Thursday, September 08, 2011
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.
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.
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