Thursday, February 20, 2020

Dear Sonzee: An update

Dear Sonzee,

I should be working on something for your celebration that is in two weeks, but I just can't right now, and I am so sorry about that.  I worked on it here and there today, and honestly was much more productive with it than I have been, but I cannot bring myself to sift through more pictures right now. Instead, I put a song on repeat that I have always known would be fitting for when a day like this was bound to happen, relocated the box of tissues to within hands reach, and decided to write you a letter.

I am not sure if you received Laeya's invitation to her school event Thursday (today), she asked me if I thought you would be able to come.  I told her if you could, you would, but I wasn't sure what else you had on your schedule.  If you have a free moment between 2:55 and 3:45 AZ time, maybe you could drop by and knock her poster over or have something fall around her to let her know you popped in.

I took Auntie A with me to see you yesterday.  She did really well considering the cemetery isn't exactly her most favorite place to be, and honestly, before it became your new home it was the last place on this planet anyone would ever expect to find me.  Yet it is the only place on this earth where my heart doesn't actually hurt and I feel like I can fully breathe.  I know for a tiny fraction of my day I can find some peace and I hate when I have to leave.

Your little name plaque is becoming completely covered by all types of rocks.  I ordered a red wire basket to hold some of them so it doesn't get too cluttery over the next few months and hopefully it will be here before I go to see you later on today, if not I will bring it tomorrow.  I cannot wait for 8 months from now when you have all of the adornments up.  You will have the most perfect headstone, a yahrzeit candle area, and a beautiful bench. 

During bedtime last night Meena told aba that you were the one picking out the book to be read.  Aba chose the book he thought you had chosen, but Meena immediately corrected him and told him that was not what you chose.  She wasn't happy after that book was done though because she wanted to read her choice book since you chose the first book and aba said "one book".  Meena keeps saying you are around the house, you know we are always hesitant to trust that one, but I am starting to believe her a little bit...or maybe I just really want to.

Noam has started to ask where you are.  I tell him, "not here", and he asks "home?", and I tell him "no, she is not home", he then asks "Paige?".  I think he finally figured out you two are not the same, but it is so hard for him to understand you aren't coming home and nurse Paige isn't coming over.  To be honest, there have been a few mornings where I have to remind myself nurse Paige won't be opening the garage either. 

Tzviki scored at his tournament this past weekend.  The rink wasn't so cold, but I wore your beanie in your honor the first day anyway.  I wore the sequin red boots and received so many comments.  You probably would have loved the rink because the wheelchair seating was at the top and you would have had a great view, the wall in front was all glass too.  I didn't miss you kicking off your boots though, that would have been a pain because I know you would have sent them over the glass wall multiple times since it was only half height.

Aba and I are continuing to figure out life without you, but we are starting to realize there really is nothing to figure out.  We both feel lost, we both feel like we are missing something, and that isn't ever going to change.  No amount of time is going to fix your absence.  No amount of time is going to make this better.  It will be just how your original diagnosis of CDKL5 was for us.  Always there, never changing, something that we will just have to learn to live with no matter how difficult and painful it continues to be.

We really hope you are having a fantastic time wherever you are, and I hope you aren't being too carefree with your freedom.  Be safe and know you are extremely loved and missed.

With love always,
Ema


The Mighty Contributor

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