Last night, CMT reared its cruel and hideous head again.
It came out of nowhere, body aches, fever, then aspiration. The night was fitful, and we struggled to keep her comfortable. We are still trying, but the antibiotics and pain medicines haven’t made the difference, not yet.
It wasn’t supposed to be this way. She had a good week, and it was a perfect, glorious 70 degree Sunday. We colored some hair (on her Barbie head) and did some projects (flower crafts). We took a stroll in our neighborhood, and she picked me this flower.
She always does this – every single time she goes outside (and it’s not a lot), she insists on picking a flower for mommy. She tells me to put it in water and in my bedroom and “think of me.” As if I could think of anything else.
And today was supposed to be different. For weeks, she has been planning a tea party with her kindergarten class. It’s the last week of school, and Julianna hasn’t seen them in person since the fall. She had her hairstyle, dress and teacup picked out. It was supposed to be today.
Julianna reminded us of this last night. Even as she told me that it was hard to breathe, she talked about her hair and her dress, and how she had to go to the tea party and use her cup.
And we were determined to do it. To hell with safety and — whatever we’re trying to preserve. If she wants a tea party, she gets a tea party. We’d make it happen. Only we couldn’t. She took another turn in the morning – more fever, perhaps another aspiration – and even she agreed that she shouldn’t go to the tea party today.
And here we are, at home. She’s asleep, but not comfortable. We wait, we pray, we watch and we plead. Comfort, please, for our Julianna.
PS — Julianna was in rare form last night. Even though she was struggling, she was funny, decisive and spirited. She schooled me on the correct way to hold her cough assist mask and declared that I was still “in training” – but she forgave me. When she wanted ice, she said “Ice, Ice Bebe.” (Bebe is the name of her former favorite – and most scary – doll).