It's been 11 days since I last officially parented Sonzee. The numbness of it all is slowly fading, the auto-shutoff mechanism that my brain so kindly installed is beginning to malfunction, and I am having more difficulty figuring this whole portion of the journey out without her. Yet at the same time whether she is physically present or not, the whole mothering component apparently doesn't go away, it just changes. Instead of managing her medications, calling doctor's offices and insurance companies, making sure her supplies are arriving and keeping on top of nursing and the billions of other items that I took care of for the previous almost 5 years of her life, my mothering has turned into making sure the pinwheel at her grave points the right direction to spin in the wind, organizing the rocks around her plaque and planning the perfect headstone and accompaniments for her plot.
I honestly never thought about what parenting her would look like after she was no longer here. I didn't even know it was a thing to consider. I didn't consider that I would need to find a way to continue being her mom, I didn't consider that I would begin to fear that one day there might not be anything left for me to do for her. While I did wonder who would take care of her, who would make sure she was looked after, who would play the role of her mom, and who would hold her hand while she crossed the street, I reassured myself that she would not require her medication, physical assistance, or most probably even require supervision. However, no matter what I tell myself, the innate mothering in me is having some difficulty accepting those facts.
I was only four years 11 months and 23 days into my special needs mom role. I was finally feeling pretty confident in my ability to mother her. I was finally feeling that "I got this" attitude because I did. Looking back I remember those first days of the NICU, those first days of constant doubt, those first days of seizures, those first days after her CDKL5 diagnosis, those first days after every single missed milestone, and those first days after every answer the doctors' gave me didn't quite add up and I was left with doubt. While I never fully accepted that she was meant to suffer, or that she had a CDKL5 diagnosis, I eventually accepted that my lack of acceptance was ok. I eventually accepted that I didn't have to agree with the story she was sent here to tell, it wasn't my place. So I know eventually I will accept that I won't accept not mothering her in the same physical manner I will my other kids, but for now, I will give myself another 4 years 11 months and 23 days to even consider it.