Liam's at home since last Saturday. She swings between periods pf feeling pretty well (but rarely excellent, like her old self) to periods where she's feeling not great, but not absolutely miserable either. When we first brought her home on Saturday she had a good day, but then a not-that-great night. Since then it sort of followed similar patterns. In Arabic the expression is "Yoom Asal Yoom Bassal" - One day honey, one day onion.
At home now, even though we have some nursing help, on the days we don't and after hours, Rachel is the nurse and the Dr and the tech and mom.
And, speaking of the devil....
It doesn't matter how many times I mentioned it already, I'm always finding my self amazed again at how well Rachel leads this entire war. She's the commander in chief who pulls all the strings together, but she's also a field officer who consult with the generals (Drs) on strategics; and she's also the foot soldier (nurse) who needs supplies and do the fighting. And above all she's mom. When times are tough she never gets tired. She pulls everybody with her: Liam, the Drs, nurses, and the rest of us. She tirelessly looking how to make things better.
And when things are a bit better, she doesn't let go. Most of us would stop to catch our breath. Not Rachel. She continues to move forward to the next target.
For example, when Liam finally felt better for a day or two, this is where I thought "let's stay here (at the hospital) until we see some stability." But Rachel was already moving on: we have to try and go home. When she said that she knew it will be double the work and the responsibility. I, the macho Israeli soldier, would pee in my pants out of fear in such situation. It's tough to take care of Liam at home. There's so much to know, so much to do, so much responsibility - not to mention just to be there for Liam when she's suffering (a full time job on its own). But Rachel's approach? Bring it on. Amazing.
Oy Vey, where did she come from?
Me: Meitav, I want you to know how proud of you I am. You matured a lot recently. You're taking care of yourself and you help us a lot.
Meitav: Thanks.
Me: Having said that, I'm letting you know that if the house is empty when you wake up, know that I went for a bike ride before it gets too hot.
Meitav: Ok, but please leave me a note.
Me: Here, I just told you. No note is necessary.
She, who inherited so much from me: No, no. Leave me a note that you left and that soon you'll be back and that you love me.
And then, with a tone and a look definitely not from my side of the family, she adds: AND DON'T FORGET THE "I LOVE YOU PART".
Philosophy and religion
October 2009 was an emotional roller-coaster month for me. Liam's ordeal was still pretty new and I was just coming out of a long unemployment period after a difficult separation from the company I loved working for. One day, while driving, I heard that Leonard Cohen is coming to the Fox. I needed little persuasion. As soon as the tickets became public, I was at the Fox box office to get two (but me being the frugal me and the tickets being sooooo expensive and the members snatching all the good ones, i ended up buying two for the balcony).
Now, I heard of LC before and I liked playing his music, but I was never crazy about him. Ok-plus is the grade he got. But the more I watched clips of the 75 years old on youtube, the more I wanted to see him live. I didn't go to a live concert in years. Was going now, when Liam is like that, the right time? The night of the concert came. Rachel could not join me as Liam just returned home after a shunt surgery (I think it was all a plot....Rachel tried to get out of this before...oh well). I sold the other ticket outside and went in.
I sat there in the top section, away from the stage, and near a bunch of strangers - all of whom were really nice. The concert started and for some reason I got so excited I got goosebumps. But something was missing - beside Rachel. I knew immediately what it was. My hawk eyes started scanning. And then I spotted him right below the stage: shiny head with a white T-shirt. At intermission I made my move. Are these seats next to you taken? No? Ok, thanks. (I call this procedure, which I also do in ball parks, the
"Asher D
O
W
Ngrade".)
The goosebumps I got upstairs were nothing compared with what I experienced in my new ($300) seats. I didn't think of anything but the music and the lyrics. I was completely taken. I think I was shaking out of emotions. I could tell you that it was Leonard's magical voice, and the capturing words, and the just incredible show altogether. And that might have been the case. Everything seemed to drain to a single point, a nipple: Liam's uncertain condition, getting a new job after the long layoff, Cohen's voice, and the classic Spanish guitar. It was amazing. My words can't explain what I felt there. I took extra caution in the 10 minutes drive home after the concert. My head was still spinning.
When I told Rachel what happened to me she said I went through a religious experience. The answer is better put in Cohen's own words: "I...studied the philosophies and the religions, but cheerfulness came breaking through."
(It's true though, that no experience is ever that wonderful if you have nobody to share it with. I remember the days that I used to windsurf. Even surfing in the perfect conditions, but alone, never matched sitting on the beach after a just-ok surf and sharing it with the other guys.)
Back to the present
Readers asked: (loosely translated from Hebrew)
Is life at home has any routine now? Is it back to "normal" somehow?
No. We don't know what routine life is for the past year - at least. Everything is dynamic all the time. Liam is in pain and Liam is asleep on her own schedule. Here's a piece of "routine" life for you (the Vilensky's reality show...live and in 3-D):
Morning. A knock on the door. A good neighbor brings Rachel a cup of coffee. The two are standing and chatting. Suddenly, sounds of vomiting coming from Liam's bed. Here, hold my coffee please - and she's on the run to help Liam. Then the conversation resumes from next to Liam. The suction hose in one hand, coffee in the other.
What does it really mean to care for Liam at home?
Hmmm, the $64M question. Not sure where to begin from. Here are some items which are easy to list:- Prepare medication at set times - including the middle of the night.
- Cath her several times a day - including the middle of the night.
- Change positions for Liam - including the middle of the night.
- Prepare her TPN ("food").
- Take her out of bed and into the wheelchair; and back to bed.
- Clean her up when needed (a short sentence that fails to describe the work involved).
- Keep in touch with Drs, nurses, medical equipment company, nurses provider, and a million other entities I have no idea who they are. It's a day job on it's own - no joke.
- Being mom. Spend half the night with Liam. 24x7x365.
But really, it doesn't matter how long or impressive the list might be. There's no way I can describe in words what it means to care for Liam. One has to experience it personally to fully understand it. Even some of our closest friends and family have no way of truly knowing what it's like.
Do you and Rachel have some time for yourself (biking, yoga, etc.)?
If there's a [reliable] nurse in the house, yes. Otherwise one of us has to be here at all times. Broken medical equipment
I discovered that ALL the weigh scales in the hospital - all of them without an exception - are broken. They all seem to show numbers too high. Strange....
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