April 16...we meet again. 3 years ago, today I was handed this piece of paper. You were electronically signed 5 days ago, but I was blissfully unaware.
Oh, how I pray that the chain of events leading up to that moment never had to happen. I wish time could go back to the exact moment that the CDKL5 gene was forming in Sonya's body and do something differently. If only we knew what or if there was something different that could have been done during that one split second. I still often wonder why she was the chosen statistic and I am still unable to accept this is part of her life or our life, yet there is still nothing that we can do.
Today my heart is heavy, and it hurts. I cannot officially say it hurts more than it did 3 years ago, but I can certainly say it is different. 3 years ago, my heart hurt because there was a reason Sonya was experiencing seizures and she never would "outgrow" them. 3 years ago, my heart hurt because we were told our 8-week-old baby girl might not develop in a typical fashion. We were filled with fear and doubts over the trajectory she would travel. 3 years ago, my heart broke as I watched and heard Sam's break. 3 years ago, our hearts broke because we felt like we were at the bottom of the barrel.
Today my heart hurts because 3 years have passed, and we watch our Sonzee bear seize multiple times a day. We give her medications that help to an extent, but will never take away her pains, struggles, or seizures. My heart hurts today because I have watched Sonzee try so hard to hold up her head, put weight on her legs, and try to sit, but her body still has its limitations. My heart still hurts over the unknown trajectory of her path and the doubts and fears still present every day. My heart hurts because I am more aware of what a missing CDKL5 actually means.
Over the past 3 years I have watched so many fellow CDKL5 children suffer and lose their lives and I know how real and likely this scenario is likely to become. The past 3 years have taught me that while the selfish mom in me wants Sonzee here with me forever, the mom who has been present and watched her suffer for the past 3 years begs she won't have to continue to endure the absolutely horrific trials she has had to every moment of her life for so much longer.
Over the past 3 years I have learned there is not much good that comes with a CDKL5 diagnosis, but good memories, great moments, and amazing friendships can still be made. There will never be a moment that CDKL5 will ever be far from my mind. The impact of this string of characters has been monumental. There is so much I have learned over the past 3 years and so many changes that have been made. While I wish with every fiber of my being the events that led up to this day 3 years ago never occurred and we were not the ones who had to learn all the intricacies of living a life with a child who is missing CDKL5 protein, that was not the case and we were...so here is to putting one foot in front of the other, waterproof mascara, a few runs to Starbucks and embracing Diagnosis Day.
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