to a little girl without hands. It's a little mind-boggling to tell the truth. Admittedly my first concerns were selfishly for myself... How long would I be feeding her, dressing her, combing her hair and bathing her? Now my concerns have appropriately shifted to my little girl...How will she learn to eat or dress herself? How will she play? (Deep Breath). That one hit me kind of hard. Children play with their hands. Especially at first. When babies are first discovering their world, it's with their hands. I vividly remember when Beanie first started reaching out for the toys dangling above her while laying on the play mat. It seemed like one week all she could do was look, then suddenly she started reaching for the toys. Because she could. Because her hands were just there and it was the obvious and natural thing do to do. It wasn't s a process I analyzed because I didn't think twice about the fact that her hands made it possible to play...but yet they did. And I just wonder...will Lamp reach for toys? Will she know that's even an option? (And her feet aren't a great option either fyi.)
It's strange how your perspective morphs almost overnight. Things that you were never sensitive about suddenly give you pause. Not too long ago Beanie came home from nursery on Sunday and her lesson that day had been I'm thankful for my hands. Now I'm certainly not upset that she had that lesson and she should be thankful for her hands, but I couldn't help but think about what if Lamp was in that class? I know they would have changed it for her, so I'm not really worried... but there was still a strangeness in thinking about the ordinariness of such a simple lesson, but how it doesn't apply to our little girl. Or in one of my baby books, the author talks about swaddling babies until they're 4 months of age. She then suggests you stop swaddling their arms so that their hands are free in case they want to suck on a thumb for self soothing. And I sorta hoped the next sentence would read Of course if you happen to have a child who doesn't have hands, please disregard this advice. I know the world can't account for every person who has out-of-the-ordinary circumstances, but there's a part of me that wants recognition for our daughter's life and situation. And I don't know why... I understand the absurdity of it, but at the same time perhaps it's this lack of acknowledgement, that tells me just how unusual her body is and just how difficult this world might be for someone with no hands to maneuver through it.
I was going to try and wrap this post up nicely with some sort of positive thought...but not today. My daughter doesn't have hands and frankly that's just hard.