117 weeks

Dear Sonzee, 

Sometimes the weeks fly by so quickly, and other times I feel like it couldn't have just been one week. Today marks the third first Monday of May you aren't here.  I am not quite sure how it is already May.  I am not quite sure how you have missed so many.  I am just not quite grasping your absence this week.

Last week was busy getting back into the grove after spending 12 days in Florida.  The house has come a long way in a week.  It is a good thing since we are officially out of this apartment living in a month from tomorrow.  Ironically, I just realized it will be the 3rd of June.  I find it amazing that you really do orchestrate everything.

I finally went to see your home yesterday with Meena and Noam.  I am sure you were aware because of all the wind. At one point Noam happily and casually said "hi Sonzee".  I wish I had caught it on camera.  We painted you some well-overdue rocks.  We reglossed a lot of the ones sitting in the sun.  It is still so hard to see your name literally etched in stone.  They hired some new employees at the cemetery.  There are a lot of new headstones, but your space looked the same. You have some amazing rocks, there is one special red rhinestone rock with a sweet message and I love seeing it sparkle in the sunlight. 

Last week on Thursday I was part of a 2-hour IEP.  It was a rather typical IEP except not everyone is privy enough to know about you, and the home SLP and OT of this student attended and were explaining the complexities of the child and were basically insinuated he was the first kiddo who had the types of needs he has.  Firstly, the beauty of FBC is that it is a school that has so many medical complex kiddos.  Secondly, you were more medically complex than he is, and while I don't know everything, I can promise, I know more about this child than they do, because for 4 years  11 months, and 22 days I was also a parent of a similar one.  Ever since you left I have a very specific type of "grief angry", maybe we should call it "grangry". Anyway, it is basically regular normal grief and anger mixed together and on steroids.  It happens when I am completely overwhelmed with my grief and frustrated by something someone has said that they have zero clue relates to anything much less the fact that you were alive, had CDKL5 and died when you were 4.  When I am "grangry" I want to scream about you and everything that we experienced while you were alive and let people know that you existed. In this case, I would have also liked for them to know that I once used to have an FBC mom hat in addition to an FBC SLP hat, but I kept it all inside.  I was attending virtually and had to really control myself not to slam the laptop closed, multiple times.  The meeting ended, but when I am grief angry it doesn't subside as easily.  It has been 4 days and I am honestly still off-kilter and upset about it, but I suppose a good grief meltdown is on the horizon soon anyway.

There are only a few weeks left of school and a lot of travel coming our way for your sisters and myself for more bat-mitzvah's, summer is around the corner.

Anyway baby girl! I miss you lots!

Come and visit <3.

Until next time.

Love always, 

Ema