Today marks day 4 of CDKL5 awareness month. It is a month I have been lucky enough to honor over the 3 years of Sonzee's life. The entire month brings similar feelings to that of her diagnosis day; a mixture of gratitude for having an answer to the "why", and pain because of everything that comes with the 5 characters that don't go away when awareness month ends. Historically, I spend each day of this month trying to balance the positives and negatives that have come with this diagnosis, not wanting to highlight only the bad but trying to give the weight of these characters their due justice. The truth is while the hallmark of CDKL5 is early onset, difficult to control seizures, CDKL5 is more than just seizures.
Two years ago yesterday Sonzee was finally discharged from a 28 day hospital stay. It was a discharge we were not sure would occur, and the experience left us jolted to the core. It was during that stay that it was clear she would most likely never tolerate feeds into her stomach again, 2 years later and those thoughts are pretty much confirmed. She is still fighting the same battle and we still have yet to figure out how to help her. That sadly seems to be a recurring theme, and it weighs heavily on me as a mother. My job is to not allow her to suffer, and CDKL5 makes that nearly impossible on every level.
Sonzee is 3 years and 3.5 months old, yet our 6 month old moves circles around her, almost literally. She cannot sit, she cannot crawl, nor can she walk. I am able to say those words without tears now, and we focus on what makes her happy, but the facts still tug at my heart. I wish for her that she was able to sit, that she was able to crawl so she could get to toys or places she wants, and that she was able to functionally use her hands to request hugs when she wants. I wish for her that her voice was not locked inside her unable to communicate her basic wants and needs.
I do not need a month to remind me of everything that having a CDKL5 mutation has taken from Sonzee or our family. I live the effects every hour of every day, and when this dreaded deficiency takes her earthly vessel from us, it will continue to wreak its havoc on those of us who have fallen in love with her over the years. What this month simply does is allow me to reflect on the significance this string of characters has on Sonzee and every child impacted and share the weight so that I do not have to carry it alone.
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