Day Two

Today was a hard day and today was a good day. She was having a lot of trouble with bladder pain and she cried a lot, but she also stood up for the first time, with help of course. They took a urine sample and we should know by tomorrow at the latest, if she has a bladder infection. I was having a tough time with Toelle's concept of "complete acceptance of what is" in regards to this. She had the breathing tube in for so long that she developed pneumonia. She has had severe diarrhea. She has always had great trouble with back pain and after lying in bed for two weeks she moans all day and shifts around trying to get comfortable to no avail. And now her bladder. She just can't seem to win. She is already struggling trying to understand what is happening to her, trying communicate with us, feeling afraid and confused. I want to scream "Please God help her to feel comfortable!" I was able to stay in the room today during her physical therapy session. It was incredible to watch, to say the least. She lost her focus on and off throughout the session, but they did a remarkable job keeping her on track. She followed many of commands, but she is still not following them consistently which is why she will go to sub-acute rehab as opposed to acute and stay at Sparrow (unless we choose to send her to Origami - if Mom and Dad's insurance will cover it). When she would lose focus and they would get her attention again, she would sit straight up, say "Oooo kay", and put all of her attention on them with this determined look in her eyes that said "I am going to do this...I CAN do this". Sometimes she was able to do it and sometimes not, but it was a wonderful feeling to see that determination in her eyes. Watching her stand was a remarkable feeling as well. I can only imagine how good it felt after lying in that bed for so long. She was doing so well that her weepiness took my by surprise. Today was, by far, the hardest she's cried. She told us over and over again that she was so afraid and scared. We kept telling her everything is going to be OK, that this is only temporary, but she was having a tough time fighting the tears. At one point she said "I'm sorry, Lori, I'm so sorry" and my heart could hardly take it. Of course I told her there was nothing to be sorry for and that she was doing so well and would continue to get better every single day, but she couldn't shake it. Finally she stopped, took a deep breath, sighed it out, and gave us a look that said nothing short of "I will fight this and I will win." It was an incredible moment. Later she pumped her first, determined and said "I'm going to chop the process". She was able to maintain that for awhile, but by the end of the day she was just so tired. She needed to sleep, but stayed awake for a long time struggling to talk to us and getting frustrated because we didn't understand. Her aphasia is always worse when she is tired. To say it was difficult to watch, is an understatement. But still, it was a good day. A week ago she was lying in bed with the breathing tube in and would only open her eyes for a moment or two, let alone move the right side of her body. Today she got out of bed and stood up. I think today she was the most articulate she's been so far. I had been talking to Dad about ordering some dinner, but I kept putting it off. About an hour passed and I still hadn't called to place the order and out of the blue Mom said "Lori, order your dinner." At the end of the day, when she finally laid down to go to sleep, I was sitting by her side and she reached over to brush my hair away from my face and said something that clearly meant I should go home and get some sleep, even though I couldn't quite make out the words. I think my favorite moment was when I started to sing "Once there was a little old ant..." and she said "Nah, screw it, screw the ant". I asked her "Screw the ant, huh? You're going to do better than the ant? You're going to kick the ant's butt?" "Yeah" she said. It was so cute. I am pretty sure that she is the cutest, sweetest thing I've ever seen.

Day One

Hemorrhagic Stroke
Cerebral Amyloid Angiopathy
Global Aphasia

It's hard to believe that two weeks ago these were words that would never even cross my mind, and now they are all I can think about. I can hardly believe that exactly two weeks ago today, at this time, I was standing at my mother's side in the emergency room at Sparrow hospital, watching as she suffered a hemorrhagic stroke. I can't really describe what I was thinking, what was going through my mind. I didn't have time to think as it was all happening so fast. It's funny how sometimes you just know something isn't right. Even though I wanted to believe it was a migraine or a pinched nerve, deep down I knew what it really was. She knew too. She told me in the car on the way to the hospital. "I have a brain aneurysm", she said, "I think I am having a stroke". Even though I was very calm on the outside, I was shaking with fear on the inside. Somehow, I think I was more afraid than she was. She told me "It's OK. If I'm going, I am in the hands of God". In the hands of God. I believe, more than I ever thought I could, that my mother was and is still now, in the hands of God. Everything progressed pretty quickly. One minute she was able to talk, to communicate with the doctors and nurses, to follow commands, to know who I was. The next minute she forgot where she was, had difficulty understanding what she was being asked to do, and had trouble getting her thoughts out. I remember distinctly the moment I realized she could understand, but couldn't say it. I asked her to say my name. "ooo eee...oo eeee", then a sigh and a drop of the head. I said to her "It's frustrating, isn't it Mom?" and she replied "Yes, yes it is." When Dad arrived, she knew instantly it was him. She turned to him, smiled, and said "Hi". I asked her "Can you say our names?" and she replied, after concentrating and struggling, "It's a secret agreement". When her friend Barb was standing by her side she clearly was trying to share a thought with her. She took her time, thought hard, and said "It came upon me like a possum". It's funny how I felt like I knew just what she meant. I responded, "It happened all of a sudden? Is that what you mean, Mom?" She said yes, it was what she meant. There's no way to know if that really is what she meant. It is frustrating and painful to watch someone you love struggle to communicate with you. In just two weeks time, however, she is alive and awake and trying to communicate. That in itself is remarkable and so I'll take it. For now. We have done a lot of waiting. Waiting for her to make it through brain surgery alive. She did. Waiting for her to wake up. She did. Waiting for the breathing tube to come out so she can breathe on her own. She is. Waiting for her to move the right side of her body. She has. And waiting for her to talk to us. Boy is she ever. When she is awake, that is all she does. That mind of hers is working non-stop to figure things out. She started speaking less than a week ago and she can already say all of our names and tell us that she loves us. It comes and goes, sure. There are moments when we aren't certain that she knows who we are and when we get no response to "I love you Mom", but there are also many moments where we do. The swelling is completely gone in her right hand. She can lift it all the way to her chest and she can move her fingers. She sings with me a lot. Sometimes she can say a few of the right words and sometimes not. Sometimes she will sing on her own, her own version of "This Little Light of Mine": "Me oh ine...I oh my ine". Listening to her sing is one of the sweetest sounds I have ever heard. She says a lot of things that we simply just don't understand. Sometimes she answers "no" to a question and then will turn around and answer "yes", and sometimes it is so clear to us that she has understood. At times, she will speak perfectly clear, letting us know she wants to sit up or is tired or her back hurts. At times, we have no idea what she is trying to say and it breaks our hearts to watch her struggle. She will burst out with perfectly clear sentences like "Dag Gummit" (one of her favorites) or "I am pissed!" or "Dang it, Gerald!" or "No, Lori, I want up" and will turn around and will say things that make absolutely no sense like she did in the emergency room that day. And oh man, she will say things that make us laugh. Yesterday when my brother was talking to Samuel and said "Grandma" she said "No grandma! Nana!" We all burst out laughing. The boys have never called her grandma and apparently she likes it that way. She will tell us she'll get better and agree with us when we say everything will be OK, and there are times when she will weep and shake her head "No!" in fear when we tell her this is only temporary. One minute we are hopeful, the next fearful. Each hour is filled with ups and downs. Yesterday, when I first arrived, she didn't react much when she saw me. She was sitting up in the chair; back hurting and determined to stand up. She was playing with the blanket, curious and confused, and I didn't understand most of what she said. We took her down the hall to look out the window and she cried when we told her she was strong, and a fighter, and that every day she was getting better. By the time we had gotten back to the room she was already saying all of our names. I showed her the cards the boys made for her and it really seemed like she understood. Later, my sister brought the boys in, and her whole face lit up. When they said their good byes and hugged her, she put her arms around them and said "Oh Sweetie, I love you too" and kissed the top of their heads. It was the most beautiful moment of my life. We met two speech therapists yesterday who will be helping her with her aphasia. I was comforted by their determination. I have been a bit ashamed that I have allowed myself to feel defeated at times. Going back to work, having more time away, has made me more fearful. Meeting the speech therapists and knowing they will do all they can, that they will fight and won't give up, has made me more determined. They say that after a year you own your injury and we will never get her back 100%. Well then, for the next 365 days we will fight for 99%. I miss her. It's hard to believe you can miss someone so much when they are sitting right in front of you. I have learned a lot about life in the last several years. The most significant thing I've learned is how essential it is to live in the moment. Not just when life is going just as you hoped it would, but even more so when you're going through the toughest time in your life. When I sit by her side, I will be present with her in that moment. I won't think about the way she was or what she will be. I will simply cherish who she is at that moment. This is what will allow me to celebrate every teeny tiny baby step. This is what will allow me to remain hopeful. I will fill each moment with prayers and hope and light and love. And I'll do it one moment at a time. Even if every moment feels like an eternity.

I like that.

I like the color peach even though it does nothing for my skin tone. I like the sound it makes when leather and skin meet, as you slip on a high heel. And I like that I wear them even though they hurt my feet. I don't mind cloudy days, or snowy or rainy days; they just make me appreciate things that are far beyond my simple mind, like the change of seasons, the grass and trees, the rain, wind, snow, and sky above me. And I don't care if I should or shouldn't have started this sentence with an "and" or if the use of a semi-colon in the previous sentence was considered incorrect grammer. Or if it had too many commas. I just love words and how neat, yeah NEAT, super cool, it is to watch them move around, shift to the right or left, or in replace of one another, to express and communicate a thought or a feeling. I like the picture I took recently of a glass bluebird of happiness sitting on a window sill, looking out through a heart-shaped-condensation-streaked window at a lightly brushed snowy ground on the first day of spring. It is my "favorite picture I've ever taken" and yes, I have many of these and will have many more, all at the same time, which really isn't possible, but that's ok by me. When I like something, really like something, I say it is my favorite because I am someone who feels things with such an intensity that I'll just burst if it doesn't find a way out. So it's "my favorite" and "the best ever" and "I just love this or that or him or her so much". And I like that. I like that I tell people how I feel; that I am not afraid to tell someone that I like their shirt, ask them if they are ok today, let them know I was thinking about them, tell them that I love them or just how wonderful they made me feel. And that I choose to say bold things, things that are scary, things that people tend to think are "too weird" or "unnecessary". And I like that I think about what I've said and wonder sometimes if it was ok that I did; it means that I care about people's feelings and consider them. All the time. And I like that. I like that although I promised myself I wouldn't buy another white shirt because I have far too many already, that I bought one anyway just because it has butterfiles on it, they were pretty, and putting it on made me feel pretty. I like that I don't just listen to music. I think about the words; look them up, memorize them, and think about what they mean. And that when I listen to a song I love I want to share it with others, send them the words so they'll know just why "it's my favorite song" or why I thought it was something that might speak to them. I like how close I am to my family. I like shades of blue and peach, but mostly white and grey and beige. I like that I love scary movies, but I close my eyes during the gorey parts and fall asleep before the end. I like the smell of clothes that just came out of the dryer. I like cheap, tacky earrings, leather bracelets, and wearing a lot of mascara. I like sweat pants, wearing my hair in a ponytail, wearing yesterday's make up or no make up at all. I like that I say "I did it" when I accomplished a fairly-difficult task, and that I say it outloud to myself and to strangers. I like the sound of my nephews laughing. I like the look on my neice's face, when we haven't seen each other in awhile, as she walks through the door and catches my eye. I like walking, exercising, eating healthy, drinking water, and getting enough sleep. I like sitting, watching movies or tv, being lazy, eating burgers and fries, drinking beer, and staying up too late. I like my cats. I like the outdoors, swimming, camping, hiking, riding my bike. I like video games, card games, board games. I like challenging myself, every day, to be a better person. I like who I was, who I am, and who I will be. And I like that I don't just like all of these things - I love them with every fiber of my being.

Christmas On the Couch

I have been sitting on the couch a lot lately. Practically all day long for the last nine days, to be exact. This is not my usual choice of activity. I have often found myself saying to others that I am a reasonably active person who does not like to sit on the couch for too long; someone who finds a lot of joy in walking, doing something active with my time, being up and on my feet out there enjoying the world. I would hear myself say that and think it a bit too "sef-aware" and probably not quite as true as I thought. Having surgery has proven me wrong. I am longing for something to do...on my feet. I want to go for a walk, to reorganize my bedroom, to work out, to go into town and take my time picking out my groceries, find a good movie to rent, anything really. I am recovering well, but it's tough to sit and sit, get up for a bit and then...sit. Although it may feel like a slow process as soon as I know it I will be up and out and about.

Christmas was interesting. I sat on the couch in the livingroom the whole time. I found this to be tough mainly during meal-time. It was a bit of a downer to sit in the other room and hear them all in the kitchen holding hands and saying grace together. At the same time, though, there was something to be said about sitting on the sidelines; to have the opportunity to see things from a different perspective. I saw a big, loud, expressive, interesting, and fun group of people laughing, loving, and enjoying one another. It was a good feeling. A really good feeling. I watched my almost 3 yr old nephew Samuel run back and forth and back and forth from the play room to the living room saying "Help me! Jeffey chasing me! Help me! Monster House scary!" I saw everyone helping each other cook, getting each other drinks, hugging, talking, and just being together. I watched my nephews playing with their new toys absorbed in the magical world of their imagination. I saw my neice sit in her own little corner and read a book from start to finish in a day or two like she loves to do, but doesn't always get the chance to because she works so hard in school. I loved just sitting back and watching. One by one, in their own tme, they would come up to me and ask how I was, if I needed anything, how I was feeling, or just to talk and spend some time with me. Johnny came up to me at one point and asked me why the dr's "cut me". I explained about the tumors and how they had to take them out of my uterus and asked him if he knew what a uterus was. Naturally he said no so I briefly explained it's purpose. His response? "Will you still be able to have babies Auntie?" I told him that was my hope. He said he hoped so too. He hoped I would have a baby some day so he could play with it and that it would be the smallest baby he had ever seen. How sweet; how heart-breakingly sweet. The boys were so careful with me and gentle. They would give me a kiss and tell me they loved me and then just stare at me for a bit with a pained expression as they looked down at my tummy. What loving, sweet little boys. I sat there watching them play and laugh and run around the house and couldn't believe how much they have grown. They really do grow up so fast and I feel glad that I had the chance to just sit back and watch. Normally I am a bit quieter than the rest of the family, more of an outsider. But this was the first time that I truly "sat out", the first time I just listened and took them all in with nothing but appreciation in my heart. I simply let them be. And although I was hurting and tired and wishing I could get up and get in the thick of it, I am thankful I got the chance not to. It was a Christmas I will never forget.

Maybe just poke them with kindness...

When you feel like someone is doing all they can to hurt you or take something away from you, wouldn't it feel so wonderful to turn and say whatever is on your mind? To say just the thing that will put them in their place? Unfortunately, for me, I have recently discovered the answer is "No". I have never been in this position before. I have been hurt many times in my life, where someone "tried to take me out" and for whatever reason, I usually felt isolated. I felt like no one was on my side; I was the outcast who was left to suffer on my own while everyone supported that very person who had hurt me. I remember wanting everyone to walk straight up to them and tell them that what they were doing was wrong; to not talk to them anymore or fire them or stop being their friend. It has happened again. Someone is out to get me. And this time? I have everyone on my side. Just what I've always wanted, right? Wouldn't it feel great if everyone just stopped talking to her? If she was told she would lose her job if she didn't shape up? And if I just turned to her and said "Ha! No one agrees with what you've done and you are going down! I hope you get just what you deserve!" No, no, and no. I had a moment yesterday, a brief moment where I wanted to say it. But I didn't, and I won't. I used to love the phrase "kill 'em with kindness". Now, when I think of that phrase, it means something very different to me. When someone is trying to hurt you, surely they must have had a lot of pain and sadness in their life to feel jealousy and angry so strongly that they would go so far as to try to snatch happiness away from someone else at whatever the cost. Instead of lashing out, send them some love and hope they find happiness in their life so they won't feel the need to take it from others. Instead of killing them with kindness, shower them with love. This is what I know I should do and what I will do. It doesn't mean I have to forget about myself and my own needs in the process. But what would it hurt to just love her anyway? To hope that she finds all she is looking for, whatever would make her happy, and at the same time not allow her to take mine away from me? But, there is that part of me (hmmm...I wonder what part that is? Oh hello Mr. Ego, why is it again that you EXIST?) that says "Why does she deserve that? She isn't a nice person! She is trying to hurt you! Give her what she deserves!" But what purpose would that serve? It would only make matters worse; she would be even more angry and I would feel nothing but guilt, not a feeling of justice being served. So when she skips around the office whistling to herself as she hangs on to the hope that she will be able to stop me from enjoying my new position, I will just take a deep breath and let it roll off my back. I will be civil and kind, focus on taking care of tying up loose ends here at work before I go, and hope that she finds happiness some day because she deserves it just as much as I do. God loves her just as much as he loves me. "That's hard to believe!" Shhh..ego...shhhh......quiet now.

It is fascinating to me how much life has to do with balance. I heard once that someone asked the Dali Lama what the key to happiness was and he responded with just one word: "Balance". I can't tell you how much I believe that to be true. What made me think about that today? Well, I took the day off to do...what? Well, nothing really. I just wanted a day to myself. Kind of funny, actually, as I used to hate so desperately to be alone. Then? Then, all I wanted to do was to spend all of my time alone. And now? You guessed it, a little bit of both, thank you very much. Balance. I was able to sleep in today. So nice. Usually the sun is up and I am up. It just doesn't feel right to me, I guess, to sleep the day away. Sure enough 7:30 hit and, eyes wide, I sat up in bed. I decided to give it a shot and got back under the covers. I laid there, sort of just enjoying the quiet stillness, and to my surprise drifted back off to sleep. It wasn't until about 10 minutes until 9:00 that I woke again. Feeling nice and rested, I got up and headed straight for the coffee pot. What to do with my day? Naturally, I went straight to facebook, then on to youtube to get a Gavin fix. After checking emails, seeing what was going on in the world, and playing with the cats; I moved on to things I don't get the chance to do very often. Laying in the bathtub and reading; plucking my eyebrows, shaving my legs, painting my toes. You know, girl things. I am a girl, just in case you hadn't noticed, but have never been a "girly-girl". I like to look nice; wear make up, put on some high heels, a sexy shirt and some tight jeans. But, I am also comfortable in my knee length slippers, baggy sweater, sweat pants, with no make up on and my hair in a pony tail. What do I feel my best in? Somewhere in between there. I started to work on my eyebrows and found myself taking a good, long look at my face and thought "What happened? Where did these wrinkles come from? And my eyelids? They are beginning to droop". There are wrinkles in between my eyes and lines around my mouth. I can't lie, taking the time to really look at how "old" my face is starting to look could prove to be a bit depressing. But you know what's beautiful? I can move my face around and up and down, contort it any way I like, but the only way those lines will match up is if I smile. I smile and I watch the skin of my face slowly draw in and finally find its home in between those wrinkles and lines. My point? I would never have botox or any type of surgery to fix this. I will age gracefully and embrace all of changes my face will go through. They are part of who I've been and part of what I've become. They represent the fact that although I have struggled a great deal in my life, mostly self-inflicted, what I have done more than anything is smile. But, I won't let myself fall apart either as many women do. I will continue to pluck and shave and primp; wear make up, wear cute clothes that make me feel good, and make the most of what I have. I will find comfort in the happy medium. It's like that with everything in my life. With drinking, dieting, and exercising; with money and with love (some for you and some for me). And I know that it's what I am longing for with where I am at spiritually. I have gone through many changes in this aspect of my life and I am still searching for that happy medium. I am looking for a nice balance between what I feel is true and what I want to be true. And I like that about myself. I like that I don't have to label myself as anything. I don't have to say "I am a christian" or "I am a Buddhist". I believe a little of both, to be honest. I don't get stuck under the umbrella of one belief system and that gives me the freedom to search and explore. I don't have to say "I like country music" or "I like alternative music". I like all kinds of music and I love to sing. That's what matters. Music is a part of me; a very big part of me. I used to walk into a room and think "I hope these people like me". I went from that to walking in and thinking "I hope I like these people". And now I don't think anything really; I just hope we all have a good time. Allowing myself to like whatever I like, to think and feel whatever I may, allows me to find a balance, to live in the happy medium, and allows me to be a bigger, fuller person. I don't have to be a specific kind of person. I don't have to be anything. I simply have to live my life; trusting myself, my instincts, and my heart. Not wanting or needing to be something, but instead, just allowing myself to be.

Happy

Maybe I should change the name of this blog? I came up with this title, over 2 years ago, when I felt like I was just about there, where I wanted to be; content and at peace in the present moment. It was almost as if everything I have learned in the past two years was already there, inside me. Like I knew it, but couldn't find the words to express it or hadn't a clue how to put it into fruition. I was almost happy; teetering precariously on the fine line between just accepting my life as it is and all that brings with it (a sense of balance, a feeling of peace, and thankfulness for everything I have...even the simplest things like the fact that I'm alive) and going on about my life the way I had been; pissing and moaning about all the things I wanted and didn't have, playing the victim, dwelling on problems, and making everything INTO a problem. I think I know what it was that tipped the scale and although, at the time, I could never have imagined being thankful for THAT, I am very thankful, indeed. But there is no borderline anymore and, aside from being human, no disorder. There is just happiness. I am certainly not implying that I am happy 100% of the time or never struggle with things; I do, all the time. The difference now is that I finally understand that happiness is a choice. No matter what happens, even though I might catch myself getting wrapped up in worry or frustration or disappointment for a moment (or sometimes two), I now know that I can choose happiness over any of those other states of mind. I can choose happiness and I can choose it every time. All I have to do is just surrender. And surrendering is not weakness, it is inner strength. At times I am blown away by how simple it really is, how easy it can be. And sometimes it isn't easy, sometimes I fight it and find myself just simply wanting to feel bad. But, all I have to do is remind myself that I have a choice, that happiness IS a choice and ask myself this simple question: "Why wouldn't I choose it?" I have yet to come up with a logical answer for that one. So, no more borderline and no more disorder.

Putting things back in perspective

I don't know why I only post to this blog, what, once a year? That part of me that yearns to get thoughts and feelings out lies dormant, most of the time, I guess. I like to call it my "pensive" self. I would say that for many years this was a dominant part of my personality and now, well now it is simply a mood I get in to now and again. And sometimes, I need to purge to put myself directly in the spot I need and want to be: right here, right now. It's Gavin's fault. I start listening to him (really listening, not just background noise...but the whole "Oh wow, look at what he said there, etc.) You get what I mean. And suddenly my thoughts begin to wander here and there and I do my best to keep up with them. So here are my scattered thoughts for the day:

I miss my guitar. And I wish I knew how to play the piano. I used to be able to play the piano when I was younger, but I could only play really simple songs. And, in regards to my guitar, I can only strum (picking is out of the question). This is a coordination thing, isn't it? I would love to be able to play for myself, to accompany myself on either the guitar or the piano, while I sing. Because I love to sing. And wouldn't it be great to be able to write music too? So many things I WANT. Like what I've just mentioned and a home of my own, and a family of my own, and some new clothes. It is so easy to get caught up in the things we want and easy to forget about the things we have (over and over again it all comes back to "complete acceptance of what is"...bless you Eckart Toelle). So, I'll allow that to roll on off my back, and go on about my day. Run my errands (I have a car) and head home (I have a place to live). Then I'll work out (I have the motivation to keep my body in shape). Then I'll make something to eat (I have enough money to put food in my belly...mmm...spaghetti with whole wheat pasta). Then I'll plop down on the couch and study for my test (I have the passion to learn new and interesting things) with my cats by my side (I have many "people" who love me). Ahh...perspective. *sigh*.