I had one of those mommy moments during Sonzee's swim class this week where the world around us did not exist and we were in a dream. It was one of those great moments that caught me off guard and brought some tears to my eyes, a ridiculous smile to my face, and for a split second I forgot about her troubles. For a good half an hour I watched her in her element; not in any pain, smiling on and off, looks of content across her face, just pure happiness exuded from her as she kicked her feet, went under water, and worked on back floating. Lately I feel as if these situations are rare and I wanted time to stand still so we could be frozen in the moment for a little longer. I live for these moments, they are what make hallmark movies and P&G Olympic commercials.
The other day one of my special needs mommy friends mentioned she keeps her daughter on palliative care because it is "care-ative" medicine vs "curative" medicine, the line resonated with me immediately, but it was not until today watching Sonzee play in the water that I felt its true meaning. We will never cure Sonzee of seizures or the lack of CDKL5 protein that is present in her body, we won't ever be able to cure her GI issues or make her able to function like a typical person does in our society. We are only able to care for her in a way that shows her we get her, we understand her essence, we only want her comfortable and happy and during her swim class I felt it was her way of giving me a pat on the back and telling me "Ema, thank you, you are doing alright".
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