weeks our oldest daughter turns 10. That means in 13 weeks Sonzee should be
turning 5. It’s a birthday I have never prepared for, a day I wasn’t sure would
ever come, a year I told myself we might not get to experience with her. As it
creeps close I am torn between potential excitement at all that turning 5
represents and fear that letting my mental protective guard down will only
prove to be catastrophic should my worst fears become our reality.
Sonzee was diagnosed with CDKL5 when she was only 8 weeks old I immediately
joined the CDKL5 parent support page. The first 10 months was filled with so
many infant, toddler, and less than double-digit aged deaths that it shook me
to my core. Whenever I have been asked about Sonzee’s prognosis and if there
was an “age limit” I would answer, “it is unknown, there seem to be benchmarks
that you can semi sigh of relief if the kiddos pass them, but I honestly have
told myself 5”.
a month of celebrating Sonzee’s 4th birthday I had a dream, that I had finally
allowed myself to plan for her 5th birthday, I went on Etsy and purchased one
of those birthday shirts that had the number 5 and of course had it
personalized. Then she passed. I never have been able to tell if that dream was
a premonition or just my anxiety but we have watched her decline tremendously
since summer and I honestly don’t know where her little body stands. I
don't know where my mind stands.
each day passes and February 11 comes closer I am internally torn. I want to
plan for her birthday celebration, I want to look forward to her
preschool/kindergarten transition, I want to know with certainty that 2020 will
bring me a 5-year-old, but like with so many things over the last 4.5 years I’m
cautiously optimistic, but preparing for the worst. My sister
semi joked that I should just avoid buying her a shirt on Etsy, if only that
could dictate her fate and if only I could allow myself to plan. But
instead, I hesitantly look towards the next few months with hope yet
filled with this indescribable weight of something lurking in the distance that
is completely out of my control.