Thursday, June 3, 2021

1 year 4 months


Dear Sonzee, 

I wanted to write a blog post on Tuesday because it was the new month of June and I have so many feelings related to CDKL5 awareness and a new month, but then time slipped away.  I was going to write one yesterday, but then the time also escaped (how when you aren't here remains a mystery still).  Then today I sat down at my desk, looked at my phone, and realized today is the 3rd.  How did that fact escape me?!  How did I forget about my monthly post to you?!  Man, this month continues to get more difficult.

In a few hours, it will officially be a year and four months since I last held you and walked you out to the gurney that was placed into the back of a hearse and driven out of our driveway.  The image of the day still painfully fresh in my mind, and all clear as can be.  I still remember walking past all these people that somehow managed to find their way into our home and your room what felt like the exact second you died.  I still remember trying to avoid eye contact with them all because I knew I wasn't strong enough to hold back the tears that would have come and I also wasn't ready to display that in front of everyone.    

I immensely dislike this whole grief cycling thing.  There is a definite pattern to it, I just have not figured out exactly what it is. I just know things are ok and tolerable and then bam, the anger and sadness return in a second.  So much anger! So much sadness!  Part of me feels I should have a sign on the back of the car or wear a necklace around my neck warning people to not tempt me with breathing near me because I don't have the patience to deal with it.  Mrs. Brittany and I have discussed going to that smash place, I think I need to book it for us ASAP.  Maybe I will feel a bit better? Maybe it will at least take the edge off?

3 days in and I am already wishing for June to be over.  Packing is fully underway for our departure in 17 days, but mentally, I. am. NOT. Ready.  I wish I knew how to prepare myself for what is to come in 3 weeks, but I know better to even try because it will only result in something I hadn't even considered emerging and throwing me off my already derailed course.  I will just pray you can help me through it in some apparent way.

I wonder so much about what you have been up to over the last month, really, the last 16.  I wonder who you are with and if you are wishing you could be back with all of us.  I wonder if you miss us like we miss you, and deep down I pray that you don't because I would hate to think of you feeling like I do.  It makes me nauseous thinking of you missing us and having none of us around to make you feel better.  That concept is too challenging for me to consider comprehending, so I just imagine you like a cute little fairy with a wand bopping around smiling with a group of your friends causing some raucous. 

I don't think I will ever fully grasp this whole concept of time.  16 months since you were last here, a lifetime to go until we (hopefully) are reunited.  Words of encouragement to myself that we will be reunited despite the panicky concern I feel over "what if" that isn't a fact.  Never quite knowing how that ending will pan out because I won't ever learn until I am no longer alive myself and that doesn't sit well with my type-A self.  So for now, like I do at the end of every letter, I will wish you the best, and ask you if you can come and visit.  This month I will ask you to make sure you look after your brother and sister as they venture off to their first summer at sleep away camp and I will ask you to make sure you are with me as we enter our same rental in NY, this time without you.  

Until next time my love!

Love always, 
Ema


The Mighty Contributor

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