Today marks 18 weeks and 1 day since you were last here. This past Friday we donated your PPod chair and all of the accessories to one of your friends. I felt the family wasn't exactly sold on its overall benefits, but I know the amazingness of that chair, so I figured in time they would come around. I did message a mutual acquaintance to let them know that I donated the chair and to just check in with the receiving party to make sure all was well. Then I read a message on Facebook that the chair is now fully embraced and loved. Despite not being worried that this would be the ultimate verdict, my heart needed to know this was indeed the fact and so now I feel more at peace.
In case you forgot, that chair was huge, and between the chair on its frame that was sitting in the corner, and the accessories aba and I shoved under our bed, our room feels like we just gained about 200square feet. I will admit I finally put away the oxygen concentrator, your two nebulizers, the pulse oximeter, your Tobii eye gaze, and the remaining items of yours that we are keeping. All that is left on the floor of yours now is the suction machine I haven't decided on keeping or giving away, a binder from FBC that needs to find a new home for a child who has a visual impairment, my hospital backpack that I cannot bring myself to unpack, the large floor mount for the Tobii, and the special tomato chair that we would like to sell.
Bubbie went with me yesterday to visit you. I took her on a little stroll around the cemetery showing her the headstone we settled on, the color, and the other items. We combined ideas originally from walking around, so it was the easiest way to explain it all. The weather was actually really beautiful, just really windy so I was thankful I was wearing a mask because the sand was blowing all over the place. She took home a rock to decorate for you as did I because I am behind on documenting some things.
Your older siblings have been taking advantage of the wind and have been flying kites in the front yard. As I was watching them I could picture you sitting in your Rifton on the driveway with nurse Paige or myself holding the string and you flying your very own kite. Since that isn't possible I switched my thinking to you were flying around with their kites. I am pretty sure it isn't too far from the truth because after failing for a complete day to get Laeya's kite to fly it actually did for a significant amount of time yesterday, so thanks for the boost. She was so excited. She had been feeling really down about it on Sunday.
We have been continuing the tradition of going back to the carwash regularly. Noam is constantly saying "tarwash? Sunday, Dondee" He knows that is what needs to happen on Sunday. We haven't cleaned the inside at the carwash since quarantine started, and I tell myself every time that I will come home and do that part, but I have completely slacked. The outside of both cars look very nice, but the insides are essentially a lost cause. I did place 2 garbage cans...but it isn't really doing the trick for the handprints all over the glass. Maybe this weekend?
Sadly, we received the final word that camp has been canceled for Laeya and Tzvi, and so with a family vote, we came to the decision that New York was just not in our best interest for this summer. I have taken some time to process this as it seems this entire year has been full of far too much change for me to grasp. I think I am the one most upset about not going, but I do know it is for the best. I just want to go back to you being here and us doing a redo for the challenging turn out of last summer when you spent the entire time sick and traveling all over NY to various hospitals. In the deep recesses of my soul I know I wasn't really in the best mental place to be going to NY, but I felt like I needed to do it to try and help myself move...not on, but in some direction. Clearly, that is not what is meant to be, and so until summer 2021, we will be missing our vacation village family and all the first memories your oldest sister and brother were going to make at sleep away camp.
This whole entire year has been one huge horrible excuse for a year. I am at a point now where I find that I should just continue to be beaten while I am down, so I hope all of the "worsts" happen during 2020 so we can at least deal with all the low blows all at once. It seems to be working out that way regardless, so what're another 6.5 months of potentially added "let's try to make this a positive" situation?
I hope wherever you are that you are having a fantastic time and not having to deal with any of the challenges that life presents us with down here. I hope you get to sit on a light post and just take in the beautiful sights and only experience the joyous parts of everything that I can only even begin to imagine. As always, stay safe and don't forget I miss you, as do so many many people, and we love you and we hope you are doing well.
Love always,
Ema
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