I remember when I was a kid, back to school day was always a dreadful day which meant the end of the carefree summer days. No more playing outside until it was dark or staying up late. It meant getting up early and doing homework. For some odd reason, maybe it’s Julianne’s influence on them, but the kids actually have been looking forward to going back to school, which I guess is a good thing. In Nathaniel’s case, he’s super excited since he’s starting kindergarten, so I’ll give him a pass this year. (Of course, it’s in the back of my mind that Isabella was diagnosed two months after she started kindergarten….)
So in recent years, back to school day has been a pretty exciting day in the Icatar household. But this year, the day will be bittersweet. Although Nathaniel’s enthusiasm and excitement over riding the bus for the first time will be unmatched, Isabella will not be able to join him or Annalise in going to school.
Isabella has been assigned a teacher, but she will probably never spend another day at school. Oh she may get a visit to the classroom for a special day or two, but she won’t get to participate in class or socialize with her friends.
I was looking at pictures from the previous years’ back to schools, and just seeing the dramatic decline from last year is shocking. Where last year Isabella was able to walk and talk (albeit with a little difficulty), this year Isabella can’t move any part of her body. Isabella can also no longer eat on her own, so all of her nutrition is pushed through a tube that goes in her nose and into her stomach. We haven’t heard her speak in months or smile or laugh in weeks. Her only form of communication now is she will open her eyes a little wider to answer “yes” to a question, and even in recent days, sometimes she doesn’t answer. At times, she still struggles to breathe, so we need to constantly reposition her and swab out the mucous in her mouth to make sure her airways are optimally cleared.
Yeah, this Fall is a lot different than the previous years.
Here are a couple pictures from some of the back to school days from better times.