When my oldest daughter turned three a tradition was started for her to attend the Nutcracker ballet. When our 2nd daughter turned three, she joined in the tradition. I debated for awhile what I would do when Sonzee turned three, would I take her as well? Afterall she did turn three, and that is the only rule. Would she like it? Could she see it? Would the music be too loud or the lights too bright? I had so many questions and thoughts running in my mind, but ultimately I called up the theatre and bought her a wheelchair accessible seat; Sonzee would be attending her first Nutcracker.
As I sit here, in room 8129, my heart is hurting, and for so many reasons. The majority of the rooms at PCH have their green lights on ready to welcome their new occupant. There are literally three nurses on the floor when typically there are six or seven. Sunday nights are normally my nights at home, but for a couple of reasons that didn't occur. I miss being home, I miss what I don't even know I am missing, and I miss normal.
Ultimately tonight I am a mixture of sadness and anger. I like to think that overall my attitude towards life with a medically complex child thanks to a mutation within a gene that occured during a "fluke", what should have been, routine situation, is pretty positive, upbeat, (sarcastic) and "go with the flow". For the most part I ride with the waves, take what comes our way and always try to make lemonade out of lemons. I have handled the fact that the majority of typical children milestones will not happen for Sonzee, im fact I let it go the majority of the time. I try to let it slide that Sonzee should be in preschool at the same school her siblings and cousins go to and she should be on the playground during recess with both of her cousins, because she is in between both of them gradewise. I deal with the fact that my other 4 children are acustomed to and seemingly okay with the fact that I am not there every morning before school, after they get home, or to give them a kiss goodnight. Those things are okay. They are just part of our normal. But what I am having difficulty with is the fact that within our new normal accomodations are made, plans and schedules adjusted, there is room for "life happens", and yet today has come and what should have been her first time seeing the Nutcracker will instead be spent in room 8129 for the 20th night.
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