Dear Sonzee,
It happened. I anticipated it would happen, but I didn't realize how soon it would occur. Today, is April 5, 2022. Today is 2 years 2 months and 2 days since you died. Today is the first day I realized that the 3rd already happened. This was the first month in 2 years that the 3rd of the month was another day. In fact, it was actually Elle's birthday. A date that used to stand alone, but for 2 of those years I am pretty sure I didn't think of the day as hers anymore. It was a day that meant another significant amount of time had passed without you here. While that is still the truth, this month was the first time that it wasn't the only truth.
There is still a lump in my throat when it comes to thinking about you not being here. There are still many moments that catch me off guard and bring me to tears in front of crowds of people. There is still this huge empty space in my heart. There is are still moments when I can't breathe thinking about you being gone for as much time as you have been and knowing that there will be such a significant amount of time ahead. There is still so much pain. There is still so much anger and frustration over your life and death. There is still panic that all of this will never end. But, for the first time in 2 years, there is also a tiny beam of sunlight that is peaking through showing me that it is true, there is a way to merge the before, during, and after and life does actually form a new normal that isn't horrible.
After 2 years I am actually starting to learn how to balance our life with your death (I can't lie, it isn't without help). It sometimes feels impossible, but at the same time, it sometimes seems like it was so easy. As I think back to how I spent the monthaversary to the day of your death compared to now, I can only compare it to how we used to celebrate your seizure-free days at the beginning of your life. In the beginning, each seizure-free moment was honored, each hour that went by was a celebration, but the period always ended, the chalkboard was always erased, and the next period of time would start all over again. I even went through a phase where I considered just celebrating your seizures themselves because they happened more often than not.
When you first died I couldn't leave the cemetery for hours. I sat getting burnt and eventually Valley Fever from all of the dust that would blow. Each month I painted you a rock to mark the date. They were always completed in advance and I made a point to make going to the cemetery part of my day at whatever cost. I was so afraid of going to NY in the summer of 2021 because I didn't know how I would handle not seeing you every day, but it turns out, I survived. After I came back going to see your grave was worse than not. I would still decorate rocks and have aba bring them to you, but the intense feeling that drew me to your grave initially started to dissipate. I would still give a nod to the significant days that would pass, but there came a shift where I knew I didn't need to go to the cemetery for you to know I was thinking about you 24/7. The reality of you not being there started to feel true, and having to see your name on a stone wasn't something I needed to put myself through over bereaved mom guilt.
After 2 years 2 months and 2 days, I feel like I am starting a new part of this journey. I won't say it is acceptance because I struggle with that word and your life all the time. To accept it in my mind means it is okay, and nothing about you having CDKL5 and dying before you turned 5 is ok. But I am at a place where I can accept that our lives without you here physically are going on, but spiritually you really are still here, always.
So happy 2 years 2 months and 2 days of freedom baby girl!!! I hope one day to see you in my dreams.
Until next time.
Love always,
Ema
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