Today marks 10 weeks since you were last here. We are already halfway through Passover and almost halfway through April in general. All of your siblings stayed up for the entire Sedar both nights. It was really mind-boggling to me that it was still just as late as every other year even with it only being us. To be honest, I was not really feeling all of the laughter and holiday spirit the first night, but by night two I managed to get myself into character and read in silly voices and it was fun. We finally remembered to wear the face masks for the 10 plagues, and since you know how dark humor runs deep in our house, Laeya thanked you for taking the position of death of a firstborn. We did remind her that she wasn't the firstborn son, but, she was thankful nonetheless.
I have been reading in many books and have been told by other bereaved parents to do something a little different for holidays since it will be challenging enough to not have you around in general. I decided that I would start by buying myself a bouquet of flowers, once I got onto the website, I decided to just go all out and buy the biggest one that had the most variety of colors and said "Sonzee". The one I chose has various types of flowers and a multitude of bright colors. I hope you would approve of them. I placed them on the center of the table when they came and was proud of myself for "changing it up", but then when I looked over at them during the Sedar I couldn't help but get tears. I swallowed them up pretty quickly, but as usual, I didn't expect that to happen.
This whole grief journey is almost more of a roller coaster than living life with CDKL5. At least, for the most part, the ups and downs came in waves that were slow building to start but then turned into Tsunamis. This is more like a series of 10 feet waves that pound the shore and then vanish into calm seas where you question if the waves were really even there. My heart and mind change by the second. I used to be able to take things day by day, but it seems now they are literally broken down into just minutes. I can get two people checking in on me within 5 minutes and my desire to reply or the words I want to say can be vastly different. I tend to stick to the emoji kiss in the majority of my "not up for talking" moments, because it sums it up. I am appreciative for the check-in, I know they want me to know they are thinking of me, but my heart isn't in a place to reply with words.
Your little brother, the king, slept too late yesterday for us all to make our weekly family visit together to see you, so Tzviki and Meena came. They borrowed two rocks from your basket, but don't worry, they are all painted for me to return to you today. I am going to bring some clear acrylic spray paint to cover all of the rocks already painted because I am afraid the sun is going to wear them down over time, and that thought alone is making me anxious. I am sorry I haven't painted any new rocks this past week, I was getting worried if I continued, I would use up all of the room this year, and well, we have decades to go.
Noam has been calling out to Laeya shortly after aba or I have read him his 193837 night time stories. She climbs into his bed and they talk. You would be flabbergasted by his speech these days, there are times throughout the day where I do a double-take wondering if it was really him who just spoke to me. He has become the cutest, most yummy, insanely adorable two-year-old. Aba has been a bit bummed lately because he has not been requesting the "Dondee book", I have reassured him he has his own form of grief as well. During one of Laeya's and his evening chats, Laeya came out to inform us that he couldn't go to sleep because he was missing Sonzee. I sort of gave aba the "aha. I told you" eyes, complete with a head nod, but deep down I was holding on by a thread to not cry. I am so thankful they all have each other. You should know that you are going to be the glue that keeps them so closely bound together for the rest of their lives.
Laeya told us you were in one of her dreams last week. She said you were a superhero, complete with the cape and all and you came to save the day between a little rift that was occurring. I think it is fitting since she wrote that essay where she considers you her superhero. Aba was a little jealous you haven't visited him, but I told him that he and I just aren't ready yet. I don't know if that helps him at all, but it makes it a bit better for me. I was told that you will come when you know we are ready for you. I do wonder what ready means though I am doing my best to trust you will know best in this situation, just like how you always trusted me when you were alive.
I have been doing a lot of daydreaming of wherever it is you are. I have been trying to figure out how it works in Gan Eden with social circles. Did a flood of people come to surround you when you first arrived? Since then who have you met? Where you waiting to meet the famous Charlotte because of her impact on you? She was the one who inspired us to try medical marijuana for your seizures. Did you meet Anniston who had a different genetic mutation that caused Krabbe but whose story Ema followed for years albeit her different struggles from yours? Were you able to meet up with Harper yesterday to celebrate what would have been her 10th birthday? I know Miss Penny and I wish so badly you girls could have met when you were both alive, I still find it challenging to believe you are both gone.
I would love to know who you have met over the last 10 weeks? I wonder if there a waiting period before you get to see certain people or do certain things? I guess I will have to settle for waiting for all of these answers, but until then, please continue staying safe, and remind yourself that we are carrying on down here no matter how difficult the days and that we love and miss you greatly!
Love always,
Ema
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