Thursday, January 28, 2021

January 28, 2020

Day 5 of Hospice

Dear Sonzee, 

Today would be the last Tuesday you ever saw.  Today was the day Aba and Auntie A would go cemetery hopping and shopping in order to find you your forever home.  I knew my limitations.  The first was that I couldn't leave your side, not when I didn't know how much time you would be here for.  The second was that I just simply wasn't strong enough to do it.  The third was I just don't do cemeteries (but really who does?!). Auntie A was so amazing, the minute I said I wasn't going, she jumped up and said she would go, I didn't argue, I honestly didn't even feel guilty about it (I still don't).  They drove to every Jewish cemetery to make sure they knew all their options.  There was very little I cared about, I just wanted you to be near a child if there was no designated children's section.  Aba sent pictures of what would end up being your current space, I could hardly understand what I was looking at much less say whether I agreed or not.

I will say for such a horrible task, the two of them did perfectly.  You would be diagonal from a little girl, Charlotte Avery, who happens to be Meena's age, but sadly died within a few weeks of being born.  I would have preferred she be next to you or behind you, but those spaces were already taken.  Auntie A said she felt a calmness come over her when she stood in your spot and so she knew it was meant for you.

Today was the day that your father would sell the stocks of the company that had a trial drug for CDKL5 that he had invested into so that one day he could pay for your wedding but instead, we were now going to use to pay for your funeral and the related costs.

Today you had more visitors, more people who wanted to snuggle you and say goodbye.  I believe today would be the last day you would go into your swim spa.  Aba took a lot of selfies with you today and I took a ridiculous amount of videos and pictures of you and your siblings.  Noam spent the day sitting on you or next to you in bed.  He made sure your paci was always in your mouth and he gave you lots of kisses and snuggles. 

I received so many amazing pieces of advice on what to make sure we did with the little time we had left, so today after your bath was the day that Nurse Paige would make sure you had one of your claim to fame boingy curl ponytails and we would give you your very first and only hair cut.  We put your hair in a little hair tie and one of your S bows, the purple one, and cut.  It was such a great job because we did it from underneath in the back so no one could really tell what we did.  That helped my heart for the next few days.  

Today was another day closer to our last day and we did the best we could to make the most of it.  It was a hard day emotionally, but tomorrow would be worse.

Until tomorrow.

Love always, 

The Mighty Contributor

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