Christmas is fun because you’re with family and you can just relax. This Christmas was different though, since it was the first one after the diagnosis. We were all a little zoned out and I was very aware of the gross capitalism of it all. I found myself wishing I had asked people to donate to a cause instead of for Bluetooth wireless headphones. Seems pretty selfish in retrospect. At least I can ask people to donate to irsf from now on.
Because of this perspective I found myself asking everyone what they gave for Christmas instead of the more traditional what did you get. It actually made a difference in how I felt about the whole giving season.
It’s also hard watching her cousins tear open their presents with excitement. She’s not into toys and never mastered the paper ripping. So none of the gifts she gets ever get met with anything other than apathy. We have to play with her toys for months before she even considers caring.
I’m just grateful she’s still walking and smiling amongst the bevy of other skills she continues to learn and master. We’re fortunate she’s one of the girls who can feed herself… she’s even using a fork. She’s sleeping through the night almost 12 hours per night. Knowing as little as I currently do, either she is on the mild end of the rett spectrum or her regression hasn’t happened yet. I dread the possibility of the latter.
I read a book recently and there was a quote in it “labels are for cans not for kids”. Before the diagnosis I had no doubt she would end up totally fine. Is it possible to ignore the label and still believe with blind optimism? I feel like if I do, she will amaze us. I hope I can stay as positive through this.