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
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