A year ago I sat at my desk trying to find a way to convey my deepest rooted fears and feelings in my yearly recap without saying too much. My heart felt this impending fear that 2020 was going to be Sonzee's last year. I couldn't quite articulate my feelings without feeling like I sounded insane or as if I was premediating something not even humanly fathomable, but I can still feel the uneasy emptiness that consumed me as I wrote these words
I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come. I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to. 2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time. We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best."
Rereading those words I take a deep breath and try to swallow the lump permanently stuck in my throat. I try to use my magical powers to push the pain and heaviness that now permanently sits on my chest to the space that I am still trying to create within so I can learn how to live with it.
2020 was the year that definitely began with uncertainty. I spent the first 17 days burying the pit that sat in the bottom of my stomach. Sonzee went to her usual beginning of the month TPN appointment and we even visited with her palliative care dr and the community palliative care social worker. We had gotten to the point where Sam and I required that buffer so we wouldn't end up in an all-out brawl over the vastly differently viewed same situation we were both in. A day after her visit she had her routine GJ tube change where I received a call a classmate had been diagnosed with the flu. I shrugged, nothing we could do now. 2 days later and 18 days into 2020 Sonzee spiked a fever. Her sister's 10th birthday was now tainted with the potential of it being canceled. 3 days later, with a fluid retaining Sonzee, and a negative flu swab (done to confirm my real fears) it was evident (to me and I am fairly certain nurse Paige) CDKL5 was going to win.
2020 was the year I learned far more than I could have ever wanted, thought of, or knew was possible about watching someone die. 2020 was the year I learned that the movies aren't accurate in their depiction of death and hospice. After 5 times and 10 years of calling out birth times, 2020 was the year I called a time of death for my 4th child. It was also the year I became a mom of 4 live children and 1 child in heaven.
2020 became a year that my discussions changed from "I have a child who has special needs" to "Well, actually I have 5 children, but one of them passed away and she had special needs". It was a year I spent trying to figure out how to parent a child no longer here while trying to figure out how to keep her spirit alive and continue to parent the children still left in my care.
2020 was filled with more tears than I thought could be humanly possible to have. It was also a year with so much love and support from those in our community both near and far that that fact alone brings me an overwhelming abundance of happy tears. 2020 was also the year that I learned you can actually run out of tears, but that becomes short-lived and they will inevitably find their way back into your eyes.
2020 the world shut down for a virus that kills less than the percentage of the likelihood of having a Sonzee, and I admittedly spent a large portion of my time struggling with that fact. To escape the reality we bought a house in 2020 for ourselves in honor of Sonzee. It is a place like a cemetery in that I know her spirit is there, but there are no active memories of her presence, so it's a dual-edged sword.
There was definitely laughter and smiles throughout the year and many positive gains all because of our Sonzee bear. In 2020 Sonzee's outdoor classroom was created in her honor, as well as Sonzee's PEMU PJ closet gave out its first pairs of pajamas at Phoenix Children's Hospital. Our relationships with our close friends became even closer as we now share a closer bond due to the loss of our little girls. On the same token, because of Sonzee's death, I was able to share my expertise with a close friend of mine as she went through the same heartbreaking experience, making things come essentially full circle.
I am unsure how to celebrate the end of the last year Sonzee ever lived. I am even less sure of how to welcome a brand new year that she won't ever be part of, but one thing is for sure. While 2020 was the ending of volume 1 of Sonya's Story it is only the beginning of the amazingly beautiful legacy that one little nonverbal, immobile, and a medically complex little girl started all on her own after living just 4 years 11 months and 23 days of one hell of a roller coaster of a life.
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