Dear Sonzee,
145 weeks, two days, 8 hours (and at the time of writing this word, 7 minutes) have passed since you were last here with me. The last 2 weeks have gone by, with each Monday coming and going with me intending to write you a letter, but the weight of grief disabling my intention. There is still such a heavy breath-crushing grief that happens. Over the last two weeks, FOUR more CDKL5 siblings went to be with you. Maybe you already knew that? Perhaps you were part of the welcoming committee for them? Maybe there is a place in heaven where you meet with all of those who had a CDKL5 mutation and you get to celebrate with all you are all able to do now?! That brings happy and sad tears to my eyes simultaneously. On the same note, my heart, albeit numb from all of the loss CDKL5 brings, has broken more. So much so that I had to take the stomach meds that I haven't had to take since you were here and my stress was insane. It doesn't help that we are coming up on Thanksgiving, which has been tainted since the last one you were here for when aba had to rush to Florida because Saba went into a coma.
We are also 4 days away from your brother being your exact forever age. As I was laying with him tonight, playing with his hands, I wondered if yours were really just as small. I thought about holding his up to your handprints, but that would just make things worse for me. I thought about the last time I laid down with a child his age, it was you, and at this exact age, you were dying. We snuggled non-stop for the last two weeks of your life. In fact, I didn't even go outside, I had no idea it was cold until I placed you on the gurney. I am stuck because there is a part of me that should be relishing my last baby being four and turning five, but I am just counting down the days until he is finally five and I don't have to be haunted by these beautifully horrible memories of you. I should be thankful, after all, everyone wants their children to stay young forever, and I will always have a forever four-year-old. It won't matter how many years continue to go on.
For the last two weeks, I haven't been able to muster the strength to compose a letter to you. The reality is that to write you a letter means I have to allow myself to feel all of the emotions that I have ignored during the previous week. When it becomes too much, I skip it altogether. The problem is that when another week goes by, more weighted grief is added on. The burden becomes suffocating, and the only option is to force me to deal with it all. I know that is healthier, but at the time it seems easier to push it off. 145 weeks has taught me, it is not.
The last two weekends we have actually been home. It has been nice (and also short-lived, as your sister and I head to NY for the weekend, again). This past week aba and I went to a smile on seniors Chabad cocktail event. I have to admit, and this will be the first time I will be saying my thoughts out of my head, being around that community makes missing you harder. The best thing you did for us was flood 19th street. It is so incredibly hard to be around all those people who were there during your life. It probably doesn't make much sense, but does anything when it comes to your death? I managed to fake my way through it all, even with smiles and laughter. My motto always was "fake it 'til you make it" (it is one I have successfully mastered).
This week your brother finally graduated from Goldfish at swim! It only took him 3 years to move out of that level. Not to compare but your other siblings were far more advanced when it came to being around the water. It is ok, he is just ensuring we stay a Hubbard family for another 10 years. On that note, I have been looking at older pictures more over the last two weeks and you have so many with coach Ed. It is impossible to comprehend you are both not here, but I do hope you are swimming together! Your floats are still hanging in the same spot, on the same hooks, I wonder if they are ever used?
Over the last two weeks, I (accidentally) clicked on a video of one of your seizures. It was 2 minutes long and I was locked on it for 1:04 until I couldn't keep watching. It made little sense because my eyes filled with tears over thinking how I hate watching you seize and I never want to see you seize again, to missing both?! Can something please make sense?! I wouldn't wish for you to be here just for me to watch you seize but reiterates that you are gone. Again, this is a fact my brain is well aware of, but one my heart still tries to grapple with.
Anyway, baby girl, I will do my best to write to you on time this coming week. I know I have intentions of writing more, we will have to see how it plays out. Have a great week. Enjoy your freedom! Come and visit! I miss you a lot!!!
Until next time.
Love always,
Ema
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