It has now been almost 9 months since I last held my beloved boy. It feels like a dream, or a nightmare, well -both. The last few years of Isaac's life were truly the hardest. I needed a lot of help taking care of him and never ended up getting it.
I never knew what to wish for, besides a full-time, competent nurse. Its so sad that it never happened. As I look back I realize all of the mistakes I made. The guilt I feel knows no bounds. In order to live life the best I could, I had to care for him nonstop while attempting to get everything else done around him. I know that I spoke about how hard it was in front of him. I know that I had conversations over his head, or while he was sitting right next to me, about how hard it was to do all of his medical care.
The worst were the last 2 years of his life, when he had no teacher & very little therapy. I had so many phone calls and emails to send , so many things to take acre of. He had to put up with watching tv. I tried so hard to spend quality time with him, but I was split in a million different ways.
I never ever should have done that. Yes, he enjoyed what he was watching, and yes, I did manage to get some people to visit him instead of him just watching stuff. But it will never be enough and I can never make it up to him.
Covid was awful and wonderful at the same time. He enjoyed his little sister being home so much! We had fun doing art projects and having her put on wonderful shows for him. We had spa days and at-home crayola factory days. We went on trips to many parks. We got to spend time together. But there were also almost no therapists and I just couldn't possibly do it all. The guilt I would feel over not stretching him or massaging him enough was unbearable.
When I would light candles friday night I would beg g-d to do what was right for both Isaac & myself, for our family. He suffered so so so much every day. But he was also so happy. His smile truly lit up the world. His eye were illuminated from within. His kisses and love were all I needed to get through so many hard days and nights.
Now he is gone. I can't kiss him or hold him, or tell him that I would do anything for him.
My life has become before and after. Before, I had 2 amazing children who needed me every minute of every day. The only time I was ever apart from Chavie was when I gave birth to Isaac or when he was in the hospital. The only time I was ever apart from Isaac was when Chavie was in the hospital or I gave birth to Sara Ayelet. Other than that I never spent a night away from my children.
Now it has been 12 years since I've been with my Chavie, 9 months since Isaac. My life after kids with their level of needs is completely different. Yes, Sara Ayelet needs me & has her own challenges, and Covid has been horrific for us, but it's not the same.
I was outside with SA tonight and postponing bedtime to get to spend a little more time outside in the pleasant summer evening. Then I realized- I can come back outside after she goes to sleep. So here I am, sitting outside and enjoying the balmy night. But I can't really enjoy it because I don't have to listen for Isaac to see if he chokes, don't have to go in to him every 20 minutes to give him meds or wait till 1am to fill his feeding. I hate it.
I still can't go to sleep before 1. My body won't let me. I hear phantom feeding machines beeping at random times. I haven't checked my voicemail since October. There are no doctors leaving me messages, no government agencies trying to reach me. If SA's doctors need me they email mostly, and its not an emergency if I don't get right back to them.
Everywhere I go I am hyper-aware of places that aren't accessible. But it doesn't matter to me anymore. I can walk anywhere I want, park anywhere. But I don't want to be able to!! I would rather every one of those hardships just to have him back, just to see those eyes shining at me, full of love.
For so many many years I told myself that I'm making a yard sale to get rid of the huge accumulation of stuff in my house. There was just no way I could do it. Most of the stuff was shoved upstairs or downstairs. I could never get to those floors for more than a few minutes. Now I was able to spend time on those floors organizing. It still feels so strange, I'm just not used to going where I want to in my house. Most of the time I don't do it, because something pulls at me that I can't. Its a mental block.
So, I did it. I had a yard sale. I was out from 7am-9pm, setting up & cleaning up. SA was around, but didn't really need me. I didn't have to stop to suction, medicate, nebulize, feed, flush, change, and so much more.
How awful.
