The Night Before

OK, so the title is a stretch.  It is now the night before my visit with Avi, but I am tired and I cannot come up with anything more original.  For those who have not figured it out yet, I am on a mission to title all of my blog posts (for as long as I can sustain it) with Beatles song titles.

Anyway, tomorrow I will see Avi. This visit will be just me, as Marsha has to continue cooking for the Seders. Today was the second Shabbat that Avi has been away from us. Last week, I told him to call as normal at 6:00 and I would pick up the phone even though we normally would not on Shabbat. Today I had a problem in that I was going to be at Synagogue at that time. I called the hospital at just before 4:00 in the afternoon and I was told that it was not phone time. I explained my Sabbath issue and they said that it was ok to speak with him.

Avi came on the phone and told me that he did not have a very good day. He got mad and knocked over some chairs. Now Avi basically has two negative emotions. Sad and Mad. He does not really understand any other emotion, so when he says he was mad, it is very hard to figure out what he means, especially over the phone. And he may have knocked over chairs once during the day and the rest of the day could have been fine. To me that would be a good day, but I may never know.

Then he started crying and asking if I could take him home when I come to visit tomorrow. I told him no, and he continued to cry saying he really wanted to be home a few days before Passover so he could do some preparation for Passover. So tomorrow morning I will call him and ask him if he wants to do a project when I come to visit and I will bring materials so hopefully he will be happy from that.

He is keenly aware that Passover is Wed night, and I think he will be devastated if he cannot come home. In fact, I wonder if it will be a worse thing if he has to miss the Seder. So on Monday I will make sure I speak with his case manager and try to figure out if he can come home by Wed morning. I am praying that this will be the case. The other day I had asked about the possibility of bringing him home for the night so he can at least be at the first Seder. I was told that they do not do 24 hour passes. If I were to just take him home, the insurance company would not continue to pay and we could not bring him back. So if it will seem that he will have to be there on the holiday, I am going to really push for us to bring him home on Wed afternoon and then I will drive him back late after the Seder is over. It may be that he will get there at 11:30 or midnight, but I will get him back. Again, I think if he found out that he was not going to be at the Seder his reaction will be so horrible, and I cannot predict what will come from that.

When I was discussing visiting Avi through Passover if he is still there, I explained to the case manager that I cannot come on Wed evening when they have regular visiting. We decided that Marsha and I can visit on Tuesday evening instead, so that will be good. Then I told her that next Sunday will be no problem but the end of the Holiday is on Tuesday night and Wednesday night, so we would have to figure it out (I will be willing to drive on the Holiday if it is the only way). She told me that is was extremely unlikely that he will still be at the hospital at that point, so that is at least a light at the end of this part of our winding road.

It’s now 1 am on Sunday morning. Marsha, Carla and Lisa are finishing up this evenings cooking and hopefully we will be going to bed soon. I cannot stop thinking about my conversation with Avi and his crying to me. It is so hard to hear this and I just have to keep reminding myself that this is for the best and we need to see it through. It is just hard sometimes to remember this.

More news soon.

1 Response to “The Night Before”


  1. 1 Shiny April 5, 2009 at 5:18 pm

    Phil —

    I’ve been reading through the past several weeks of blog entries regarding Avi and ASD and the issues regarding treatment and hospitalization. This sounds like an incredibly trying time for you and your family.

    I know that this is likely little consolation, but your actions through this — looking for new solutions, trying new things, and making extremely difficult choices — show how much you love Avi and how much you’re willing to do in order to make sure that he can thrive in the best way possible. Each choice that you and Marsha have to make must be so tough, but I know that you’re putting a lot of thought into it all and are doing it for Avi’s sake.

    You and your family are in our thoughts. Please send our best to Marsha and the rest of the family.

    — Mike and Kyra


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