“Walking”

adjusting, she really likes it. While in the stander, she plays with the xylophone, hits drums, looks at flash cards, plays games on her itouch and lot of other things we play when she is flat, but in an upright position — well, it's a whole new world.

Today, she was very curious about what else was in the therapy unit. We use a private room (that has been scrubbed down) first thing Monday morning before anyone else has been in there to help minimize our germ exposure. But the door is open to see and hear the other children. Today Gwendolyn kept looking over to check out what fun was being had by the others. (She had previously never really noticed.) After seeing this cute curiosity and because Gwendolyn was tolerating being upright so well, her therapist suggested we go see the little girl on the other side of the doorway. We wheeled Gwendolyn out of the room and I realized she had never done that before — stood, faced completely forward and moved directly toward someone. Her stroller faces us so we can see to suction her and although we hold her upright and walk her around, unless I walk backwards she is never completely forward, let alone standing. So out the door we “walked”. It took three of us: the therapist guiding the stander, Bill holding the BiPAP, and me making sure her head was supported, but out we went. We said lots of hellos, waved vigorously at the little girl, visited other therapists, and kept cruising. And Gwendolyn was taking it all in — like a sponge! She was absolutely tuckered afterward, quickly falling asleep on our short drive home.

Then a funny problem arose in the afternoon. Miss Independent demanded to be carried around, facing forward, as upright as she can be in my arms. I tried to put her on the kitchen counter so we could dance and put the dishes away together – she usually likes this. Nope. Not today. Today: “Mommy must hold me so I can really help with the dishes.” She did not want to rest her head on my shoulder, thus freeing up an arm. She did not want to be in her stroller to sit up. She wanted to be up, up, up — as straight as can be. The problem is Mom needs extra arms.

In one moment I found this hilarious. I adore my little girl's spunky attitude and certainty of what she wants. But in another I felt the weight of knowing Gwendolyn is now wanting to do things that she may not be able to do. I know we will find a way to modify things and make experiences happen for her. But sometimes a little girl just wants to put the bowls away all by herself.