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.