Thursday, March 02, 2006
Happy for now
Happy for now
I dropped off Alice at school this morning and ran into Dawn, the principal of the school, and she said, so what now? I shrugged and she said, “just happy for now?” Yep. That sums it up. Happy for now.
In many ways it is “happy for now”. Alice is starting to go back to school. This is good. She loves being in school and while she is exhausted, she is also invigorated to be back in school. She is taking it slow, a few classes a day, but this is nothing but good. I have to confess that dropping her off at school was hard for me. I have been with her non-stop, sleeping in the same room, hanging out with her constantly, and turning her over to the school was hard – initially very hard – but good. It’s hard because I have seen her crash out of the blue, and I know that she is not nearly as physically strong as she acts. And it is hard because after spending so much time caring and worrying and protecting her 24 hours a day, to have her out of my reach, out of my protection, is hard. Hard for me, but good for her. And if it is good for her, it is good. Good for now. Happy for now.
Happy for now, in that the surgery had the best possible outcome. It was difficult surgery, but she is recovering so well. And while there was so much discussion and concern before the surgery regarding “proceeding regardless of outcome”, the outcome has been wonderful. We went up to Portland Monday for Alice’s post-op check up and she is officially released from the neurosurgeon. She’s healing well and they put her on a slow gradual wean off her steroids. Alice has some mild muscle weakness on the left side, but only perceptible to those in the know whose job it is to test her muscle strength. And her left hand just has some mild sensory changes, but she is able to use it well. This is good for now. Hopefully when she’s off the steroids, this won’t change. The follow up from here is back to oncology with Stacy and our regular crew.
Happy for now in that now, today, she is doing well. We know that surgery did not cure her, but for now, there is a break in the action. It’s funny; as I write these words I have to acknowledge that, truthfully, I am both happy and sad, excited and tired, up and down. There are so many phases and stages to this process, and while her surgery went better than I imagined, there is still this sadness, sometimes this anger, sometimes this sense of despair. I am an optimistic and positive person, as is Alice and all my family. And I prefer to stay in the “be here now”, “be happy” mode that I generally operate out of. But I need to acknowledge the sadness. I am sad that we have had to do this again and again. Sad that it is not over. Sad that there are so many struggles in life. Sad that there are so many who struggle in so many ways.
Many times as I have written these messages (especially now that they are in this format – a blog site – and are going out to anyone and everyone who chooses to read them), I have I felt this sense of needing to share so that others who have children going through similar life experiences will know … know they are not alone. Know that when the outcome is good and they still feel sad, it’s OK. Know that it is the unknown that is the scariest. Know that sometimes you will feel very, very alone. But you’re not alone. There is so much love and compassion out there, that you are never truly alone. Yes it’s scary. Looking at your child’s mortality in the face is the most overwhelming thing in the world. Having your entire heart and mind and spirit occupied with life and death issues is, at least, overwhelming, if not devastating. And know and it is often when things sort of settle down that you can get out of the numb phase enough to feel. And it is the feeling … that is the hard part. Feeling the fear and the relief and the happiness and the sadness. Feeling where you’ve been, and wondering … where you’re going. Feeling.
I write these words for all who feel; for all who love and for all who worry. You are not alone, and you are not crazy. You are human, and that my dear friends is not an easy thing to be. I’d love to be always brave, always trusting, always just delighting in today. But I need to tell you, that I am not. And I want us all to remember, we are on this journey together, and it is OK to be human, to be scared, to be … whatever we are and feel whatever we feel. And as I’m writing these words to “all of you out there”, I am really writing them to me. For today, I am feeling so much. And today, I am trusting that you will all understand, and even if you don’t, that you’ll love me anyway.
Happy for now. Happy for today. Happy for the gift of this day. Happy, yet sad.
Peace and love,
Susan
I dropped off Alice at school this morning and ran into Dawn, the principal of the school, and she said, so what now? I shrugged and she said, “just happy for now?” Yep. That sums it up. Happy for now.
In many ways it is “happy for now”. Alice is starting to go back to school. This is good. She loves being in school and while she is exhausted, she is also invigorated to be back in school. She is taking it slow, a few classes a day, but this is nothing but good. I have to confess that dropping her off at school was hard for me. I have been with her non-stop, sleeping in the same room, hanging out with her constantly, and turning her over to the school was hard – initially very hard – but good. It’s hard because I have seen her crash out of the blue, and I know that she is not nearly as physically strong as she acts. And it is hard because after spending so much time caring and worrying and protecting her 24 hours a day, to have her out of my reach, out of my protection, is hard. Hard for me, but good for her. And if it is good for her, it is good. Good for now. Happy for now.
Happy for now, in that the surgery had the best possible outcome. It was difficult surgery, but she is recovering so well. And while there was so much discussion and concern before the surgery regarding “proceeding regardless of outcome”, the outcome has been wonderful. We went up to Portland Monday for Alice’s post-op check up and she is officially released from the neurosurgeon. She’s healing well and they put her on a slow gradual wean off her steroids. Alice has some mild muscle weakness on the left side, but only perceptible to those in the know whose job it is to test her muscle strength. And her left hand just has some mild sensory changes, but she is able to use it well. This is good for now. Hopefully when she’s off the steroids, this won’t change. The follow up from here is back to oncology with Stacy and our regular crew.
Happy for now in that now, today, she is doing well. We know that surgery did not cure her, but for now, there is a break in the action. It’s funny; as I write these words I have to acknowledge that, truthfully, I am both happy and sad, excited and tired, up and down. There are so many phases and stages to this process, and while her surgery went better than I imagined, there is still this sadness, sometimes this anger, sometimes this sense of despair. I am an optimistic and positive person, as is Alice and all my family. And I prefer to stay in the “be here now”, “be happy” mode that I generally operate out of. But I need to acknowledge the sadness. I am sad that we have had to do this again and again. Sad that it is not over. Sad that there are so many struggles in life. Sad that there are so many who struggle in so many ways.
Many times as I have written these messages (especially now that they are in this format – a blog site – and are going out to anyone and everyone who chooses to read them), I have I felt this sense of needing to share so that others who have children going through similar life experiences will know … know they are not alone. Know that when the outcome is good and they still feel sad, it’s OK. Know that it is the unknown that is the scariest. Know that sometimes you will feel very, very alone. But you’re not alone. There is so much love and compassion out there, that you are never truly alone. Yes it’s scary. Looking at your child’s mortality in the face is the most overwhelming thing in the world. Having your entire heart and mind and spirit occupied with life and death issues is, at least, overwhelming, if not devastating. And know and it is often when things sort of settle down that you can get out of the numb phase enough to feel. And it is the feeling … that is the hard part. Feeling the fear and the relief and the happiness and the sadness. Feeling where you’ve been, and wondering … where you’re going. Feeling.
I write these words for all who feel; for all who love and for all who worry. You are not alone, and you are not crazy. You are human, and that my dear friends is not an easy thing to be. I’d love to be always brave, always trusting, always just delighting in today. But I need to tell you, that I am not. And I want us all to remember, we are on this journey together, and it is OK to be human, to be scared, to be … whatever we are and feel whatever we feel. And as I’m writing these words to “all of you out there”, I am really writing them to me. For today, I am feeling so much. And today, I am trusting that you will all understand, and even if you don’t, that you’ll love me anyway.
Happy for now. Happy for today. Happy for the gift of this day. Happy, yet sad.
Peace and love,
Susan
# posted by heinzfamily @ 12:04 PM 
