My mom always urged me to take care of myself. When one of your kids has multiple specialists they see more than yearly, it's easy to let your own stuff wait. She reminded me that having Daniel makes it even more important Not to let things slide. She was, of course, righter than right.
I started bleeding right after the beginning of the school year. I'm a nurse who works in an elementary school diabetes clinic, and I know "my" kids blood sugar rhythms almost better than my own. So, I did not have time for this. I did not want to call in a sub. I told myself it was probably a hemorrhoid. The script my doc gave me for a colonoscopy had already expired, so I called for another, and figured I'd get it done over one of our breaks.
In late October I panicked. I freaked out a little, and the initial meeting with a GI specialist was scheduled, which resulted in a colonoscopy booked for November.
It's cancer.
I'm home now after major surgery last Thursday. There were some snafus, and I had to be operated on twice. Once on November 25, then again December 12. We're just waiting for the pathology reports now, but there is about a foot of my intestines gone.
I've never been prouder of my oldest girl. She is mini-me, only at least 1,000 x smarter. She, along with our caregiver, have taken care of Daniel so that Rich can focus mostly on me. God, I love that kid. Without her, I'd be pretty screwed right now.
And now, more than ever, my thoughts of a community are strong. We cannot do this alone. I've been taught that in a big way.
I have much more to say, but I'm groggy from medication. But damn, mom, I apologize for not listening to you. I will try to do better. No more putting things off or diagnosing myself. That's just really, really dumb.
Thanks for reading, whoever is out there.
Tuesday, December 17, 2013
Tuesday, October 22, 2013
Living Together
I've blogged about this a few times before, and it's still a burning desire. I want a commune!
There are a few lovely options for people with intellectual disabilities who are ready to move out and on with life. Noah's Ark in central Florida is one. They have an entire village that they compare to Mayberry of Andy Griffith fame. There are also the L'Arche communities sprinkled across the U.S. and world. There's Camphill, a living arrangement inspired by Waldorf Education and Rufolf Steiner. All of these are either for adults leaving home, or children living away from their parents.
My vision is a little different. I'd like to create a place where a few families can live out their days together with support, love and joy. I see my son at the center of it all, with perhaps one or two other families who have a child with disabilities also as a focal point. The remaining community would consist of people who choose to live a communal life. We would have similar values and a common purpose.
I've started researching the possibilities. I found people in my state who explored the option of creating a Camphill School in Florida, and learned of the specific roadblocks to founding new forms of living that are considered "separate". Be assured that there is a lot of bureaucratic rules that make it anything but simple if you want help from the state waiver.
If we're not building an assisted living arrangement, then we must still fall under the home and community umbrella of services. If two or three families choose to live together and invite others to share life with them, some of the red tape might be eliminated. I am still investigating and determining what the rules and regulations are.
The next step would be finding each other. I need people who are ready to live a life of unity where more than just one mother and dad are in charge. My happiest days of my life were spent when my parents and even my former husband's parents were involved in our daily lives (the latter had some inherent problems to deal with, but that's life). My mom is gone now. My dad is nearing 80, and he's moved on with his life. My father-in-law died a few months after my mother did, and the rest of the family is 990 miles away.
I don't want to just live next door or around the corner, I want to be committed and connected at a deep level and on the same plot of land. Houses could be separate, or perhaps one huge ranch. I'm giving this a lot of mental energy and prayer.
Sometimes I feel like it's just a dream. I'll flash on the fear that I'm envisioning a Utopia that cannot be. Most of the time, though, I'm serious about finding a way to make this happen. I want to take the best that L'Arche, Camphill and Noah's Ark have to offer and build a little community of my own. For Daniel. For myself. For anyone else who feels this burning in their heart to belong and to be supported.
Stay tuned.
There are a few lovely options for people with intellectual disabilities who are ready to move out and on with life. Noah's Ark in central Florida is one. They have an entire village that they compare to Mayberry of Andy Griffith fame. There are also the L'Arche communities sprinkled across the U.S. and world. There's Camphill, a living arrangement inspired by Waldorf Education and Rufolf Steiner. All of these are either for adults leaving home, or children living away from their parents.
My vision is a little different. I'd like to create a place where a few families can live out their days together with support, love and joy. I see my son at the center of it all, with perhaps one or two other families who have a child with disabilities also as a focal point. The remaining community would consist of people who choose to live a communal life. We would have similar values and a common purpose.
I've started researching the possibilities. I found people in my state who explored the option of creating a Camphill School in Florida, and learned of the specific roadblocks to founding new forms of living that are considered "separate". Be assured that there is a lot of bureaucratic rules that make it anything but simple if you want help from the state waiver.
If we're not building an assisted living arrangement, then we must still fall under the home and community umbrella of services. If two or three families choose to live together and invite others to share life with them, some of the red tape might be eliminated. I am still investigating and determining what the rules and regulations are.
The next step would be finding each other. I need people who are ready to live a life of unity where more than just one mother and dad are in charge. My happiest days of my life were spent when my parents and even my former husband's parents were involved in our daily lives (the latter had some inherent problems to deal with, but that's life). My mom is gone now. My dad is nearing 80, and he's moved on with his life. My father-in-law died a few months after my mother did, and the rest of the family is 990 miles away.
I don't want to just live next door or around the corner, I want to be committed and connected at a deep level and on the same plot of land. Houses could be separate, or perhaps one huge ranch. I'm giving this a lot of mental energy and prayer.
Sometimes I feel like it's just a dream. I'll flash on the fear that I'm envisioning a Utopia that cannot be. Most of the time, though, I'm serious about finding a way to make this happen. I want to take the best that L'Arche, Camphill and Noah's Ark have to offer and build a little community of my own. For Daniel. For myself. For anyone else who feels this burning in their heart to belong and to be supported.
Stay tuned.
Thursday, September 26, 2013
Vulnerability
Daniel fell at school yesterday. He's fallen and been injured twice before. Once with his father while at the mall. That was a bad one with chipped, damaged and lost teeth. The incident was a culmination of some poor planning and unfortunate timing. One moment they were having fun, and the next he was flat on his face.
The second time was last year when my mom was dying and I was at her bedside in St. Louis. We're not even sure what the hell happened during that one, but apparently his caregiver dropped him in the bathroom and he lost his other (repaired after the first fall) front tooth. That event really made me angry. Partially because it was totally preventable according to the reports I later got, and mostly because I was 950 miles away and unable to do a damn thing about it. In one room my mom was on life support, and in another two plane rides away my boy was bleeding.
I remember getting the news while I was drinking coffee in the neuro ICU waiting room. I left, got on an elevator and railed at no one in particular. I cried and howled and when the elevator doors opened and a woman entered she asked me if I wanted her to call someone. If there was someone to call, I might have taken her up on it. In that moment I was exorcising my pain and helplessness, and there's no 911 for that.
Yesterday he was in the bathroom, standing as he always does, holding his teacher's hand to walk to his wheelchair. It happened fast. He slid. His back hit the plastic on the toilet and down he went. There are several large scrapes across his spine.
His teacher called me and told me about the sequence of events and expressed how sorry she is. She's a great lady. Taught for several years and knows her kids and her job. She told me she cried when he fell, and he put his hand on her head to comfort her. It was an accident. It was a fluke.I reassured her that this stuff happens. I should know, I work in an elementary school clinic for a living. I'm the one with the ice and bandages. I understand that kids fall on playgrounds, they run and bump their heads on things because they're not looking, and it is a natural part of childhood to get cut and bruised.
Yes, I know that accidents happen. This one, once again, just reminds me of how vulnerable my son is because of his disability. I can be grateful that he wasn't part of a high school fight or car wreck after boozing, but I'm also sad that at almost 15 he is injured doing what most of us take for granted. Going to the toilet.
The real focus shouldn't be on me and my emotions. I accept that Daniel's limitations make this a real part of his/our lives. I got on with things and brainstormed about how to prevent it from happening again. His teacher and I discussed it. Should two people be in the bathroom with him? No, it's too small and he doesn't usually need that level of assistance. Should she stand in front of him instead of at his side? Maybe. We'll figure it out when he goes back to school tomorrow. Her genuine sorrow at his pain was reassuring to me. She wasn't being careless, and she cared in the aftermath very much.
Our kids who can't speak or walk without help are the most vulnerable on the planet. Last night I asked Daniel what happened, and how he felt. He tried answering. He was shaking his head no at some of my questions, but sometimes the no shake means yes. I brought out the big, lit YES NO buttons, and he threw them. I wanted so badly at that moment to be able to either read his mind, or help him with facilitated communication on a keyboard. I could do neither. I think that all of my interrogating frustrated him and if he could have he'd have told me to leave him the hell alone. Well, I really shouldn't put words in his mouth, but the tossing of the YES NO buttons seemed a real attempt at that.
Daniel lives with his vulnerability. He seems to trust the world. He laughed and touched her face when his teacher cried. He smiled at me when I learned of his injury and came to him with a panicked expression and tone. He threw those buttons like a major league pitcher. Does he know some secret to the universe? Or does he just know how not to make a mountain out of a molehill?
I don't have the answers. I can only pray that in his vulnerability he is protected by people who care. I can ask that light and love surround him wherever he goes, and that the inept are kept far, far away from him. And I do.
The second time was last year when my mom was dying and I was at her bedside in St. Louis. We're not even sure what the hell happened during that one, but apparently his caregiver dropped him in the bathroom and he lost his other (repaired after the first fall) front tooth. That event really made me angry. Partially because it was totally preventable according to the reports I later got, and mostly because I was 950 miles away and unable to do a damn thing about it. In one room my mom was on life support, and in another two plane rides away my boy was bleeding.
I remember getting the news while I was drinking coffee in the neuro ICU waiting room. I left, got on an elevator and railed at no one in particular. I cried and howled and when the elevator doors opened and a woman entered she asked me if I wanted her to call someone. If there was someone to call, I might have taken her up on it. In that moment I was exorcising my pain and helplessness, and there's no 911 for that.
Yesterday he was in the bathroom, standing as he always does, holding his teacher's hand to walk to his wheelchair. It happened fast. He slid. His back hit the plastic on the toilet and down he went. There are several large scrapes across his spine.
His teacher called me and told me about the sequence of events and expressed how sorry she is. She's a great lady. Taught for several years and knows her kids and her job. She told me she cried when he fell, and he put his hand on her head to comfort her. It was an accident. It was a fluke.I reassured her that this stuff happens. I should know, I work in an elementary school clinic for a living. I'm the one with the ice and bandages. I understand that kids fall on playgrounds, they run and bump their heads on things because they're not looking, and it is a natural part of childhood to get cut and bruised.
Yes, I know that accidents happen. This one, once again, just reminds me of how vulnerable my son is because of his disability. I can be grateful that he wasn't part of a high school fight or car wreck after boozing, but I'm also sad that at almost 15 he is injured doing what most of us take for granted. Going to the toilet.
The real focus shouldn't be on me and my emotions. I accept that Daniel's limitations make this a real part of his/our lives. I got on with things and brainstormed about how to prevent it from happening again. His teacher and I discussed it. Should two people be in the bathroom with him? No, it's too small and he doesn't usually need that level of assistance. Should she stand in front of him instead of at his side? Maybe. We'll figure it out when he goes back to school tomorrow. Her genuine sorrow at his pain was reassuring to me. She wasn't being careless, and she cared in the aftermath very much.
Our kids who can't speak or walk without help are the most vulnerable on the planet. Last night I asked Daniel what happened, and how he felt. He tried answering. He was shaking his head no at some of my questions, but sometimes the no shake means yes. I brought out the big, lit YES NO buttons, and he threw them. I wanted so badly at that moment to be able to either read his mind, or help him with facilitated communication on a keyboard. I could do neither. I think that all of my interrogating frustrated him and if he could have he'd have told me to leave him the hell alone. Well, I really shouldn't put words in his mouth, but the tossing of the YES NO buttons seemed a real attempt at that.
Daniel lives with his vulnerability. He seems to trust the world. He laughed and touched her face when his teacher cried. He smiled at me when I learned of his injury and came to him with a panicked expression and tone. He threw those buttons like a major league pitcher. Does he know some secret to the universe? Or does he just know how not to make a mountain out of a molehill?
I don't have the answers. I can only pray that in his vulnerability he is protected by people who care. I can ask that light and love surround him wherever he goes, and that the inept are kept far, far away from him. And I do.
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