It's been 30 Monday's since our last snuggle. I still cannot figure out how so much time has passed but yet it feels like it was all yesterday. This week your siblings asked each other and aba and I what our favorite two memories were of you. I could tell aba was as frozen as I was with the question and I was thankful I was able to give a quick response without completely falling apart. It really makes me so happy they bring you up and are comfortable sharing their feelings about you, but it is still hard for me to always manage to keep the tears at bay. There are times when I have no problem talking about you in an upbeat happy manner, and then other times where it's hard to form any thoughts without the tears and the lump in my throat.
I have found myself lately staring at the sky trying to see if I can find some sign from you in the clouds. I keep wondering if I stare long enough I will be able to make myself think you are sending me some sort of message. All the while I think of how insane it is that I am actually doing what I am doing, because what am I actually expecting to see? Honestly, I keep trying to find signs of you all over...I think my mind thinks that if I do then it means you are closer to me?
So many of your CDKL5 siblings are getting older, their families are faced with all the emotions that come with life with a special needs teen or adult. Something we won't ever have to experience. Something we won't ever have any knowledge of since you left us so much earlier. I have started to integrate more into the bereaved mom support groups. Reading the posts still but never having commented, liked, or mentioned your story. I am not exactly ready for that just yet, there are more times than not that I see a fellow bereaved mom write a post that I am like "yes, that", or "yes, you are not alone". I just don't think I can bring myself to admit I belong in that group. I am feeling less and less like I belong in the special needs groups. I still keep myself in them but typically they are muted and if they pop up, I hardly comment.
Today happens to be 12 years since Aba and I got married. When I think back to that day when we were essentially two kids with no cares in the world but a blank canvas, I never thought that I would find us listing our accomplishments and adding buried a child. It makes me really wonder what will have occurred in another 12 years when we should have been celebrating your sweet 16. It almost makes things worse knowing and actually seeing that there is always going to be something of yours that should've been but wasn't.
We brought you a special rock from Flagstaff that sparkles, and one of Tzvi's friends painted you two pretty rocks that are now placed by you. Auntie A is working on your 7-month glow rock and MoMo asked to paint you his own as well. We gave the final approval for your stone, bench, and candle holder. They look perfect on paper so while I won't ever be ready to see them physically standing, I am looking forward to having a bench to sit with you and to see them in person. Any time over the next 2-3 months we should be receiving the call that are ready to be unveiled.
I hope you are doing well and know you are loved and missed. Please come and visit someone I know so I can hear how amazing you are doing.
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