Dear Sonzee,
I met another Monday without you here. Somehow it came, and then it went, like the 93 others before. Just like last week and the one before, I still wonder how time continues to pass me by. I wonder how we have almost completed our second set of holidays without you here. I wonder how next week I will be making another monthly rock. I wonder how any of this has happened.
This week someone joined two of the CDKL5 support groups I am still an admin of. One of them is the one that Miss Penny started, Life after CDKL5. The person stated they were an aunt of a newly diagnosed child. They also joined the Extended family CDKL5 group that I began to keep the peace in the parent group. I sent her a message after I deleted her request and explained the group was only for those who have buried a child who had been diagnosed with CDKL5. She casually replied she was not aware children diagnosed with CDKL5 could die and she just wanted to support her niece. (Must be nice to live in that bubble, although I popped it rather quickly when I mentioned that unfortunately yes they do and you died almost 2 years ago). There are definitely parts of your old ema that left with you. Like the part that feels the need to coddle anyone in the world of CDKL5 or the part that gives a care about taking any sense of naivety away from someone in an unrealistic lala land of CDKL5 rainbows and butterflies. Hashem help me to those who mention the word hope and cure in relation to CDKL5. I can't tell you how many people I have snoozed or simply removed off of my friends' list lately.
Sorry, I have completely digressed.
This week we had a birthday party for Noam. He will be four in just 6 days. I don't know how I am going to deal with that. I mean I do, because I have to, just like every other day since your death. But you are still 4, you will always be 4, forever, but your brother will now also be 4, and (G-d willing) he will one day be 5...but you won't. Mrs. Zupnick did most of the planning and pretty much everything (except I did make Auntie A do the invitation). It was a joint party with Nosson. It was so cute because he has spent the last 6 months asking about his birthday and he isn't really processing it is about to finally be here. He will spend the actual day at your brother's hockey tournament (maybe you could help him with a championship win this weekend?!) and then it will be the first night of Chanukah.
This week there were sadly a whole bunch of new parents in grief group. It is always bitter-sweet to have new parents come. Horrible for the circumstances, nice to have others who get life now. We went yesterday to the park and made disposable boats and sent them off in your honor with flower petals inside. We were given a new blanket, it is red, black, and white, and perfect for your honor. We made a circle and then they read your name off a card, a woman next to me wore a "White Cane Walk 2021" shirt from FBC and reached out to my arm when your name was read, I wish I could place who she was and who her child was.
Your sisters received their scans for their expanders that will be placed next week. They keep complaining about the lack of candy they will be able to have. As with many other topics, I tell them to file it under personal problem. Instead, the Moonzie bear continues to "forget" that she can't eat the candy and she has lost two spacers already and had to have them replaced. She is driving me completely crazy with that! It is going to be a lengthy 10 months with her for sure.
Anyway my love. I miss you so much! I hope you are safe and well. I hope you will come and visit me soon!
Until next time.
Love always,
Ema
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