it has been 6 weeks since Jay has been in the hospital. Obviously, this is an IMPOSSIBLE situation, that comes after several dramatic, traumatic, impossible situations. We have been living from one drama to another for YEARS.
So I would like to start with a very big disclaimer:
I hate asking for help. Self-sufficiency is the core of who I am. So when I do ask for help, it is under dire and extreme circumstances. I also loathe being pitied. Don’t pity me. I am not a refugee who fears my daughters being kidnapped by extremists. What we are going through is out-of-this-world difficult, but I really don’t need pity. I would also like to address why I write so publicly about what is going on: it’s practical. I have dear dear friends all over the world, and the internet is how we stay in touch. Sure, I could put this all in a secret blog or an email newsletter. But I don’t. I put out there for anyone to read. You don’t like it? You think I should keep these things private? That is totally fine. Stop reading.
OK, now that we got that out of the way, let me answer a few questions:
What is happening with Jay? Do they know what is wrong? Is there a plan for him to come home?
We will never really know what is going on. It’s a combination of the aspergillis infection, lung inflammation, a bad pneumonia and something that happens to his heart where it starts racing out of control. Managing all the different drugs requires very close monitoring which means daily blood tests and adjustments. And he is stil dependant on oxygen. He will be able to come home when 1) he does not need oxygen at rest (he could need it for walking, that would be ok) and 2) the meds he needs are stabilized. He may still need IV at home, we have done that a hundred times, but we cannot do it until it doesn’t need to be adjusted. So in the mean time, we wait. And no, there is no goal or set date. It’s a day-by-day situation that has had several set-backs so far.
How are you? I don’t know how you do it! You are amazing/strong/etc
Stop doing that. We have been over this before. I am not superwoman. I do it because I have no choice. I stopped working. My whole life revolves around trying to make this a livable situation for the girls. I even stopped going to see Jay every day because it was too hard. And feel a lot of guilt about that, because he deserves daily visits and help too. But it is in fact too much for me to handle. Some days, most days, pants are too hard to handle. Please know that just because you see me for 20 min and I’m chatting and I look like I got things under control, I don’t. I plan the entire day in my head around ‘being there’ for the girls. So while they are at school, there is a lot of crying and very long hot showers because while I am in there I don’t hear the dogs whining. See, NOT a superhero.
What can I do to help?
Here is the thing: I don’t know. I really really appreciate that you want to help. I really do. But the onus is on you to figure out what you can do to help. Trust me, when I need something, I make it known. I invite myself over to dinner, I pawn my kids off on friends with zero warning, I make their husbands come and change the lightbulbs so we don’t live in the dark. But most days, I can’t think of what I need. So if there is something you would like to do, by all means, offer. I may say no. Don’t take it personally. Sometimes it’s just the timing. My friend K asked me to go to the gym with her and I was super excited and I said yes. And then I went to put it in my calendar and realized it’s the day I take NJ to the hospital. I have been taking her EVERY WEEK since June and yet, in the moment, it skipped my mind.
Here, in no particular order, are notes on things that are helpful:
- weekend playdates. I love my kids. But I have ZERO energy to do anything besides knit and watch netflix. Which was fine for the first 5 weekends. But now, they are bored. Notice the THEY. Please remember that I have 2 lovely daughters. NJ is miss popular and gets many many invites, but SQ doesn’t have a large network of friends. I only know 2 of the parents at her new school (not so new). The school doesn’t use social media or email, so I can’t just send out an SOS. I would bet most of her friend’s parents have zero clue what is happening. So if you happen to be doing something fun one weekend, think of them.
- Spring break: NJ is off next week, SQ the first week of March. We have not planned anything because 1) they are not at the same time 2) it would be unthinkable to go away if Jay is in the hospital 3) if Jay is home they will obviously spend all their time playing board games and watching more netflix. So I am incapable of forward planning. If you are in town either of those weeks, think of us if you go to movies, indoor play spaces etc.
- Food: I won’t say no to meals. BUT, and I know this sounds terrible and I should just accept it as it comes, it is VERY helpful to have a heads up when food is coming. Because one day we got 3 piping hot meals at the same time. Sure we can freeze some, but sometimes we can’t. And it makes us feel bad when we don’t eat the hot piping meal someone just delivered. Also, if you want your containers back please put your name on them and then you need to remind me. Because if pants are hard, imagine what it’s like trying to return containers. I know I currently have 2 glass pyrex dishes, 1 metal soup pot and more tupperware than a sales lady. It’s all sitting in my mud room. If it’s yours, drop by one day and reclaim it. It sits there, judging me.
- Coffee/lunch/exercise: OK, this is the hardest one to write….. i would in fact enjoy adult conversation NOT in a hospital setting. Here is the problem: finding the time to do it in this crazy schedule. It’s really not easy. Most days I am running around back and forth to the hospital and to the pool so stopping for 20 min seems impossible. But I am human. And I do need to do *something* for myself at some point. So if you want to ask me to join you for coffee after drop off, or meet you at your gym, or come to my house to look at the bat-shit-crazy crafting I have been doing for the Bat Mitzvah, (heck, bring your kids to MY house on the weekend, we have a ping pong table!) please, email me or text me (don’t call me. you know how I feel about the phone). I can promise you that it will be next to impossible to make our schedules work. I will probably say yes and cancel, or say no several times. But please know that the fact that your asked me means a lot. And on the very off chance that we can make it work, it would be great.
- Helpful little things: a friend sent her husband over to bring food. When he got to my house he saw our stairs were icy, so before he left, he spread salt on them.
- VISIT JAY: I cannot say this one enough. I know the hospital in in the godforsaken east end and there is no accidental way to be there on the way to or from something. But the poor man has been in the hospital for SIX weeks. he is also reachable by cell phone and email. So you don’t need to contact me to get to him. the only time that is not a good time is Sunday at dinner, because that is when the girls get to see him.
Finally, THANK YOU. I know that our family asks way to much of our community and our friends. Trust me, I lay awake at night with anxiety over what a burden we are to those close to us. Every single kindness that has been given to us is GREATLY appreciated, more than you will ever know.