At 1:08pm (PST) another week has gone by. This time it finishes with you being joined by another CDKL5 sister. Being that I removed myself from the CDKL5 support page a year ago, it was Harper's mommy who sent me a text about the situation when she first heard about what was happening. The eery similarities that fall within the realm of death of you all make me a good portion of sick. This time, it didn't follow the way your end of life unfolded, but instead another sister of yours. I wish someone would do research on the deaths already, but I am just not strong enough for the battle that would take. Sadly, in time, research will cover that as well; you know after enough of you have left this world.
When she first sent me the text, my response was that I didn't have the strength to reach out. After a few days, I put on the big girl panties and did what I could. Her mom told me last night she appreciated what I did this week despite how hard it must have been...one day (soon) she will know exactly how it went down. That makes me even sicker than I already feel. I hope you and the rest of your CDKL5 siblings were there to greet her! I hope you have taken her under your wing. I imagine even if you all do your own thing on a normal day, on days like today you come together like a huge camp reunion to show each other the ropes. I know it softens my anger and helps me rest a bit at ease thinking 73 weeks ago the same was done for you.
This week has utterly sucked. There is zero sugar-coating how it feels to be back in TH49 without you. I initially breathed a sigh of relief not seeing the blankets we used to lay on the floor for you to roll on. The ones I wondered if anyone else ever used or if I was the first and last one to wash them each year. Then I went upstairs to the room you used to share with Meena, the one we don't need to use this year, and there they were...organized neatly on shelves staring me in the face. I walked out of the room and closed the door. I keep that door closed all the time.
So many people have mentioned you. There is a part of me who wishes they wouldn't. I can see it in their eyes from 10 feet away as they make their approach that you are on their minds. They have a look on their face that makes me want to run away. Instead, I embrace them and the words come out of their mouths. They mention your name. They do make me smile. I would most certainly HATE if they didn't mention you, but there is ZERO winning. I can't always stomach a conversation about you but I wouldn't be able to survive without having conversations about you. The truth is that people don't know what to do or say, and neither do I. This life after you is really hard, even 73 weeks later.
Laeya and Tzvi appear to be having a great time in camp. I made the mistake of not sending them with trunks of food nor Tzvi's hockey stick...live and learn. Oops! The camp of course took it upon itself to make sure your brother now has snacks available at his whim in his bunk. Every video and picture of them makes me smile and reassures me that they are having the best summer. We took Noam on his first official train ride yesterday while visiting Aunt Ronit. He couldn't get enough so we told him we would do it again and go into the city. He and Meena started camp today.
Anyway, baby girl, we miss you beyond words! Stay healthy and safe!
Until next time.