Dear Sonzee,
Another week has flown by, but what a week it has been. I don't even know where to start. Last Monday we completed our first family pictures minus the physical you. It was mentally more challenging than I anticipated (and trust me I was pretty sure it was going to be awful, so I wasn't too far off). Yet, I managed to make it through them. Mrs. Nonni did such an amazing job incorporating you in them, and I am just now excited to see them. The problem is that I am excited to see them, but I am already swallowing the lump in my throat as I consider the thought of having pictures without you in them. I don't know if I will be able to do more than look at them? I don't know if I will be able to actually put them up anywhere or change any pictures that actually have you in them, but I guess that will be something to deal with when I get them back.
Last week we had family grief group. Aba and Tzvi were in Phoenix and unable to attend due to hockey, but the girls and I participated. It was a really good session. We made a chain of paper with each of our emotions and messages etc. individually written and then connected together. As open as we are in the house about your absence and death and everything your siblings have had to deal with I am always surprised when something they do or say takes me by surprise, which is exactly what happened when it came to writing down emotions we have felt in grief. Your oldest sister put that she is feeling scared. I honestly never thought any of them would feel scared because we had always told them that you dying was a sad reality we would most probably be facing. I figured that because you had a CDKL5 mutation and none of us did, that she wouldn't generalize death outward. It turns out though, she is still scared about another one of us dying too. Me too baby girl! Me too!
This Friday on the Jewish calendar it will be a year since Saba died. We are going to be back in Phoenix and will do a special Shabbat dinner in his honor. While it feels like time won't slow down when it comes to your death, for me, it feels like the closure of Saba's year took a lot longer. It means that your year is just about the corner. Something I am pointedly aware of but wish it wasn't the case.
In 10 days we are celebrating Noam turning 3. You two would be the best of friends, I know it. He LOVES to look at videos of you. He knows exactly who you are. He talks about you all the time, and as I have mentioned previously he really misses kicking you and you kicking him in the car. There was another little squabble last week when we drove up here because he was tormenting Meena. She just doesn't care for the foot to her face like you did.
It took about a week but basically, all the snow is melted here in Bear Pines. There are a couple patches on the roof, but they will probably be gone tomorrow. Now the pine needles have to get removed...again. Your father and his need for "good old nature", has me over the pine needle situation. We will now be having a company remove them because nothing is more disappointing them spending 8 hours raking and making piles and making the yard look so pretty to return 3 days later too....the same exact amount of pine needles all over the place. So, I am quitting. We had the dead tree branches cut down and there was a dead tree that sadly had to be removed. I was worried it would make the backyard look like it was missing something, but it actually looks great, and I think we are going to carve our initials into the little stump they left.
A family of a newly diagnosed little girl reached out to your Facebook page the other day. She was also 8 weeks old. You used to hold that youngest age of diagnosis spot. She messaged me to ask what your current skills were. I had to read the message a few times to properly process it. I didn't understand how she missed that you died, but channeling back into my earlier days I am sure she was just grasping for something, anything. My heart hurt for so many reasons. The first is that I had to be the one she reached out to as her first intro into CDKL5. I don't know what "hope" there is when you are told that the child you are hoping will give you something positive to look for with your child is no longer alive. My heart broke to tell her that. My heart broke because I was once in her position. My heart broke because after so many back and forth conversations I just couldn't do it anymore. I lasted longer than I initially thought I would, but eventually, I placed her into the hands of those who would be better to serve her needs and I closed the messages.
At least in your death I am finding a way to be true to myself and doing what I can and not more. It is yet again another skill not mastered, but I know there has been a lot of improvement.
Anyway, my little bear. I have rambled enough. I miss you so much and love you even more.
Until next time.
Love always,
Ema
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