Simon was going to sleep tonight, it was later than usual and we were both feeling spent from the day. I feel him finally begin to settle with the big twitches transitioning to little twitches and finally he moves his body one last time before the deep breathing begins.
I slowly begin to prepare to leave the twin hospital bed that we share for the going to bed ritual when I see in the dimly lit room that he is in the position. I feel a wave of images and terror wash over me. He's lying there with both his arms raised over his head, breathing deeply, rib cage exposed. Because of the position, he looks almost like an infant again. Like he did before he was diagnosed. All I can think of is that time in the hospital when we went in thinking it was pneumonia, got the news that it was his heart and waited for what was coming next. An unimaginable next.
Aaah, the real bits of PTSD. I have pain between my eyes. My shoulders feel itchy from the inside. I want to cry and vomit all at once and my instinct is to lie spooning him as tightly as I can.
Instead I'll type on this stupid iPad keyboard and tell you how our day went and pray that some sort of sleep comes tonight so I can get through tomorrow until Jaime comes for the weekend.
The bummer is that I think we can't have visitors. The clinicians gave me the go ahead to try it out but warned me that it might be more difficult for Simon than not and could be detrimental to his three week stay. We had a visitor Tuesday and I didn't think much of it when the late night snack and bedtime seemed difficult. It was only the second night, and surely things were still so new, that it made sense.
Tonight when my sister and family arrived, I thought I had planned it out so well terms of timing. We could have a little visit, all go to Turtle Time, split up for dinner and then have some playtime before bed. No problem.
*imagine me shooting myself in the head here with my middle finger*
We had the hardest dinner, even more difficult last snack and most challenging bedtime we've had in years.
So, I think no more visitors for a while. We might be able to try again during week three. I don't think I can handle the disruption and I don't think it's worth it for folks to come for the 20 to 30 minutes that would be our limit.
How the fuck do you do this?
I miss people. I miss Jaime. I miss shared meals and fresh air and the outside world. I know it's three weeks and have no doubt that I can do this, that Simon and I can do this. Holy hell it's hard.
I actually think that the team might know best when they say that it's preferable to just kind hunker down, nose to grindstone, and bring it in to a keyhole focus.
I want to talk about Nelson Mandela and who he was and is for me in the world. I wanted to talk with my sister in real and deep ways. I wanted to connect with my niece and nephew that I don't see enough. I want to invite local peeps to come again and again. I want to take folks up on their offers to help/support/give respite.
It's too disruptive. It sets both Simon and I up for something that's two and a half weeks away. It takes our focus off the task at hand.
The truth is that we are up to the task. We are working this program hard and learning so much from session to session. It's not that long either. It's already Thursday night and Jaime is coming tomorrow evening for the weekend.
Simon is changing from meal to meal and has started to gain back some of the weight that he lost in the first couple of days. He is eating foods that were previously to difficult for him and taking more and more spoonfuls and forkfuls by himself every meal.
His connections to individual team members are amazing to watch and as much as I struggle with him struggling, there are more successes in each moment than not. Each day feels like a week but then I can also see the growth in those days is also equal to a weeks worth of work.
Ok, getting punchy and I think the Advil PM is starting to work its magic.
"Everybody's working for the weekend" is starting to play in my head.
Here's to one more day before a break.
I slowly begin to prepare to leave the twin hospital bed that we share for the going to bed ritual when I see in the dimly lit room that he is in the position. I feel a wave of images and terror wash over me. He's lying there with both his arms raised over his head, breathing deeply, rib cage exposed. Because of the position, he looks almost like an infant again. Like he did before he was diagnosed. All I can think of is that time in the hospital when we went in thinking it was pneumonia, got the news that it was his heart and waited for what was coming next. An unimaginable next.
Aaah, the real bits of PTSD. I have pain between my eyes. My shoulders feel itchy from the inside. I want to cry and vomit all at once and my instinct is to lie spooning him as tightly as I can.
Instead I'll type on this stupid iPad keyboard and tell you how our day went and pray that some sort of sleep comes tonight so I can get through tomorrow until Jaime comes for the weekend.
The bummer is that I think we can't have visitors. The clinicians gave me the go ahead to try it out but warned me that it might be more difficult for Simon than not and could be detrimental to his three week stay. We had a visitor Tuesday and I didn't think much of it when the late night snack and bedtime seemed difficult. It was only the second night, and surely things were still so new, that it made sense.
Tonight when my sister and family arrived, I thought I had planned it out so well terms of timing. We could have a little visit, all go to Turtle Time, split up for dinner and then have some playtime before bed. No problem.
*imagine me shooting myself in the head here with my middle finger*
We had the hardest dinner, even more difficult last snack and most challenging bedtime we've had in years.
So, I think no more visitors for a while. We might be able to try again during week three. I don't think I can handle the disruption and I don't think it's worth it for folks to come for the 20 to 30 minutes that would be our limit.
How the fuck do you do this?
I miss people. I miss Jaime. I miss shared meals and fresh air and the outside world. I know it's three weeks and have no doubt that I can do this, that Simon and I can do this. Holy hell it's hard.
I actually think that the team might know best when they say that it's preferable to just kind hunker down, nose to grindstone, and bring it in to a keyhole focus.
I want to talk about Nelson Mandela and who he was and is for me in the world. I wanted to talk with my sister in real and deep ways. I wanted to connect with my niece and nephew that I don't see enough. I want to invite local peeps to come again and again. I want to take folks up on their offers to help/support/give respite.
It's too disruptive. It sets both Simon and I up for something that's two and a half weeks away. It takes our focus off the task at hand.
The truth is that we are up to the task. We are working this program hard and learning so much from session to session. It's not that long either. It's already Thursday night and Jaime is coming tomorrow evening for the weekend.
Simon is changing from meal to meal and has started to gain back some of the weight that he lost in the first couple of days. He is eating foods that were previously to difficult for him and taking more and more spoonfuls and forkfuls by himself every meal.
His connections to individual team members are amazing to watch and as much as I struggle with him struggling, there are more successes in each moment than not. Each day feels like a week but then I can also see the growth in those days is also equal to a weeks worth of work.
Ok, getting punchy and I think the Advil PM is starting to work its magic.
"Everybody's working for the weekend" is starting to play in my head.
Here's to one more day before a break.
 |
| Where's Simon? |
 |
| There he is! |
 |
| See, it's like THIS, Minnie |
 |
| May I have this dance? |
 |
| And promenade... |
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| Thank you dahling. You're mahvelous! |
 |
| Help me! |
2 comments:
I love you. Yes you can!
(PS - Tell Disney they can't have him!)
I adore you cuz. You and Jaime and the Shimster personify grace, resiliency, spirit, and love in ways that most of us can't even imagine.
You will get through this and you will demonstrate, once again, the strength and devotion that you've always shown, and that you've inspired so many other people with. Zay geszundt!
(and if that doesn't work, we can share fart jokes. It's a fitch/chrom thing.
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