First Week

Here it is almost the end of the first week of school/work and we haven’t seen the sun once. There are leaks in our stockroom, coatroom, bathroom, and kitchen at work. Another freezer is broken, (we lost one last year), and we started with barely enough food to serve a limited variety at all our stations and vending machines. One of our ladies called out today because of flooding, and one is not feeling well with an upper respiratory infection. We have classes meeting in the lunchroom because their classrooms are flooded, slightly impeding some of our preparations and clean up. It’s been crazy and intense so far, and it hasn’t been more than a few days since we started. In spite of all that, we are a cheerful group of women. Everyone is pitching in and helping each other as time permits, and I’m sure that anyone in the general area can hear the laughter and chatter.




Hillary seems to have gotten right back into the swing in spite of looking like a “thundercloud” the first day back. Seriously I took “first day of school” pictures that morning and she is obviously not pleased! Her regular aide, or “school Mom” as I think of her, is there to make sure her day goes smoothly. In spite of a couple of transportation issues which had me making some phone calls before work yesterday, I think the first week has gone well.



It’s very likely that by Friday night I’ll be so exhausted that I’ll fall into bed early, but that’s ok. I’ll get into the swing of these early, hectic days in no time. And perhaps the sun will come out this weekend.

She Rides the Bike

At night while she sleeps she rides in her dreams. Her friends and family cheer her on as the scenery slips by in a blur. She feels so free. Pedaling, pedaling looking around, taking it all in. Occasionally she stops to catch her breath, to accept compliments, to have her picture taken but then she is off again--pedaling, pedaling……….




I imagine this is what my daughter, who has Aicardi Syndrome, dreams about as she sleeps peacefully snuggled into her bed. Weekdays start too early for her comfort, as is the case with most teenagers. Once up, she’s happy to be off to school. She’s well known in the school, and sought after as a companion. She enjoys learning, and loves the noisiness of gym class, and the halls during the change of classes. Assemblies and field trips are a special treat. She’s competitive and likes to win. Ensconced in her wheelchair she goes through her day. But a couple of days a week, she gets to ride the adapted bike during physical therapy. It’s hard work for her, but she loves it. The freedom of propelling herself around the halls of the school must surely be a relief. She goes slowly to be sure, and needs help to keep her hands on the handlebars. Occasionally she needs a push to get started but makes a valiant effort to keep going, looking around the whole time. In warmer weather she goes outside for a ride. How different everything looks from the seat of the bike! Even the breeze feels different, for instead of being only on her front and the back of her neck, it wraps around her torso and legs and feels more refreshing. As she goes around the school, those who see her call out her name and cheer her on. She knows she’s accepted and valued as part of the community. At the end of the day she is tired, but happy.



My daughter cannot tell me how she feels with words, but I know by the look in her eyes and the expression on her face. I don’t know for sure what she dreams about. I like to think that in her dreams she rides the bike…….