Once I find myself at the bottom of the dark holes CDKL5 places in front of me, it is really challenging for me to pull myself up and out. It is almost too easy to just keep falling further and losing all of my ability to see the light from above. Every day that Sonzee seizes, whimpers in pain, is unable to communicate her wants and needs is another day I feel suffocated and a failure as her mother. Then there are these fleeting moments where I am able to see that she really is truly content with the life she has been given and that she really doesn't know any differently and I realize that I should not be discouraged.
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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