Monday, March 1, 2021

56 Weeks

Dear Sonzee, 

So much has happened in the last week I have intended to write you multiple letters, but then time was short and as it inched closer to today, I figured  I would just save it all.  Last week a new friend started at FBC.  From the initial meet and greet, I felt like she was going to be very similar to you, and then I met her.  I was 100% correct.  She was having a tough day on Tuesday and I decided to take her out in the wagon because I know how much you loved being outdoors.  She didn't instantly calm, but within a few minutes she was enjoying her wagon ride and she even took a 30-minute nap after returning, something her mother stated she hardly does.  I really enjoyed my time with her, so much so my mind got lost in the moment and I was late to one of my virtual sessions.  A few of the kiddos remind me of you, it is equally amazing and equally challenging, but thankfully the tears are trained to remain inside my eyes and I can usually play them off (at least I think I do).

Laeya had another one of her malachot fairs at school.  I stopped short when she tossed all the invites at me and as she casually mentioned she created another one for you since when she davens for you to come you normally do.  I told her since she was so good at that, it would be best for her to talk to you.  Man, that girl has a knack for making me speechless. I have no idea what to tell her.  I was relieved she didn't ask me if I thought you came. I had been trying to plan a response, but couldn't find the right one. They could all potentially lead to her rebuttal of "how do you know?". Umm...well, I don't.  So, I am so thankful she must have felt you came.

As far as Tzviki's hockey games. I am sorry for all of the short notice requests, so I am going to let you know in advance his state finals are coming up in the next 2 weeks, and it would be great if you could help guide him in those games.  You know, just set him up for success and let him work out the rest.  His team has been doing amazing all year, sadly lost their 2nd game of the season yesterday, but I just hope they don't fall apart at the end.

Your bench was finally placed. I didn't like that the front part of the legs wasn't polished.  I didn't know that was a choice, but apparently, not even the staff all do, so it wasn't offered to have all the parts of the legs polished.  We are going to have new legs made. I understand they match the matte portion of the front of the yahrzeit candle marker, but I just don't like it, it isn't perfect.  Which makes me wonder if I will consider anything perfect when it comes to your final home?

Purim was this last week.  I never have cared for the holiday since you were born because we always seemed to miss it and have to have someone read us the megillah at the hospital or have someone come sit with you while I went to be with your siblings.  I was going to protest it completely, but I made a compromise with myself to at least hear the readings. I followed through, but I still dislike the holiday immensely. 

To wrap up the week, yesterday was rare disease day. I am a little bitter about the day, to say the least.  I wrote a post that I am sure offended some, but at this point on our journey, I am starting to care less and less about that.  I just feel robbed by CDKL5 in its entirety so I have zero positives to say about the genetic mistake except that it brought some amazing people into my life, but as far as anything about anything positive in terms of characteristics of the genetic typo, nothing to say besides it kills.  

Anyway my love, I miss you tremendously!

Until next time.

Love always, 

The Mighty Contributor

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