Monday, June 1, 2020

17 weeks

Dear Sonzee,

Today is the first day of June, and at 1:08pm it will be 17 weeks without you.  Today also marks the last Monday of school for your older siblings and it would have been your second Monday of summer break.  Today is marking a lot of reopenings in Arizona as far as activities go and after much deliberation between aba and myself, we have decided to allow your siblings to start back at Hubbard at the end of the week.  They have a very strict policy set into place that makes us feel as comfortable as possible, however, it is with extreme sadness I inform you that the special needs program at this time has been placed on hold.  I have cried about it a few times now, I know it makes little sense since you aren't here anyway, and I do understand it is for good reason, but I am still so sad.  Aba and I have wondered if we would have begged coach Ed and Mr. Bob on the down low to allow you to go during a lunch break as an appeal on behalf of your quality of life.  It would have been extremely challenging for us to take that away from you, after all, your entire life we did our best to juggle a form of quarantine and balance your quality of life in all areas every single day.

I am having a very difficult time with the kangaroo paws in your garden, so if you could pop on over and sprinkle some life back into them I would be greatly appreciative.  I have spoken to at least three high-level moon valley nursery people and none of their advice seems to be consistent or helpful in keeping those plants looking as good as they did for the first 10 days.  Sigh, I knew it was a long shot, but I am still upset over it and unable to throw in the towel on them.  I haven't really been one to give up on anything related to you, so I will call this par for the course.  I would really like them to be as pretty as their neighboring milkweeds.

Today marks the beginning of CDKL5 awareness month.  I placed a new awareness sign in the front yard and aba placed one in Auntie A's yard.  I realized last night I should have done a fundraiser in advance and then sold the signs for your and learn right?  Auntie A says I can do it next year, so let's hope I remember in enough time to do so.  I am torn on adding the profile frame we made on Facebook a few years ago to my profile because part of me is still wanting to have nothing to do with that stupid string of characters.  I think it is still a little too soon for me to be spreading anything besides the fact that the disorder can steal more than just milestones.  I am aware that right now I am just not up to helping push for a cure and honestly no newly diagnosed parents want to hear that their worst nightmare can actually become a reality, heck, no currently diagnosed parent wants to face that death is possible either, so I think for now I will just keep the picture of you and me without any mention of CDKL5. 

Mimi's mom (Auntie Rachel) sent a rock to add to your gravesite.  It is really pretty and I placed it by you yesterday.  Meena found a heart-shaped rock over Shabbat in the front yard and she painted it yesterday and I will be bringing it to you tomorrow, along with a "my first Shavuot in Gan Eden" rock.  Sorry, it is late, when I went to see you Thursday I immediately realized I had forgotten to make one, so now it's been completed.  I sprayed all of your rocks with the clear coat acrylic spray again yesterday to make sure the sun doesn't damage them.  Tzviki is making your 4-month rock for Wednesday, I am excited to see what he decides to do.  I often wonder what your place looks like at night, are the glow paints still glowing?  Have you gone recently to see everything? 

Your siblings and aba have been using your swim spa, I personally cannot bring myself to get any closer than walking up the outside steps.  I don't know why specifically, but the thought of going in it without you is just something I cannot bear to do.  I didn't feel like explaining to everyone that I was going to cry if I stepped inside yesterday, so I just told them I wasn't in the mood to go in.  I am so glad that it is being used, but really you should be inside of it.  Your siblings are constantly arguing over who uses your pool floats, you should pay them a visit and let them know that isn't nice, maybe they'll listen to you?

I hope that wherever you are isn't as crazy and unsettled as it seems to be here these days.  I hope you aren't alone and someone is there to guide you as you navigate everything.  I hope and pray you can come and visit as often as you like, and I really hope you aren't in any pain or having any seizures or discomforts.  I hope I am ready for you to visit at some point soon because I really really miss you.  As always, stay safe and know we all miss and love you.

Love always,

The Mighty Contributor

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