Day 3 of Hospice
Yesterday was the day we received the pending lab work that we had completed on Thursday night. They called during Shabbat and I will admit I answered the phone. They said everything I knew but didn't realize I needed to hear and everything we all knew aba needed to hear to have his “proof”. All your typical CBC, run of the mill labs were normal. You didn’t have an infection at all...in fact, your body DIDN'T even think it was stressed because you didn’t have your typical leukemoid reaction. Simply put, it all pointed to what my instincts had told me almost a week ago. It didn’t really make it any easier to digest, but it brought some order to the situation of the unknown.
We began to tell more people before we made it Facebook official. There were a few texts that needed to occur before we essentially let your Facebook followers know where your journey has headed. That was a hard post to type, but more difficult was reading the comments that followed. To be honest, I still to this day, a year later can’t bring myself to read them all. There are still private messages, phone calls, and text messages I haven’t responded to or even read. I just still can’t.
Today I started to pick and choose who would get what type of details and who would just get an overall update. It wasn’t meant to be mean, it was simply because this situation is a delicate one and people mean well, but people also feel they know best or that they have the answers. Someone always knows better or would do it differently. There were no answers. We did everything we could. We didn’t need people telling us there was more, or this is how they would or wouldn't do things when they had no clue what was really going on. We had always heard bonehead things be said throughout your life from people who meant well, and it is truly amazing just how comical some of the words and phrases are that come out of a persons mouth.
The majority if not all people who reached out to us offered prayers, thoughts, and tons of support. There were a few outliers who thankfully reached out to just close friends of ours and asked them the more ridiculous questions, or made the more ridiculous comments to them. We had people ask if we had consulted with a rabbi, or what a rabbi's thoughts were on the situation. I still don’t have a nice way of replying to some of the things people have and continue to say, so I just choose to not respond at all. Thankfully no one actually asked me to my face. To be honest, whether we did or did not speak to a rabbi is not a single person's business, but I will leave it out on the table that when I say we did everything we could for you, and that there was nothing more to do but support your body, we had the blessing of every doctor and orthodox rabbi with knowledge in the complex arena of pediatric care like yours.
Today you looked so much more like yourself. The swelling was nearly gone, and you received nebulizer treatments and lots of cuddles. Your Pedialyte was set to 20ml an hour and you were still coughing. Someone wise came to visit today and we turned off your feeding pump for a bit and you seemed to relax. Aba eventually turned it back on. We were in a silent battle with the pump, but I ultimately let him do what he needed. You had a day of so much love and important visitors. I took tons of pictures and videos today. I wish I had looked cuter myself, but as I said then and still do, considering the circumstances I guess it is what it is. Hospice of the Valley sent a photographer out to see you today. Aba took you to the pool, I couldn't go in, but I held your foot and there are pictures of me with you both. That pool was always your happy space. After you swam aba felt a huge wave of relief. His biggest fear was not being able to take you in the pool one more time. Until you lost joy in it, he took you in.
After your time in the pool, I wrapped you in your bunny rabbit towel outside on the grass. Your siblings all joined us and we would take our very last professional family pictures ever. I regret more than anything my at the time casual stance of embracing the moment as it was. I felt so vain for even considering we dress up or look cute. I wore a pretied scarf to cover my hair...I didn't even bother to try and look more than I felt. Your siblings made their usual complaints and sighs over smiling. I remember through gritted teeth I said "these are the last pictures we will have with your sister, so smile".
At times today, you were delirious. You would randomly smile...we wondered what you might be seeing. Today was the last day that you used oxygen. It would be the last time I would put the pulse oximeter on you and the last time I would use the numbers for any reassurance or information. You had started to be visibly annoyed by the oxygen tubing and our focus was your comfort, so we listened. It was scary.
Your life was hard, the last week was harder, but the final week with you would prove to be the hardest.