I forget that people don’t really know the whole story. After my dad had a stroke he had brain surgery. There was swelling in his brain (Feb 9) and they took a piece of his skull and put it in his stomach. They put the skull in his stomach rather than freezing it because of the length of time they expected to have to wait for the swelling to go down. Now he will be having his second surgery on October 11th and this is where they will put the skull back together. He will FINALLY be able to take off that horribly uncomfortable helmet he was been wearing for months. This is where things begin to move toward big progress. He’s eating now by himself except at nights. He’s getting stronger.
TRIGGER WARNING: UM WTF
SO the last time I saw my father I saw this:
According to Tyshia, her and my brother had been going regularly while I recovered from my ankles. They went one day everything was fine and then the next they saw this. When she asked Huff he said “Accident”
Note: This was the hand that he can’t feel because of this stroke..still, though..
I saw my dad on May 31st.
Twas exciting. I didn’t expect to see him. I had been working for an internship all day and I thought it would be too late for me to go. It was a pleasant surprise
It was an eventful visit.
- I saw my father tired in a new way. He wasn’t groggy tired he was physically tired. He has been up all day and I could feel it in his hands. When I held his hands it was really really shaky and weak. Slowly it got stronger.
- While we show up at about 8 or 9, the nurse Ann (who is awesome and hilarious) mentioned some of the things they got him to do
- They got him out of the bed for a shower (he’s been in the bed for a while)
- The took off his (bed sore) wound vacuum. This is why he’s been in the bed for a while so he should be getting outside more
- He had some range of motion therapy
- He got a new bed. He said it was more comfortable. This means that they moved him around
- He was able to move his head more. He has a terrible helmet and has been put in a strange positions with many pillows so he is forced into many awkward head positions often.
- He does a tiny bit with his left hand (I’ll talk about that more later)
- Someone gave him chocolate. I have absolutely no idea who. I do know that I am not sure how i feel about that. I mean, he can’t swallow (so it must have been tiny bites). Well he’s still here so If he liked it yay.
- He couldn’t quite get it out but he told the nurse about a friend of his Tahnya who came by.
Writing here makes me feel better, and think more clearly, so I think I’ll be doing this more often. In fact I’m going to have another post tonight after this.
I saw my dad on the 26th . [And my brother is just now coming back from seeing him tonight] It was an extremely interesting experience. I went with my brother, my dad’s friend Tyshia and her son. Most of the time when I go see him there are either good moments or bad moments. There is either a focus on him physically or emotionally/mentally. It was a lot of everything.
When I walked in the room my dad the word “beautiful.” I didn’t believe it at first for many reason. One it was loud enough for me to see from the door clearly, two the syllables and three my dad is always the one who calls me out on my hair/clothing issues. (Note: I was wearing a shirt he bought me) After checking three times I was confirmed.
Thank you and yes are the phrases he uses the most often. He can’t quite get to saying “no” BUT when he doesn’t want something he makes some kind of facial expression, grabs hold of you (if it’s a physical problem) or says nothing for long enough for you to know he doesn’t want it and for it to get kind of awkward.
He didn’t do that so I realized he said that.
The other cool thing was that he seems to like the stuff I have put up in his room.
Him: Thank you (randomly)
Me: For what?
Me: The stuff on the wall?
Me: You like the stuff on the wall?
Me: I’m glad I’m going to be adding some more things in.
Other than that, one interesting thing happened with my Tyshia’s son and my father. He’s 5 and it’s strange (and I’ve said that) when he’s in there, because I KNOW I’m BARELY capable of handling it. I am the queen of holding in horrible moments and swallowing the pain long enough to survive them. I don’t know him well enough, but I do know that Huff likes him and that her son has a relationship with my father too.
Tyshia: Why don’t you say hi? Go over there and hold his hand.
Son: (holds hand for a second)
Me: Hey you remember Tyshia’s son. (My dad’s eyes were closed)
Son: Hi Huff! It’s me! Your best friend. Get better.
I’m pretty sure. Not definite. I’m pretty sure he moved his thumb on his RIGHT hand. His paralized hand. I saw it 3 times. The first time I wasn’t sure if it was his chest moving under the hand that made me think so, but I’m sure. At the same time I’m worried about his thumb because it is discolored (it looks like purple, black under the lights at night) . So I’m wondering what that means.
The bad stuff
They had to turn him twice. I can’t adequately describe it. But I can say this. He’s terrified, mostly naked and surrounded by two to four people.
It’s gotten easier.
But…it’s not gonna get easier than this. I’m in the room and I try to focus on how he’s doing. I look in his eyes. Tell him he’s doing okay. Meanwhile however I want to pass out.
People seem to think that saying “Well it has to happen.” Is helpful at all. They really don’t get it. Just think about it. You can’t feel half of your body and they half to turn you on both sides. So you feel like your falling or like your crushed. Everyone is staring at you. Your embarrassed. Your in pain because of bed sores. My issue with it has very little to do with my ability to handle it. People can’t hear him
The last thought I have about those moments is basically,
FUCK HE’S STRONG.
What happened on April 6th… Part 1
So that day was a big day. Some family (on my mother’s side) happened to be in NC so they went to see my father at the nursing home (Q got a chance to see them). (His nursing home is a little farther away from us, but that turned out to be a positive this time.) In therapy my dad was on those aerobic bikes. Then when I and my father’s best friend TG, got there we had him outside for a while. I’m not sure if he liked it or not because it was windy I do think he liked seeing outside. While out there we managed to find these weeds that were growing outside. (Other than that there were only a few other things.) I found a cup from one one the nurses and put the flowers in his room.
I hope to also dig up a little bit of the red clay that is outside and have me and huff paint with it…but more on that later
…Prepare for part two.
I haven’t posted in a while. Nothing new to report so it’s not a real update. Still working with the insurance trying to figure out what is going on. We figured out/have an idea what the problem is but sadly that doesn’t mean things are taken care of yet.
Me and Q are on the way to see my dad at the nursing home. I’m hoping that my dad is in the spirits to watch a movie. I’ve brought Cadillac Records for him to see. At some point I’ll write about how I trace so much of me and my father’s relationship to movies (and other visual arts). (It’s kinda why I write movie reviews). I’m sure the same is Q when it comes to music. (Probably why Q writes music reviews).
I hope it makes him happy.
- Huff Art Studio has an etsy! [Link]
- I’m gonna be in a student art show at my school
- I’m hoping to put together another show later in the month for a class. (Don’t quote me on that)
My brother has been on the phone forever and in the last two days we have gotten better news.
The insurance can cover my father (til June I believe). They just never knew about everything that happened with his stroke. They were told he was being treated by the nursing home from “diabetes and anemia” nothing about his stroke was given. SO if they had known none of this would be a problem. We found out just now that the insurance company never even knew about his surgery from is stroke. I.. am happy things are taken care of. If you know my brother call him or text him to let him know how much of a rock star he (and his friends are). While at the same time I am a little disgusted. I am seriously worried about all the people who don’t have lawyers in the family. All the people this happens to who don’t have contacts, or ideas, or support. How many people fall into the cracks. And will this be one less thing to worry about or will we get another crisis again?
I love long titles they are pretty amazing.
On Dreams and Stress …
Me and my brother are under so much stress right now with everything that is happening with my father that we are dreaming about it. Nothing needs to be interpreted we know whats up.
My dream was that my father died. Me and my father’s best friend were crying and all of a sudden he says Thank You. In my dream the hospital had said he was dead when he wasn’t. (YEAH, that’s how much stress the hospital has put us under)
My brothers dream was that he prosecuted my father, so my father could get health care in prison. (YEAH, that’s how much stress this insurance is putting us under. I personally like his, while both seem likely.)
On Surgery and Updates….
After my dad’s stroke he had to have a craniotomy. They took part of his skull and put it in his stomach. As they describe it his brain was swelling and they needed to relive pressure. ANYWAY, we talked to the surgeon and the surgery to put the skull back together may be coming soon. Can’t tell if it will be the day he told us for sure but if so it will be in weeks not months.
On Today and Love…..
I feel supported. From many directions. Don’t know what to make of that feeling during such a terrible time.
On Long Titles and The Future.
I love long titles and I love long posts. For that reason I am considering changing the blog format. Getting my thoughts out this way has been helpful, just thinking about a way to make that easier for me. Not sure if I will or not, just wanted to give notice if I decide.
I’m so tired. So much has happened. As my brother said (twice now) “All we want is normal abnormality.” Since I posted my father has been moved from his hospital to a nursing home. (That in and of itself is a story.) Now that he is at that nursing home (which is sadly farther out than we would like) he seems to be getting some decent care. The rehab is really nice. I met the people today. They get him outside and doing things. Unfortunately my dads insurance won’t pay for anymore days there. We are looking up other options (medicare/medicaid). Wondering what the next step is. Today was a long day.
- My dad had his stroke February 7th. It a monthiversery, I guess. Two days late but the nineth (in the morning) is when my father had his brain surgery so there are many things happening. Many moments I am re-living right now.
- My father used to know sign language “back in the day.” He has since lost it, but my whole life he has signed the alphabet. You may think this isn’t a big thing but it’s huge. The first day he went into the hospital me and his friend were trying to figure out what he wanted. I had an epiphany. SIGN IT! He signed (and later wrote) “P-U-L-L.” I have been thinking about ASL for his language for a while. The only word I could think of that requires one hand and would be helpful was I-LOVE-YOU. It’s in the picture above you. There is another sing for “I love you” but it requires two hands and it is also the sign for hug. I liked showing him this sign because if you know the ASL alphabet it’s very easy to remember. All you have to remember is I-L-Y. The day I taught him he didn’t actually do it. In his defense it was a little late and he was very tired. Yesterday I found out from a nurse that he kept doing that but she didn’t know what that meant. It was a fun thing to know he remembered it.
- Also he snapped his fingers yesterday. That’s something he has been doing too. I find it really kind of awesome. To me, it feels like he does that because he wants to try to get as much going in his brain as possible.
- There are more updates from a medical stand point that I will post soon but I wanted to remember the good things.