Sunday, January 26, 2014

Papa

Roberts dad had a stroke yesterday. It was mild but they said it could have been much worse if he had not come quickly to the hospital. He has lost much of his vision and that is causing him a lot of anxiety. He is thinking that he is no good if he can't see and that this is the beginning of the end.
 I sat my kids down and told them. I told them it was not like mine and that Papa was okay. But they heard the word STROKE and they knew it was serious. I had to also tell them that it was not okay to joke about. That is a big difference for them because we joke about mine all the time. Jain doesn't even think of it as a joke when she calls me her stroke mama. It's just who I am.
I have always used humor to deal with things. If something is too serious to joke about then it must be awful. Laughing helps me know that either things are okay or they soon will be. For a while after my family learned that I had been abused, nobody joked about it. For a bit after my stroke it was the same.
For Roberts dad and all of us around him, it's much too soon for laughter. It's too raw.
But, at least for me, there came a time when the seriousness became like a dark cloud around me. It was almost scary. But let me be clear, some wounds are too deep to ever be joked about. But few things can relieve tension or dark clouds like a good laugh.
1.  skip was my dentist and eventually lost his dental license. Now whenever someone in my family needs a dentist, someone always tells us that they know somebody who will work cheap.
2.  Once as my therapist was helping me use my walker, she said the word hospital. It reminded me of a line from the movie "Airplane!" and I jut stopped in the middle of the hall and shook with laughter. The others around me had no idea about what I was laughing but they started to laugh because I looked and sounded so funny.
3.  When I was in the hospital and unable to speak, I finger spelled the word twice  to my mom and niece, Kaitlyn. Neither one of them could get it and they kept saying twiky? It was frustrating but also hilarious!

So no, now may not be appropriate to laugh or joke, but soon we will laugh again. Right now, though, Roberts mom and dad are in that awful first stage of...I don't even know how to explain. Fear? Unknown? Shock? Denial? A sliver of hope that you don't dare really focus on? And seeing Robert hurting just takes my breath away. He was out of town when he heard and hearing him cry over the phone was heart breaking. I wanted to reach through the phone to hug him. Please pray for him. Pray for us all.

Monday, January 20, 2014

Strokes are not funny

Today I was chatting with my mother-in-law about the people in her life who have had strokes and it made me realize once more just how many loved ones are hurt by them. Let me reiterate again (that redundancy was for my dad, one of his favorites) that there is NOTHING funny about a stroke. It kills, disables, and at the very least, scares the hell out of people. Not in the least bit funny.
That said, there are times when a good laugh is exactly what I need. As I have mentioned before, there are times when I can either cry or laugh. Take your pick. I'm not going to lie. At times I cry. A lot of times I cry. Sometimes I want to cry but I am just too busy or tired. But mostly, I choose to laugh. I mean, some things are just so absurd or ridiculous or whatever, that I really have no choice but to laugh. For example:
My cousins daughter asked her mom why Jodi talks like this, and then skewed her mouth up and only used one side. She is 3. No malice, only curiosity. How can I not laugh at the image of that?
My other cousins, Amy, has a son who has Autism and we often talk about the fact that people treat her son or me as if we are either made of glass or are contagious. Yesterday, her baby wanted a taste of my drink. Amy got him his own saying that she did not want him to share with me because he might catch my strokiness.
I recently tried playing an Xbox Kinect game with my kids You can imagine how that went.
Jain hates when I sing to her. Bedtime is fine but that is all. So I HAVE to do it to bug her.
See? Some things are just funny. Sick maybe, but still funny.
But the stroke itself? Not funny at all.
Having his mom talking about strokes made Robert start talking about some "highlights" of his memories. For example:
I was on a lot of blood thinners. Seriously, my blood was probably thinner than water. After calling him late at night to tell him I had stopped breathing so they had to put in a trach, they called him again to tell him they could not stop the bleeding from the incision. No wonder he still doesn't sleep well.
When my first feeding tube popped out, I was really nauseated, but throwing up was a problem because it could go into my trach and because I could not cough, I could aspirate and get Pneumonia. The lady in my room kept talking about the food they were serving or what candy she should get. My mom had nicely explained that I was very sick and we were doing everything (even sniffing alcohol wipes) to avoid throwing up, but she seemed incapable of shutting up. So I did some interesting finger gestures. I don't remember this and luckily there was a curtain between us, but Robert and my mom saw it. He still calls me his sailor wife.
I also flipped off a therapist who wanted me to get out of bed around this same time. That one I do remember. I could not talk and I was dizzy and sick. I did stand for her and even sat in a chair as she requested. Then my BP dropped and I remember my mom yelling for help and nurses running in and quite a bit of excited activity until I was stable. I stand by that particular gesture.
He also remembers my super fun stay in IMCU. My feeding tube had popped out of place so all my meds and food were just going randomly into my body. When they tried to place it again, they put it in my lung so another surgery was needed to move it. Then I developed an infection throughout my whole body (results of meds and food going everywhere) and they had to place a drain in my back to help drain some infected fluids. Then my stomach shut down completely. Robert asked when it might start working again and was told, "probably never". Then my muscle started to contract from lack of use, and my toe started to point down like a Barbie. That never got better and required yet another surgery to fix it. Visitors were very restricted and absolutely no kids were allowed. I was bored out of my mind but too sick to remedy that. I could not write or talk and not any of the night nurses knew sign.That was the longest 3 weeks!! 
But the nurses there were some of the best! They were kind and gentle and treated me like an actual person, not just a silent patient. We had many "Conversations" in which I learned about families, girlfriends, illnesses, accidents, etc. I never uttered a word but I felt very close to those nurses.
After reminiscing about the good old days, I needed some serious snuggle time with my critters. That and some Candy Crush Saga. Cleared another level today.
And for today: MLK

Monday, January 6, 2014

I'm Famous

It has been a long time since my last post. Really no excuses, I haven't even been super busy, just tired. Every time I look at my computer I just feel exhausted. I have been like this for weeks, only wanting to do the necessary activities and then reading or playing Legos with the kids or even just watching TV with Robert. I am thinking that a. I'm lazy b. It's winter and I just want to stay home and be warm c. The stroke is still causing general fatigue or d. I'm lazy. It's probably a combo.
Anyway, Christmas was really fun. Being sick in November and having nothing to do all day but shop on the computer really made the season a lot less stressful. The kids were thrilled with what Santa brought and loved hanging out with all the cousins. Like Robert says, someone sneezes and my whole family gets together.
We got real with Aleq. He was not at all surprised (school) and seemed to relish being in the know and helping where we needed him. Our  motto around here is don't ask questions around Christmas. Things may come in the mail or wrapped gifts from Grandma may appear under the tree, but we always refrain from too many questions. Aleq was a big help with this and never let any of us forget it.
Our 14th anniversary was on the 29th. We celebrated on the 28th with dinner at our favorite restaurant, the ever so fancy Red Iguana, with out good friends, Scott and Karen. I think Scott and Karen take us along so they can get good parking. The Handicapped space is directly in front of the door so we can just wait in the car for our name to be called. Even with the car off it's still warmer than standing outside. And after 14 years, Robert and I not only still really love each other, but we actually LIKE each other. We are a team. We have whole conversations that are nothing but movie lines or inside jokes and totally understand each other. We can be at church or the store or whatever and hear something and both burst out laughing or roll our eyes or just nod to each other because we both thought of the same thing. I still count the hours until he comes home from work and I always feel just a little happier knowing he is here, even if we are in different rooms. I'm glad families can be together forever.
New Years was again spent with my family but because most of the kids are little, the party ended at about 9 and at midnight all 3 kids were asleep and Robert and I paused our movie just long enough to wish one another Happy New Year. We could hear the fireworks and noise makers but I was just hoping the kids stayed asleep. How old and lame are we?  
Now the kids are back in school, Robert is working regular hours, and the house is quiet for about 3 hours a day (1/2 day kindergarten) and though I love them all and like when they get home, this is my time and I sure like it!!
Lastly, just today I got an email from the National Stroke Association that they published my story. I'm famous. Okay, not all that famous. It is on the NSA website and I'm not even totally sure of where on there I could find it, I just have a link. But it's as famous as I'll ever get so I'm taking it. The picture on there is exceptionally bad because I was only looking at thumbnails. Now that it's bigger...I HATE IT. But whatever, I'm published. Kinda. http://www.stroke.org/site/News2?news_iv_ctrl=-1&id=17853