Wednesday, May 9, 2012

Coma anniversary, five years later, 2012.

I slept 23 hours. Not straight, but only with bathroom stops and a few words to my husband here or there.
I had some pretty out-there, weird dreams.
From 5:30 yesterday afternoon until 3:30 this afternoon. And boy, do I feel sick. Some sort of bug has come upon me.
I have been fighting it for a few days, thinking that I am "just" exhausted, but since I couldn't come up with a good reason why, I didn't really take it seriously. I also had a migraine off and on for a few days. So, finally after making lists of evening happenings and what to cook for dinner for the new babysitter, and labeling pots for what is to be cooked in them, I finally went to bed. And there I stayed for 23 hours. It is also where I returned to after not-so-long of being awake.

Of course, I have various pains and nerve issues so that when I am sick, and they get stronger, I feel that I have a crazy infection again and I need to go to the hospital. Like right now, for instance... I have a sore throat and a strong pain in my thigh muscle. I am fighting my brain not to jump to thinking that it is cellulitis, which I had a few months after I had NF. It is an infection of deep tissue, which, if left untreated, can turn into NF. I am having pain in the back of my thigh, which is a new pain. I am chalking it up to "today's nerve pain", but in the back of my head I think that it could be something that could kill me. That happens to me a lot- I get sick with something or other, or get a localized infection of some cut, and I *always* have it in the back of my head that this may kill me. I think this is common amongst NF survivors (right guys?). It does something to one's psyche after coming out of something like that. Well, I am not sure if there are other things that come under the title of "something like that"... it is Necrotizing Fasciitis... there are no other "something like that"'s.

So here I am in bed with an unusual pain, a low fever, feeling quite ill, and hoping I don't have cellulitis. I'll bet that if *you* felt what I feel, you would just be bummed out and wait for it to pass. I know too much for that. And starting from exactly five years ago, I am paranoid about crazy, rare diseases. Because if you're me, they aren't rare.

So did you catch that up there when I spoke of the *new* babysitter? Yeah, well, good help is hard to find.
After months of strange occurrences around the house, and things disappearing, when no other possibility existed, we had to come to the impossible conclusion that our babysitter was taking things from us. It took us so long to put things together because it was so improbable that she would do such a thing. She has worked for us on-and-off for three years. We had a deep trust with her, and the kids love her.

We had to let her go. She denied everything, but there were holes in her innocence. We *know* she did it, the question remains- how could she do that to us?

So, thankfully a friend gave us the number of someone they had been using, and I called her. She came right over the next day, and has come a few days since then. She still doesn't know the kitchen well, so that is why, in order for me to go to sleep early, I had to label everything and make lists. She is more than happy to follow instructions, and I am very comfortable with her. I think the kids are fine with her, too. She is Brittish, so it's nice to have English around the house more. She knows much of my story, and she was a nurse in England, so I feel she understands when I need to go rest. Let's pray for the best!

In the meantime, Robert & I have to get over the feeling of being violated and taken advantage of by the previous babysitter.

Mostly, it brings it back to us that we would rather have a life which doesn't need babysitters daily. A life where we are the only ones taking care of our children. I know that this is what the children want, also.

I wish that, too. I wish I could take care of my children myself every day. But I can't, and that is just the way it is. I have had seven surgeries in five years. I am left with all kinds of complications, and I need help. It is what it is.

Today, the holiday of Lag B'omer, is the anniversary of the day I woke up from the coma. I cried about that this evening. Each year the anniversary rolls around, and I think that it won't blindside me. Then the night comes, the holiday is celebrated with bonfires all over the country, and I cry.

My mind does flips and somersaults with thoughts. At once thinking about that doctor who made the mistakes that got me so sick in the first place; then trying to fix that with more spiritual thoughts as to why I am here- that Hashem makes all the decisions. Those flips happen lots. From victim to humble spiritual servant.

Now I need to go back to sleep. My throat hurts and I am exhausted... I've been up for 6 hours, after all! But first I'll call my mother's nursing home...

Oh, my mom. She speaks only one or two words at a time, and is generally depressed. My poor mommy. It is so hard to fight. She is in such a hard place right now-- she got away from death's door, from an infection, and now she has to *work* to get her life back. She cannot get herself out of bed. She needs LOTS of physical therapy, and it is hard work that I am not sure she wants to do. It is so daunting. I understand that. But me, I had small kids to get back to. Even with that, I went into a deep depression after being in the ICU. ICU changes people. It is a known phenomenon. I got out of it because I was young and healthy. Will she get out of it? Please Gd.


  1. Just hang in there! Missed you tonight. Your daughter was so tired she fell asleep sitting on the chair, but Azriel was having the time of his life, running madly around the bonfire and hurling fresh wood onto it. Dov helped the younger ones burn marshmallows. (They may tell you they were roasted, but..)

  2. We're all shaped by our experiences, and yours are beyond anything most of us can imagine. While the anniversary naturally brings back the sadness and the shock, it's also the day you reentered the land of the living.

    One day your children will read this blog -- and hopefully your book -- and will realize just how hard you've fought to stay alive and be the very best mom you could be (which is a whole lot better than many of us!).