Wednesday, September 9, 2020

31 weeks 2 days

Dear Sonze, 

It's been less than a week since I last wrote to you, but I didn't want the week to slip by.  It's funny, even though it is never that long between my letters to you, I find my mind fills with thousands of thoughts I have to sort through that are all related to you.  This week one of your friends is having a challenging time.  It seems whenever this has happened since you have been gone my brain and my heart have such a difficult time.  I can't seem to figure out how it makes me feel or what I should be feeling.  I can't figure out what I am thinking, I can't make any sense of any of it and I don't even know how to try and start to.  Then it starts to feel like every CDKL5 sibling of yours is having a rough time and both my mind and heart go into shutdown mode.  It becomes too much.

The further into this journey of navigating life without you, the more obvious it becomes that time is not going to change any of this.  It is just going to be something that passes by and something that makes things more confusing.  Supposedly the benefit to time is that I will learn to adjust in terms of compartmentalizing or simply figuring out various ways to live with the grief, whatever that means?!  I am still waiting for someone further on this journey to tell me that pain stops, that the overall hole all throughout me will become filled, and that the challenges of life without you will disappear.  (sidenote: I probably wouldn't believe them if they said those things anyway, but I will wait)

Someone shared with me a Facebook post about family pictures from their friend who has sadly also lost a child.  I wanted to just post it myself and say "this".  I was hoping this person was behind me on the journey so I could maybe hope that the fact that our feelings are exactly the same wouldn't make me feel slightly defeated.  Sadly for me, this mom is further along, so while it feels reassuring to know my feelings are similar to others in the same position, it wasn't uplifting to know that the feelings I have most likely won't go away.

This week I mentioned to one of your friend's mom's that I have zero knowledge of 5-year-old Sonzee seizures.  The statement struck me after I said it.  Firstly, how was it that you didn't even live 5 years when at times it felt so long?  How is it that I gained so much knowledge in just 4 years 11 months and 22 days?  How is it that life goes on for everyone your age and you will forever remain "8 days shy of 5"? How is it I still have so many tears?

Despite it all, I still wouldn't take you back to have you seize "just" one second more or to have to be hooked up to a plethora of tubes or to have to take mega doses of multiple medications or to be limited by and in your body.  Your body is where it needs to be, it's just indescribably painful that that place isn't with your siblings, aba, or myself.  We love and miss you beyond words.  Maybe we can meet in the space between?  

Love always, 
Ema

PS: It is supposed to be 33 tomorrow with a high of 58 and Ema does not have her puffy jacket everyone makes fun of her for wearing in the 70s so if you could be gentle with your breezes that would be much appreciated.

The Mighty Contributor

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