Moving forward

There are days that you experience during your life that you remember so vividly it is as if you could relive them in your mind. They are typically the best days of your life or sadly the worst, but there are those days that are not quite so simple to categorize. The ones that tug at your heart because they represent both a beginning and an end of a period, or an experience. Those moments, similar to the best and the worst also find a way to settle into your mind and sit forever in a crevice. The emotions that come with them are a blend of happy and sad, panic and calmness, a burst of tears and a deep breath, complete opposites like the crashing of a wave and then the receding water back into the ocean, an earthquake that comes lasting for less than a minute and then ends, or a breeze in the wind that slowly fades away.

I've learned over the 4 years 2 months and 4 days that grief is a constant battle of finding the balance of my inner ocean. For the most part, I do my best to keep the crashing waves subtle, but there are days on this journey when the crash is impossible to ignore. There are days when the balance feels insurmountable. Those questionable days become just as significant as the celebrations of her life and the honoring throughout and since her death. These days in a sense aren't negative, but it is difficult to call them positive. They are what others would call moving forward, and yes, in a sense that would be correct. But something that I have also learned on this journey is that when they tell you you won't move on, that you will move forward, that doesn't mean it will be easy and it doesn't mean it won't hurt like you just buried your child all over again. 

I remember the first day I had a conversation within my mind over not going to visit the cemetery for the first time after Sonzee died. I watched the clock tick by knowing as time passed so would my opportunity to sit by her grave. I knew when the clock read the time I needed to leave by to beat the gates closing that if I didn't get up and go I would miss my chance. I sat there and reminded myself that I wasn't going for her, I was going for me, and I was truly "ok" not going and the sadness was the fact that I was ready to not go. I remember the pain that swirled in my chest and the overwhelming sadness that swallowed me whole, the intense guilt that it brought along with it. I did it though, I watched the clock strike 4pm, and I was okay, life was moving forward. 

I remember the first sibling/cousin picture that happened that I "forgot" to put a "stand-in" for Sonzee. I remember reminding myself right after it happened that it meant it was okay, it was part of the process, I was moving forward. I felt panic, sadness, and tears, again with the guilt, and the realization that it was okay, life was moving forward. 

I remember the first time I stopped writing Sonzee weekly letters. Like visiting the cemetery, they too were more for me than her. I found a new way to communicate with her, I didn't need to send her a letter on a blog. The guilt settled in strongly paired with so many other emotions. But, like the other events, I was okay, life was moving forward.

In May of 2020 in the throws of COVID, 3 months after we buried our Sonzee Bear we ventured to Flagstaff, and like much of the things we have done in our marriage, we threw a random dart and did something crazy, we purchased a house in Kachina Village. That home became our Bear Pines, our home away from home, our family retreat, a place Sonzee's baby brother labeled "other home". That home was more than just a house, it was the place that held my sanity together and brought us so many insane memories. It was a place that filled a void and gave so many others a sense of peace to venture to. But, like so many experiences since our Sonzee left us, it has served its purpose. Our family as a whole is ready to move forward. There is hockey and gymnastics and adventures that remove our ability to go up north for the weekend. I know that life continues moving forward, I know that selling Bear Pines is the right thing to do, it is time, and we will be okay because life is moving forward. 

The pit in my stomach and the tears streaming down my face are not because I am sad that we are selling, it is because I know I am ready and it breaks my heart. It's how I felt when we sold 19th street, allowed the insurance company to throw away her wet furniture after the flood, and painted over her medication door. Moving forward is so hard. It is filled with tremendous guilt, questions over how she will be honored now, and fear that eventually, I will leave her completely behind. The tears, the sadness, the red eyes, and the horrid ugly crying is because moving forward is so freaking scary, and I miss her so damn much. But deep down I know, like every time before, it will be okay...because life will continue to move forward. 

2020

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.