Saturday, November 2, 2024

Lost

Dear Sonzee,

Hi baby girl. It’s been awhile since I’ve written you a letter and I don’t know if I should apologize or not? I’d say not because I haven’t felt like I needed to write to you, and let’s be honest, the letters are more for me than they are to you. But then maybe I should? Maybe I wouldn’t be in the predicament I am finding myself in had I just spent the last year sending you letters like I used to do? I guess hindsight remains 20/20 even after you’re gone.

This week I took a test to be board certified in assistive technology. The test was heavily concentrated on content meant more for a PT and OT. I have been studying for months, but I didn’t pass. I sat in booth #11 and thought it was so fitting because of you. I left after the test with a feeling of uncertainty and Aba told me to check my email because I probably passed and why wait. I didn’t. 574 is what I got and I needed a 600. I wasn’t upset though. Instead I felt lost. Why did I even take the test? What was the point? Aba had asked me will it give me a raise? Nope. He asked if it would give me a promotion? Also, nope. Why do it? I don’t know honestly because all it would do would give me an additional 3 letters added onto my already 8 letter professional signature. 

I don’t know why I took it, but now that I’m invested in the journey, I will retake it in 6 months or so again when I am able to, just because? But why? I don’t know. 

I don’t know a lot of things lately. 

We close on the sale of bear pines on Monday. My heart is broken. I know we never used it much recently, I know it served its amazing purpose after you died, but selling it makes me feel even more lost. I feel like you’re so far away. Nothing makes that better, except things. Things that were put in place to make it feel as if you were near and I feel like it’s all slipping away from me. 

Today at shul there was a speech about silver linings. While the rabbi spoke my mind fought with itself. “I am the queen of silver linings”, “I can look positively at all the crap thrown my way”, “but there is no silver lining when you are given a medically complex kid and watch that kid suffer and then watch them die- slowly- for years- and then officially over a 2 week period.” Screw silver linings. Just once, I want a person to not tell a story about a friend or a person they know who buried a kid and they looked at the silver lining and depression be gone. IT DOESNT WORK LIKE THAT! Ya you aren’t suffering, great that’s the silver lining I have. Your life nor your death saved anyone because kids are still being born with CDKL5 mutations! What silver lining is there that is actually a silver lining that makes any actual difference???? Give me one person who has buried their kid and says - “you know what; the world and our family is better off without them”. 

There is maybe some rationalization so you don’t kill yourself since one of your purposes of life have been taken away. There is maybe some attempt at the internal conflict resolution that plays out in your mind. Maybe some attempt at justification of the loss. But, a silver lining??? That is said by other people who want to try and take a horrific situation and make themselves feel better about it. That isn’t said by the mother or father of the child they birthed and buried, because no matter what story we tell ourselves over the death…it’s lies, because we spend the rest of our lives- or at least for me. 4.5 years of them, simply lost as I struggle to comprehend what stupid potential silver lining is left in understanding why I will have to honor your 5th year away from me in 3 months and 1 day and why you will “turn” 10 in a grave in 3 months and 9 days.

I wish you would come visit me already! Maybe it’s you in the rain tonight (please don’t flood our home!)

I love you little bear!

Until next time.

Love always,
Ema