Monday, July 5, 2021

74 weeks

Dear Sonzee, 

Hi again! Another Monday about to be in the books.  It is funny when people ask me about the length of time it has been since you died, or say in a question form, "oh, it's been a year and a half or so?" I reply to the answer in weeks and mention that's how I count the time.  I do wonder if at some point I will round off to the nearest month, start to include the word year, or answer differently, but for now, there is some comfort in the weekly count.  Maybe it is because it is a big enough number to communicate how long it has been, but small enough that it feels like it hasn't been so long.  Counting in weeks also requires a second or two of time if someone wants to do the real math of how much time has really gone by.  People know it is more than a year, but it still falls within the realm of it being not long ago.  It is all a mind game at this point, so I really have no good answer to the why.

Meena and Noam have been in camp for a week now.  They both seem to be having a good time.  Meena is now in G3 and Noam in the Camp House.  Meena was once in his room, so it makes me smile that he is following in her path.  I will always wish we could have found a summer camp for you.  Nothing ever panned out, and sometimes it makes me angry that no camp had the skill sets to take you, but I am thankful you and I got to shop until we dropped and spend our time hanging out.  I think back to the camp who told us that you were too complex, but maybe next year. I wonder what they expected to change in a year as if some miracle was going to occur that would remove your seizures and make you walk. I mean, that supposedly is the hope that many of the CDKL5 community pray for but as a camp, I think that was a little bit off the mark as words of rejection.  The truth is, we probably weren't even going to send you unless we buttered up Nurse Paige to spend the summer with us, but I wanted to be the one to reject them.  And also, we never got to see the next year, so there is the really angry part of me that wants to call them up and tell them it was their fault that you never got to experience a camp setting and now you never will.  The small bit of rationale ema that remains knows not to be mad at them because if they couldn't care for you I am grateful they were able to admit it.

Laeya and Tzvi appear to be having a great time.  Your brother has a knack for avoiding as many pictures as possible.  Aba and I have developed some mad skills being able to find him in the background regardless of his attempts.  He also hasn't sent us any messages complaining, which we all know he would if he needed to.  Your sister is all smiles, all the time, and I am just so happy for her and this experience.  I LOVE that she is having such a great time with her summer friends.  In a pre-covid world, we would be visiting them in a week, but due to the closed-off campus, we are not going to be able to.  After their 4th corona test, the camp announced last week they are 100% corona free so they removed their mask mandates while around other bunks and are back to a more "normal" camp experience. That makes me even happier for their experience.  

Uncle and Hay-Hay came to spend July 4th with us.  Remember when Uncle would sing your beat-bo and bow-wow songs and when he would lay on the floor next to you?  We instead introduced him to the chicken nugget and chicken wing songs, he will be sure to thank us when those pop into his head during a work meeting.  It was a semi-tough day yesterday, so naturally, besides Meena and Noam wearing some red, white, and blue, there was no matching outfitting going on or anything.  Facebook memories made me smile but also broke my heart.  I hope you matched your friends with outfits and wore a cute bow or headband!

Anyway my love.  Missing you like crazy!

Until next time.


The Mighty Contributor

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