150 weeks

Dear Sonzee, 

Today marked 150 weeks. We are just 6 weeks away from the 8th of Shvat and only 6 weeks and 4 days until your English deathaversary. I dislike this time of year. Today was the first day of Channukah and the second night. This is the worst holiday for me without you. I waited until the very last minute (think right before candles were lit) Sunday to finally buy the Channuka pajamas. Chanukah was the very last holiday you had with us. We took the very last holiday cousin picture. The last one where you would all would wear matching pajamas. This was the first season that I decorated as much as I used to. It had only been Thanksgiving and now Channukah, but I think it all caught up with me. All my attempts at subconsciously bringing back normal. Sometimes I want to slap myself in the face for attempting the impossible, for being so dumb. It can't ever work. Unless you miraculously appear (healthy and whole). (*But side note, please don't just do that, it might cause me to have a heart attack, so a warning would be nice).

This last week we had Tzvi's hockey holiday party. It was so much fun. I absolutely love the families on his team. I wish it could stay this way every year, but that isn't how this sport works. This last week Meena was officially placed on Team for gymnastics after winter break. She will be going into training level 4. The idea would be for her to compete in the fall in level 4, but if she doesn't have it mastered the fallback will be level 3. She and I were both shocked at the placement. I am in awe of her talent and her dedication. I have to make a phone call to her summer bestie's mom to discuss what this means...just know it's coming if you're reading this.  But she and Tzvi will now both have to come back from New York earlier than Noam, Laeya, and I. When I said to her that we had to discuss summer, she immediately said, "what, that I have to come home in August?" When I said yes, she told me that she knew that and she was ok with it. So now I will officially be a gymnastics mom and a hockey mom. I just pray the travel/competition weekends don't overlap (much).

This last week your oldest sister aced her math test! She has been working so hard to do that. We are so proud of her! In less than a month, she will be a teenager. (Deep down her birthday is a double edge sword for me. It was the day you officially started to die). Even though deep down I know it was months prior, that was the day she turned 10 and you spiked a 103+ fever. The day before, on the 17th I received your 5th birthday shirt along with Laeya's 10th. I reluctantly bought yours despite my dream/premonition that I bought you the shirt and you died. That dream haunted me for months, but what were the odds that it was more than a dream? We had just met with palliative care and social work on the 15th and they struggled to believe my gut, so I started to doubt it, I started to really believe you would live to turn 5, so I bought that dumb pink shirt with the glitter purple 5 and it arrived on the 17th and sat on my desk and taunted me for the rest of your life.

I don't really understand how it is about to be 3 complete years without you. I don't understand how you would be turning 8. I don't understand any of it. I still don't understand why you weren't born with a complete CDKL5 gene and why you were so affected by your simple mutation. One little spelling error that completely derailed everything; your life, our lives, everything. I have always tried to never question why you or why us...but I simply just don't understand and I guess I am not religious enough to be ok with not having the answers, at least not this week...probably not in my lifetime if I am honest. 

Missing you just gets harder. The pain gets worse. Time heals nothing, it just gives you the opportunity to learn about your audience in better ways. It gives you the ability to read the room a bit more, and figure out who can and cannot handle a loss of a child that isn't theirs but that is too hard or awkward for them to talk about. Time gives the ability to understand that there are just some things that others are (thankfully) never able to comprehend, and no matter what they won't ever be able to relate to me. Time has taught me that society has unspoken lengths of time that grieving is "allowed" and that supports are given. Sooner, rather than later, the once awkward question of "how are you" is no longer asked. Time allows everyone to move forward even though I am forever stuck without you.

I wish so much I could peek into wherever you are. Please come and visit! I miss you lots and love you more!  

I hope you are having a wonderful Channukah!

Until next time baby girl!

Love always, 

Ema