Tuesday, April 20, 2021

63 weeks and 1 day

Dear Sonzee, 

Another week.  Another 8 days to add to the time I haven't been able to hold you or give you a kiss.  Another 192 hours.  When I thought about what I was going to originally write for the 63-week post I anticipated being in Florida pretending life was vastly different than what it has turned out to be. I thought about the figurative reset button being pushed and how when I left in the middle of the week I would be refreshed and ready to go back to normal.  Instead, the reality and my plan (as usual) were on different pages and I am writing to you while sitting on the blanket that we received a year ago at our orientation for grief group, that I placed on top of your hot black granite bench so my butt doesn't burn.

The plus side is that on a good day your absence feels like I have forgotten something (really important), being out of state only adds to that, so it is at least a bit better from that perspective that I am here.  On the reality side of it all, I am really still completely disappointed and saddened that I didn't get my much-anticipated break and bonding with Elle.  It has made me realize that there really is no escaping this new normal.  There really is no way to escape or reset anything.  Your absence just follows me all around and the sadness while shelved for little bits of time can't actually ever vanish.  Not even with the best of intentions.  (PS: It really really sucks!)

I feel like I will be in some forever funk.  I am trying to distract myself, but I keep failing.  Maybe the point in all of this is to realize I just have to give in to it all and deal with it, whatever that even means.  Maybe I just need to accept the reality?  I never could accept your CDKL5 diagnosis, so I am holding out very little hope that I will miraculously figure out a way to accept your death.

Aba and I can't seem to allow any of your siblings to claim your room, so it still is yours.  We have however finally given in to giving Laeya and Meena their own rooms by moving Laeya into what was formerly known as the guest room.  Funny enough, that room and its ADA-compliant bathroom were intended for you, but we realized quickly after creating the plans and living with your seizures that running across the house all night long wasn't going to work and so what became your room was created.  I think it will be perfect when they are both set up, but I am a little blah about the change.  I just liked that we had this extra room for guests (although we all know it has hardly been occupied).

We are going to Bear Pines again this weekend.  Trying to get all the weekends we can before all of the bookings and our summer in NY.  The end of the school year is sneaking up on me and before I know it, it is going to be June and we will be on our way to our first summer in VV without you.  It is going to be a challenge, I won't even pretend it won't be, but for now, I am doing what I do best and putting off any of those thoughts that might provoke my anxiety more than it already is.

I hope you were able to meet Brucie as she crossed over the rainbow bridge.  I hope you guys are back to snuggling and that she makes you miss homeless than you might have been.  I hope you are a comfort to her as well.  Bianca has taken up her space in bed and still goes into your room and lays on your bed on all the clothing I have yet to send out to get made into a quilt.  We did have one quilt made, but so many people offered to make and we have so much of your clothing that I am having one made for each of us along with pillows.  

Anyway my love.  

Until next time.

Love and miss you always!!!

Be healthy and happy!

Love always, 
Ema

The Mighty Contributor

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