Monday, August 17, 2020

28 Weeks

Dear Sonzee, 

The day has almost passed me by without me even realizing I had not written you your weekly letter.  When your 6 months fell on a Monday it threw me off completely with the weekly count. I have to admit that things have been so crazy I had to go back and adjust one of my previous letters to you because I had the wrong week listed.  Between going and forth between Phoenix and Flagstaff so often, my starting virtual FBC, trying to figure out what we want to do with the school year with your siblings, and Tzviki's hockey schedule it has been one hot mess in my brain. 

Tzvi tried out for a few different travel hockey teams and to be honest his choice isn't exactly the one Aba and I are sure of, but we are torn on if we just let it play out or if we should make the choice for him?  In the end, while drastically different than any choice we were ever faced with for you, it is still a balancing act of making sure we follow his best interest but make sure his happiness is the top priority.  This hockey life is honestly no joke.  In addition to making his team choice is also the effect it will have on us coming back and forth to Bear Pines.  Honestly, I am just not sure I am going to be on board with any team this year because of the weekend requirements at his age level.  

This past Friday marked the final payment for your gravestone.  I remember when we first spoke to the office about the payments now seemed so far away.  I sometimes wish time would slow down, but really the only time that would be nice to freeze and have on repeat is during your first 6-8 months of life. Those videos are my most favorite to see in google photos, and they bring me back to this ignorantly blissful time before all the complications of life with CDKL5 really came into focus.

Overall work has been going well.  I am loving getting to virtually see familiar faces from last year and get to meet some new kiddos.  The most challenging times are the ones that just come out of nowhere and bring me back to a specific time with you. Like last week when we received a message from a parent canceling our session due to a seizure.  The moment it came through my heart stopped and my immediate thought was I wondered how many times I had written that same message to therapists and your teachers.  My next thought was how even though I wrote to the parent I completely understood, she doesn't know how much I really do.  There are other times during sessions where I see siblings doting and I smile thinking about all the times yours did the same.  I have only had to turn off my camera once over a situation that made tears come to my eyes, I don't think anyone even noticed so I think I am doing as good as can be.

While I have yet to see you in my dreams, I have been told by more people that they have gotten to see you.  Apparently, you are just doing amazing, swimming, and in general giving off an amazingly happy and independent vibe.  It brings me such happiness to hear.  Aba thinks I need to be more open to seeing you, I am just not sure if I could handle you leaving me, so as I am sure you gather, I am hesitant.  When we are both ready I am sure I will get to see everything for myself.  

On the whole, everything here is status quo.  We miss you incredibly and hope you feel that and our love wherever you may be. Until next week.

Love always, 

The Mighty Contributor

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