So I was having a pity party the other day and I told the girls how now that my mother is gone, no one loves me but them. This is not entirely true but it's close. Though there are plenty of friends and extended family who love me from afar, they are not day to day like my mother. My mother was my best friend and almost like my partner in life. I could call her most nights before bed and we would laugh and cheer each other up after a tough day or share each other's happiness on a good day.
"No one loves mama but you guys," I said as Eliza hugged me tightly.
"But Mama," Elena said, spoon in hand. We were in the middle of our dinner of leftover ziti and embellished lipton soup. "You're the greatest."
I laughed. Elena says many things to me, not all of them kind. She can also be a very tough children, she screams, hits and often shoves me pretty hard when she's not getting her own way. A lot of the time, when I don't give her what she wants or I correct an inappropriate behavior, she says "I don't like Mama anymore. I don't want Mama." Eliza often gets offended when Elena says such things, jumping to my defense. I mediate by telling Eliza that her sister is only three, she doesn't know half of what she's saying.
So considering the source, I'm not exactly walking around patting myself on the back and feeling like I'm the greatest. It was a nice moment, a cute moment, worth recording here. It did the trick of making me feel loved. But the loneliness is starting to expand.
Thanksgiving weekend was a tough weekend. I spent some of it dealing with the business aspect of losing my mom. I met with the realtor who, if I use her, plans to list the house a full $50,000 less than what's owed to the bank. My mother lived in her house for 20 years and was a bit of a pack rat so poking around there, figuring out how to clear it out is horrifying. I can get a dumpster, have a sale, host a cleaning out mom's house party but still the clean up can take months.
And then there's her mail, the ominous stack of bills with no funds to back them up. I addressed one letter after another notifying bill collectors of her death. This process took about two hours. All but two bills were medically related, some from collection agencies for amounts as low as $40. I felt an overwhelming sadness as I went through these bills realizing this had been her life for so many years, a struggle to pay out money that few people would have to every lab, doctor's office, medical facility and collection agency. Even a wealthy person would find themselves financially challenged and this was my mother's life, sending money she didn't have for "supply fees", "lab copay."
And she still met my phone calls with enthusiasm, happy to listen to me whine or giggle over my latest escapade.
My poor mama, how she deserved so much better. I miss her and I ache for her now. I should have been there for her more, should have helped her write those bills, just been at her side, letting her know she wasn't in this alone.
Tuesday, November 27, 2012
Friday, November 16, 2012
The Orphan
From the children's book, "The Orphan: A Cinderella Story from Greece."
My mother lost her long fight for her life around 2:30a Wednesday, November 14. I was with her, timing a Smash script when she left me. I sat on the floor about two feet away from her bed, my back to her, acting out the end of Act IV. As I whispered the last of Ivy Lynn's lines, I suddenly realized that the horrific gurgle of her breath had silenced. I looked at her, saw her chest rise and then spread out and stop, and rushed out of the room shouting "She's quiet!" Three nurses marched in, brandishing stethoscopes. One picked up her right arm which was pressed against the edge of the bed and rested in gently on her stomach. I slid down against the wall and sat on the floor.
"I'm sorry for your loss," the first nurse out of the room said. I stayed on the floor, refusing their offer of a chair, not wanting to be far from my mom as I waited for the undertaker type to arrive an hour later. I didn't watch as he went into the room but the sound of a long zipper rising will never leave me.
I am not young and I still have a father but I feel like an orphan. There are no words. Eliza's birthday is next week so this weekend is filled with activities to celebrate her birthday. She knows of my mother's death but is quietly mourning in her own way. I don't know that the reality of forever is quite as accessible to her yet. Frankly, I don't know that I realize it now. I am going through the motions. Sometimes when I'm giggle with my girls, I see Mom's face as she gasped on that hospital bed and I feel terrible that life continues, often joyously, for us when hers has stopped. I will never stop feeling her weak arm around me for the last hug I will ever get from my mother. It's like she willed herself to make it to my birthday and then let go. After that, it was relatively quick.
In mid-October, the facility called to say she might code that night and what should they do about a DNR. The nurse called to ask if she should bother to send my mother to the hospital or just let it go. While I knew she had a terminal illness, I didn't know what was wrong with her and it was hard for me to believe that this was it. So I told her she absolutely did not have my permission to just let my mother stay there without getting checked out. It turned out she had a UTI which in the elderly or the very sick can render the sufferer delusional. I met her at the hospital and watched as she screamed repeatedly that she had to move her bowels. Two nurses pushed her onto a bedpan as she raised her arms touchdown style and grimaced but nothing happened. I saw her naked that night, clawing at the hospital gown and the bedsheets. My mother would not want me to see her naked but there I stood, staring at her mutilated body, the flat right breast from her mastectomy with it's useless nipple recreated by a plastic surgeon. The long train tracks of a scar that ran down her abdomen from either her colon resection or the whipple. Her wide fishbelly white butt as she writhed on the hospital bed. the bruises that ran down her left arm from everyone trying to unsuccessfully extract blood from her collapsing veins. I looked at this body, realizing it had no business being alive.
I stood over her, not knowing it was a UTI, thinking that this was it, she was leaving me. I patted her hair, touching the misshapen scar caused by a craniaotomy that removed a benign brain tumor six weeks before Elena was born.
"I see you," she said, not to me.
"Do you, mom? Do you see Pap Pap?" My beloved grandfather.
"No," she said, looking at me for the very first time. "I don't see him. I don't see Pap Pap. I don't want to die," she said and I understood.
"I don't want to die. I don't want to die."
I nodded.
"I don't want you to die." I said.
But you're gonna, I thought, staring at the scars, all that damage so immediately apparent.
She didn't die, not that week. It was a UTI and within hours of starting an antibiotic, she was greeting nurses and visitors with the words "I hear I was delirious. Sounds interesting."
We were separated by the storm and three days passed without my being able to check in on her because the phones and the power was out. So when I found her and I heard she was all right, that she was actually sitting up in a chair again, I became so hopeful. The storm had passed and we were okay and I would be home and she would be with me again.
But she wasn't. She was so very sick when we finally saw her on November 4th. But she held it together until November 7. She hugged me, she told me she loved me. She went under the next day, babbling and gyrating with discomfort for two days and then comatose for the next four. She didn't babble about seeing anyone who'd passed, it sounded more like she was somewhere else, reliving her youth. There was no talk of white lights or some one else in the room. Only of the steps she had to go down and the "practice" she had to do.
I think of her that night in the ER and all those battle scars. How much that body had been through just so she could stay with us. Before she went into the hospital never to return, she could barely get up from her chair but yet she hid how badly she felt so I'd let my kids stay with her when I went back to work for two weeks in the summer. My babysitter tells me now how my mother told her not to tell me that she had pain. I don't know if she didn't want me to worry or if she was afraid I'd take the kids away. What I do know is how little she told me about what she was going through. How little she wanted me know.
Her sad, weak, almost useless naked body with all those scars. I stood beside her that night, not able to hold her hand because she squirmed from one side of the bed to the other. I stared down at the jagged lines on her navel and I felt nothing but a hot, fierce, surging pride. I don't know that I will ever be prouder of anyone, not even my own kids, ever.
This was my mom at the end of her life but there's so much more to her, so much more. I don't know that I even love my kids as much as I love her.
Sunday, November 11, 2012
Sandy Battered
So Sandy drove us from our home by the beach. I'm happy to say our apartment was unharmed and life is slowly returning to normal for us after being displaced for ten days. It was quite a ride and the landscape has changed in ways I couldn't have foreseen. Though we came through it all unscathed, I still feel like I've got some kind of post traumatic stress going on and we were hardly experienced the storm itself. It's the stories of others, the photos of so many places I loved, the shock of seeing the Mantoloking Bridge, a bridge that connected me to my Mom's house under water. Seeing that roadway severed is like cutting an artery off between me and her.
I was prepared to ride out the storm with the girls alone. This plan started to fall flat when I realized my next door neighbor was vacating and leaving us on our own. On Sunday, C came down and gently urged us to come to his place in Manhattan. I thought it weird for all of us to be staying under one roof, especially now that he's got a hot young girlfriend but he said it wouldn't be weird and I'm happy to say it wasn't. We drove back to his place on Sunday and functioned pretty well, even surviving the power outage Monday night with fun stories, candlelight and an early bedtime.
Tuesday saw things a little tenser. The power still hadn't returned and C was getting antsy. Brooklyn had power and I retain a small room there. C's brother lives there and he decided to go there. They only problem was getting there with no subways running and cabs a hotter commodity than they've ever been. We did eventually get a cab to take us to Williamsburg where my friends Melissa and Tim waited with open arms. C got a ride to his brothers and the girls and I embarked on our Brooklyn adventure with plenty of fine meals and fun and Melissa's.
The lack of power in Manhattan tunnel closings prevented us from returning to our area until the following weekend. The facility my mother is in lost phone service and I went out of my mind through the week wondering how she was. A friend was finally able to stop by on Thursday and gave me an emergency number. A nurse happily told me she was actually sitting up in a chair and had done fairly well that day. She'd not been in great shape over the weekend so I felt thrillingly hopeful to hear she'd been sitting up in a chair.
We came home to find our place in good shape but plenty of streets a mess. We took a long walk through town and along the beach to survey the damage. The boardwalk had been completely ripped from the foundation like it had never existed. Huge pieces of the boardwalk were everywhere. Memorial benches were stacked up in various places in varying states of ruin. I planned to get a memorial bench for my Mom for this boardwalk. Now this doesn't seem like such a good idea.
After decided that our home, while undamaged, was too cold to stay in with no electricity and heat, I packed the girls up again to head to my father's. On the way to his place, we stopped by to see my Mom. The Steeler game was on the TV but my mother was gyrating and grimacing in pain. Elena had one meltdown after another, eventually pooping in her pants. I'd not seen my mother for a week and in this moment, I was very frustrated with my kids for not allowing me some time with Mom. Finally, I stuck them in the hallway and the nurses chimed in with lollipops and paper and colored markers. I sat and held mom's hand but there wasn't much I could do. She was obviously in pain and couldn't even feign much interest when I told her about all the damage; about the friend currently staying in her house because she got flooded from her home, about the decimation of Sea Bright and Mantoloking, about the roller coaster in Seaside that was now lying in the Ocean.
She asked me to bring her a newspaper when I came back. I nodded and said I would. I did bring that paper a few days later but by this point, she was too out of it to even look at it.
My mother was in pain that night but she was still my mother. The following day, after a restless night on an air mattress at my father's, I signed her over to in-hospice care. The day after that the nurse told me Mom would not open her eyes again but the nurse was wrong. That night she opened her eyes and she nodded and communicated some what with us.
The following day was my birthday. I couldn't spend as much time with her as I wanted because of an incoming snow storm but it may have been the last day I spent with my mother as my mother. She couldn't really talk much but we could communicate with nods and gestures. I climbed onto the bed with her and she hugged me with her one good arm. Her left arm just drooped there, suddenly useless for reasons unknown.
A foot of snow kept me at my father's the following day longer than I wanted but we eventually made it out and came home to find that after ten days we had electricity. My babysitter met us at our place and I dropped Eliza off at dance (her first foray into her old life in close to two weeks as school was cancelled) and I rushed off to see Mom. Mom muttered and gyrated a lot, seemingly frustrated with her body's limitations. I couldn't understand most of what she said. She kept rambling about her salvation. This is not a word she used much in her life. I finally had to head home, to get some groceries for my family and settle in to my first night in my bed in close to two weeks.
Friday, my mom was awake and alert but not my mom. She kept muttering about her mom, her sister, how she had to get up and do her practice. She had to do the dishes and go down the steps. I thought she might be back in the house she grew up in with my grandparents but I really can't be sure. She was visibly uncomfortable and seemed frustrated by the fact that I couldn't help her. I didn't think she knew who I was but at one point, she asked that her diaper be changed and said she didn't want "lisa in the room." So she did know me and tears came to my eyes.
I came home that evening, made dinner for my kids and then headed back. Mom was still agitated so they gave her more drugs. The drugs seemed to work and she conked out. But Saturday, the day they finally restored power to the area around her facilty, Mom's eyes didn't open. She moved around a bit, grumbling like she was trying to wake up but nothing happened. My Aunt Carm, my mother's sister, finally came after months of not bothering and threw a fit because she didn't know how bad it was. I felt like telling her pancreatic cancer is a horrible thing and she missed opportunities to see Mom left and right but there's no point in trying to deal with Mom's crazy sister. She came, she saw, she ran out in tears I'm sure never to return again. I can't even feel sorry for her because I'm way too busy feeling sorry for myself.
Tonight I sat there holding my Mom's hand, listening to her grunt. I tried to drip water into her mouth but she closed her mouth tightly. I talk to her and I think she hears me but honestly, it doesn't matter. It doesn't seem to be comforting to her. Sometimes touching her, rubbing her head or holding her hand seems to soothe her but often it seems to just agitate her.
The girls finally go back to school tomorrow. A guy I work with shot himself yesterday and the memorial is up in North Jersey on Tuesday. I'm supposed to return to work on Thursday but I just don't know how that's going to happen. My girls keep me going but at the same time, I feel myself unraveling. The train that connected my home to New York sustained serious damage so there's another artery that's been cut.
I look at that picture of that roller coaster in the Atlantic and I think, that's me. I don't belong here, I shouldn't be here and yet here I am, just bobbing above the surface, waiting for some one or something to take me to wear I belong.
I was prepared to ride out the storm with the girls alone. This plan started to fall flat when I realized my next door neighbor was vacating and leaving us on our own. On Sunday, C came down and gently urged us to come to his place in Manhattan. I thought it weird for all of us to be staying under one roof, especially now that he's got a hot young girlfriend but he said it wouldn't be weird and I'm happy to say it wasn't. We drove back to his place on Sunday and functioned pretty well, even surviving the power outage Monday night with fun stories, candlelight and an early bedtime.
Tuesday saw things a little tenser. The power still hadn't returned and C was getting antsy. Brooklyn had power and I retain a small room there. C's brother lives there and he decided to go there. They only problem was getting there with no subways running and cabs a hotter commodity than they've ever been. We did eventually get a cab to take us to Williamsburg where my friends Melissa and Tim waited with open arms. C got a ride to his brothers and the girls and I embarked on our Brooklyn adventure with plenty of fine meals and fun and Melissa's.
The lack of power in Manhattan tunnel closings prevented us from returning to our area until the following weekend. The facility my mother is in lost phone service and I went out of my mind through the week wondering how she was. A friend was finally able to stop by on Thursday and gave me an emergency number. A nurse happily told me she was actually sitting up in a chair and had done fairly well that day. She'd not been in great shape over the weekend so I felt thrillingly hopeful to hear she'd been sitting up in a chair.
We came home to find our place in good shape but plenty of streets a mess. We took a long walk through town and along the beach to survey the damage. The boardwalk had been completely ripped from the foundation like it had never existed. Huge pieces of the boardwalk were everywhere. Memorial benches were stacked up in various places in varying states of ruin. I planned to get a memorial bench for my Mom for this boardwalk. Now this doesn't seem like such a good idea.
After decided that our home, while undamaged, was too cold to stay in with no electricity and heat, I packed the girls up again to head to my father's. On the way to his place, we stopped by to see my Mom. The Steeler game was on the TV but my mother was gyrating and grimacing in pain. Elena had one meltdown after another, eventually pooping in her pants. I'd not seen my mother for a week and in this moment, I was very frustrated with my kids for not allowing me some time with Mom. Finally, I stuck them in the hallway and the nurses chimed in with lollipops and paper and colored markers. I sat and held mom's hand but there wasn't much I could do. She was obviously in pain and couldn't even feign much interest when I told her about all the damage; about the friend currently staying in her house because she got flooded from her home, about the decimation of Sea Bright and Mantoloking, about the roller coaster in Seaside that was now lying in the Ocean.
She asked me to bring her a newspaper when I came back. I nodded and said I would. I did bring that paper a few days later but by this point, she was too out of it to even look at it.
My mother was in pain that night but she was still my mother. The following day, after a restless night on an air mattress at my father's, I signed her over to in-hospice care. The day after that the nurse told me Mom would not open her eyes again but the nurse was wrong. That night she opened her eyes and she nodded and communicated some what with us.
The following day was my birthday. I couldn't spend as much time with her as I wanted because of an incoming snow storm but it may have been the last day I spent with my mother as my mother. She couldn't really talk much but we could communicate with nods and gestures. I climbed onto the bed with her and she hugged me with her one good arm. Her left arm just drooped there, suddenly useless for reasons unknown.
A foot of snow kept me at my father's the following day longer than I wanted but we eventually made it out and came home to find that after ten days we had electricity. My babysitter met us at our place and I dropped Eliza off at dance (her first foray into her old life in close to two weeks as school was cancelled) and I rushed off to see Mom. Mom muttered and gyrated a lot, seemingly frustrated with her body's limitations. I couldn't understand most of what she said. She kept rambling about her salvation. This is not a word she used much in her life. I finally had to head home, to get some groceries for my family and settle in to my first night in my bed in close to two weeks.
Friday, my mom was awake and alert but not my mom. She kept muttering about her mom, her sister, how she had to get up and do her practice. She had to do the dishes and go down the steps. I thought she might be back in the house she grew up in with my grandparents but I really can't be sure. She was visibly uncomfortable and seemed frustrated by the fact that I couldn't help her. I didn't think she knew who I was but at one point, she asked that her diaper be changed and said she didn't want "lisa in the room." So she did know me and tears came to my eyes.
I came home that evening, made dinner for my kids and then headed back. Mom was still agitated so they gave her more drugs. The drugs seemed to work and she conked out. But Saturday, the day they finally restored power to the area around her facilty, Mom's eyes didn't open. She moved around a bit, grumbling like she was trying to wake up but nothing happened. My Aunt Carm, my mother's sister, finally came after months of not bothering and threw a fit because she didn't know how bad it was. I felt like telling her pancreatic cancer is a horrible thing and she missed opportunities to see Mom left and right but there's no point in trying to deal with Mom's crazy sister. She came, she saw, she ran out in tears I'm sure never to return again. I can't even feel sorry for her because I'm way too busy feeling sorry for myself.
Tonight I sat there holding my Mom's hand, listening to her grunt. I tried to drip water into her mouth but she closed her mouth tightly. I talk to her and I think she hears me but honestly, it doesn't matter. It doesn't seem to be comforting to her. Sometimes touching her, rubbing her head or holding her hand seems to soothe her but often it seems to just agitate her.
The girls finally go back to school tomorrow. A guy I work with shot himself yesterday and the memorial is up in North Jersey on Tuesday. I'm supposed to return to work on Thursday but I just don't know how that's going to happen. My girls keep me going but at the same time, I feel myself unraveling. The train that connected my home to New York sustained serious damage so there's another artery that's been cut.
I look at that picture of that roller coaster in the Atlantic and I think, that's me. I don't belong here, I shouldn't be here and yet here I am, just bobbing above the surface, waiting for some one or something to take me to wear I belong.
Wednesday, October 17, 2012
Hearts
The pain of watching the life flow out of some one I love so thoroughly, intensely and completely is not something I'm capable of describing adequately. I keep remembering a line written by a male writer I really respect who's name escapes me now, the line goes something along the lines of "amplified to a scream." The pain I'm feeling is amplified to a scream.
I dug out my Mary Oliver poetry book today. I thought it would be nice to read these poems to my mother in moments of relative calm. Now's the time when I just want to sit beside her, hold her hand and cherish each moment I can look at her and see her still breath.
A heart with an arrow is drawn at the top and bottom of the note. I've no idea when it was written but there's no disputing that it's her handwriting.
Hi-
hope these eye drops help. If they do and ou need more, let me know.
Sorry it's only half-full (beside this line there is also another drawing of another heart and inside it reads (I Love Lisa) but if they work, that should sustain you until I get more--
Mom
I have never been able to properly describe her in writing. I have very little notes or remnants of our relationship. I only have what lives inside me and that does not seem like enough.
Thank you Patty. Your good wishes and comments have meant more to me than you could ever know.
I dug out my Mary Oliver poetry book today. I thought it would be nice to read these poems to my mother in moments of relative calm. Now's the time when I just want to sit beside her, hold her hand and cherish each moment I can look at her and see her still breath.
A heart with an arrow is drawn at the top and bottom of the note. I've no idea when it was written but there's no disputing that it's her handwriting.
Hi-
hope these eye drops help. If they do and ou need more, let me know.
Sorry it's only half-full (beside this line there is also another drawing of another heart and inside it reads (I Love Lisa) but if they work, that should sustain you until I get more--
Mom
I have never been able to properly describe her in writing. I have very little notes or remnants of our relationship. I only have what lives inside me and that does not seem like enough.
Thank you Patty. Your good wishes and comments have meant more to me than you could ever know.
Sunday, October 14, 2012
Sunny Sunday
Today was a great day. It was a beautiful, sunny, unseasonably warm day. The sky burned a beautiful, almost terrifying blue.
It is a calm time. My mother is in a rehabilitation facility, trying to get some strength back. I don't know that she'll ever walk without the aid of walker again. I still don't know how she went from being on her own to being completely immobilized in the space of a week but I guess that's cancer or chemo or something for you.
Whenever I visit my mother during the week, the case manager and the social worker appear to tell me my mother might be released any day to do insurance issues. But today was Sunday so there was none of that. I have a minor plan for when she is released but I have yet to even talk to any of the players. It's hard to tell exactly how much care Mom will need when she gets out because her progress is different every day. What I do know is that home health aids aren't covered by her insurance so once she gets out, whatever she needs will require a big burst of cash.
Today she was calm, responsive, rested, happy. She is feeling stronger and the overwhelming sadness she faced when the doctor decided to suspend any treatment, probably for good, fell to the background. We spoke of the girls, their new bunk beds, the cute guy at work that I now have a crush on, C and his new young girlfriend. She sat up the entire time I was there, a first for this month of October.
She asked if I could put the leg rests on her wheelchair and wheel her around. The old me, the me of only a few weeks ago really, wouldn't have tried. But I staired at the leg rests and the pegs on the sides of the chairs and I figured it out. And off we went, on a beautiful day, down the hall, into the elevator, and out the automatic doors to a beautiful day.
Trees surrounded us with the view of a manicured U shaped lawn and several flag posts. I didn't know how to put the break on the wheelchair and fearing accidentally releasing my mother into the parking lot, I sat beside her, holding the handles of the wheelchair. I could hear the traffic from Route 38, just on the other side of the trees. As a teenager, I often walked down the street this facility was on on my way to football games. I think it was mostly undeveloped land, maybe a few historic houses that had been leveled to make way for this facility for the old, the sick, the newly rehabilitated. I pointed to the trees in various directions, telling where the bank was, the eye doctor center that was once a florist. We once lived not far from this facility, in a house she and I shared with my brother, a home from another lifetime ago.
She was happy and so was I. I will remember this simple moment for the rest of my life.
Once inside, I steered her back into her room with a good view of her TV. I had to go, time to grocery shop and return to my world with my girls, my world outside the prison she now faces, this prison of poor health. I am so lucky to have this time with my mother. I am grateful for every day, every moment, every time I have ever been able to call her and have her pick up the other end.
I don't know how scary the road ahead of us is but I have today. I will always have it. I will always love her, maybe more than anyone. Maybe even more than my own daughters. She has always been the only person who was ever really and truly mine.
It is a calm time. My mother is in a rehabilitation facility, trying to get some strength back. I don't know that she'll ever walk without the aid of walker again. I still don't know how she went from being on her own to being completely immobilized in the space of a week but I guess that's cancer or chemo or something for you.
Whenever I visit my mother during the week, the case manager and the social worker appear to tell me my mother might be released any day to do insurance issues. But today was Sunday so there was none of that. I have a minor plan for when she is released but I have yet to even talk to any of the players. It's hard to tell exactly how much care Mom will need when she gets out because her progress is different every day. What I do know is that home health aids aren't covered by her insurance so once she gets out, whatever she needs will require a big burst of cash.
Today she was calm, responsive, rested, happy. She is feeling stronger and the overwhelming sadness she faced when the doctor decided to suspend any treatment, probably for good, fell to the background. We spoke of the girls, their new bunk beds, the cute guy at work that I now have a crush on, C and his new young girlfriend. She sat up the entire time I was there, a first for this month of October.
She asked if I could put the leg rests on her wheelchair and wheel her around. The old me, the me of only a few weeks ago really, wouldn't have tried. But I staired at the leg rests and the pegs on the sides of the chairs and I figured it out. And off we went, on a beautiful day, down the hall, into the elevator, and out the automatic doors to a beautiful day.
Trees surrounded us with the view of a manicured U shaped lawn and several flag posts. I didn't know how to put the break on the wheelchair and fearing accidentally releasing my mother into the parking lot, I sat beside her, holding the handles of the wheelchair. I could hear the traffic from Route 38, just on the other side of the trees. As a teenager, I often walked down the street this facility was on on my way to football games. I think it was mostly undeveloped land, maybe a few historic houses that had been leveled to make way for this facility for the old, the sick, the newly rehabilitated. I pointed to the trees in various directions, telling where the bank was, the eye doctor center that was once a florist. We once lived not far from this facility, in a house she and I shared with my brother, a home from another lifetime ago.
She was happy and so was I. I will remember this simple moment for the rest of my life.
Once inside, I steered her back into her room with a good view of her TV. I had to go, time to grocery shop and return to my world with my girls, my world outside the prison she now faces, this prison of poor health. I am so lucky to have this time with my mother. I am grateful for every day, every moment, every time I have ever been able to call her and have her pick up the other end.
I don't know how scary the road ahead of us is but I have today. I will always have it. I will always love her, maybe more than anyone. Maybe even more than my own daughters. She has always been the only person who was ever really and truly mine.
Sunday, October 7, 2012
My Mama
Today was the day of the walk for Autism Research my mother and I usually attend with Billy. Last year was a beautiful, sun drenched day. My mom looked strong and proud as she put on her Team Billy T shirt and posed for a few photos with our tiny team.
What a difference a year makes. I am grateful for this year I've had with her. I'm grateful for every day. I am thankful for today, for yesterday, for the day before. My heart is full and heavy at the same time.
Yesterday, at the hospital, I sat in the only chair in my mom's tiny room. Eliza found her way onto my lap for a snuggle and soon after, Elena came up attempting to pull Eliza off my lap. As the girls fought over who got to sit in Mama's lap, my own mother, clearly disoriented, uncomfortable and in pain, said "Hey girls, I have an idea. When you go home tonight, go into the playroom and start picking up toys. And whoever picks up the most toys gets to sit on Mama's lap."
As Eliza got dramatic, saying "mama doesn't love me, she loves Elena better than me," my mom corrected firmly, telling Eliza that I feed her, I wash her clothes, I take her to school, I take her to dance class so "How can you say she doesn't love you."
My mama, my champion, my love.
I wrote something nice for her on Facebook, something everyone could see but now I can't remember it. My mother fought for her autistic son and talked her way into a career as a reporter in a time when women didn't work so much by walking into buildings and saying "I want to work." She is my hero, my best friend and one of the great loves of my life.
I think I said it better on facebook but you get my gist. I love my mama, and she loves me. I love my mama and she loves me.
I love my mama and she's sick and leaving me.
What a difference a year makes. I am grateful for this year I've had with her. I'm grateful for every day. I am thankful for today, for yesterday, for the day before. My heart is full and heavy at the same time.
Yesterday, at the hospital, I sat in the only chair in my mom's tiny room. Eliza found her way onto my lap for a snuggle and soon after, Elena came up attempting to pull Eliza off my lap. As the girls fought over who got to sit in Mama's lap, my own mother, clearly disoriented, uncomfortable and in pain, said "Hey girls, I have an idea. When you go home tonight, go into the playroom and start picking up toys. And whoever picks up the most toys gets to sit on Mama's lap."
As Eliza got dramatic, saying "mama doesn't love me, she loves Elena better than me," my mom corrected firmly, telling Eliza that I feed her, I wash her clothes, I take her to school, I take her to dance class so "How can you say she doesn't love you."
My mama, my champion, my love.
I wrote something nice for her on Facebook, something everyone could see but now I can't remember it. My mother fought for her autistic son and talked her way into a career as a reporter in a time when women didn't work so much by walking into buildings and saying "I want to work." She is my hero, my best friend and one of the great loves of my life.
I think I said it better on facebook but you get my gist. I love my mama, and she loves me. I love my mama and she loves me.
I love my mama and she's sick and leaving me.
Saturday, October 6, 2012
But I have to
So my Mom was fine and now she's not. Tonight, I wept so loudly with such force, Eliza covered her ears. I probably scared her. As her mother, I should try to control myself, to not let her see me like this. But I couldn't hold it in and I'm not sure I can. I know I am their mother and part of the mother manual reads something like "don't scare the heck out of your kids with voluminous, athletic weeping."
Eliza told me I cried louder than Elena which means I cried pretty damned loudly.
I took mom to the hospital a week ago after finding her too weak to take care of herself. I'd been there exactly a week earlier and though she was actively complaining about hemorrhoid pain, she seemed otherwise okay. I returned to work during the week and she was fine on Tuesday when I spoke to her. By Thursday, she could barely speak. On Friday, I seriously wondered if I should leave work to take her to the hospital. Sending over a neighbor, I toughed out the day and prepared for the worst on Saturday. The fact that she went to the hospital without a fight shows how badly she felt.
Feeling somewhat secure by the fact that she was in the hospital I returned to work. But as the week wore on, all kind of insanity took flight. She couldn't speak directly so various nurses and doctor workers fielded my phone calls. I extracted as much information as I could, a lot of clinical, a lot of in downright untrue. By Friday, when I finally made it back to the hospital, I practically ran down the long, sun drenched corridor to her room.
I found her high on Percoset, happy, and seemingly much improved from how I'd left her. Things are not great, but she looked better and that gave me hope. But there was no sign that she could get out of bed on her own. We are on that point now where she can't take care of herself. So here we are.
Today didn't start out as a bad day. When I called the hospital, they told me physical therapy was there and they hoped to release her to a rehab facility. I think the plan is to try to get her stronger so she can go home with the aid of palliative care and, gulp, hospice. I cried upon hearing the H word, but seeing her smile yesterday buoyed me tremendously. A few hours later, the hospital called to ask me if I could take her to rehab and her insurance would not cover transport. I loaded up the girls and off we went.
Things did not go well from this point forward. Nothing awful happened but let's just say my mother was in a far worse state than she had been yesterday. My hopes were crushed. On top of her sorry demeanor and dazed, terrified expression, there was snag that prevented her release for a few hours. The girls, as always, handled the time at the hospital well but it was stressful. Finally she was released but she moaned in pain for much of our ride to the rehab place. Upon our arrival, I found her completely incapable of getting out of the car on her own. When a woman showed up with a wheelchair, my mother still could not get out of the car. The attendant didn't know how to help and sent for a large male orderly who took what felt like an eternity to arrive on the scene. My girls amused themselves by rushing in and out of the automatic doors, an activity I knew I should suppress but somehow couldn't. It took everything out of me to keep it together as I watched my mother wait for the attendant, completely incapable of doing something she'd done when I dropped her at the hospital a week ago.
After finally getting her settled in her new room, my girls desperate for dinner, I took off. I headed home and chose to park in the back lot behind my building as it's safer to park there on weekends. Well not this weekend because my neighbor chose today to back right into my car door. It was an accident, she felt terrible but then I lost it, crying in my car. Everyone was okay, the car will be fixed, it is yet another thing to add to my to do list.
But there it is, some pretty bad timing. I can't shake the sound of my mother's moaning. Or the way Eliza clung to her at the hospital last night. When I cried, big shaking, earthquake causing sobs tonight, I just said the same thing over and over again.
I want my mother.
In the car on the way over on the radio
I can't breath without you, but I have to.
Eliza told me I cried louder than Elena which means I cried pretty damned loudly.
I took mom to the hospital a week ago after finding her too weak to take care of herself. I'd been there exactly a week earlier and though she was actively complaining about hemorrhoid pain, she seemed otherwise okay. I returned to work during the week and she was fine on Tuesday when I spoke to her. By Thursday, she could barely speak. On Friday, I seriously wondered if I should leave work to take her to the hospital. Sending over a neighbor, I toughed out the day and prepared for the worst on Saturday. The fact that she went to the hospital without a fight shows how badly she felt.
Feeling somewhat secure by the fact that she was in the hospital I returned to work. But as the week wore on, all kind of insanity took flight. She couldn't speak directly so various nurses and doctor workers fielded my phone calls. I extracted as much information as I could, a lot of clinical, a lot of in downright untrue. By Friday, when I finally made it back to the hospital, I practically ran down the long, sun drenched corridor to her room.
I found her high on Percoset, happy, and seemingly much improved from how I'd left her. Things are not great, but she looked better and that gave me hope. But there was no sign that she could get out of bed on her own. We are on that point now where she can't take care of herself. So here we are.
Today didn't start out as a bad day. When I called the hospital, they told me physical therapy was there and they hoped to release her to a rehab facility. I think the plan is to try to get her stronger so she can go home with the aid of palliative care and, gulp, hospice. I cried upon hearing the H word, but seeing her smile yesterday buoyed me tremendously. A few hours later, the hospital called to ask me if I could take her to rehab and her insurance would not cover transport. I loaded up the girls and off we went.
Things did not go well from this point forward. Nothing awful happened but let's just say my mother was in a far worse state than she had been yesterday. My hopes were crushed. On top of her sorry demeanor and dazed, terrified expression, there was snag that prevented her release for a few hours. The girls, as always, handled the time at the hospital well but it was stressful. Finally she was released but she moaned in pain for much of our ride to the rehab place. Upon our arrival, I found her completely incapable of getting out of the car on her own. When a woman showed up with a wheelchair, my mother still could not get out of the car. The attendant didn't know how to help and sent for a large male orderly who took what felt like an eternity to arrive on the scene. My girls amused themselves by rushing in and out of the automatic doors, an activity I knew I should suppress but somehow couldn't. It took everything out of me to keep it together as I watched my mother wait for the attendant, completely incapable of doing something she'd done when I dropped her at the hospital a week ago.
After finally getting her settled in her new room, my girls desperate for dinner, I took off. I headed home and chose to park in the back lot behind my building as it's safer to park there on weekends. Well not this weekend because my neighbor chose today to back right into my car door. It was an accident, she felt terrible but then I lost it, crying in my car. Everyone was okay, the car will be fixed, it is yet another thing to add to my to do list.
But there it is, some pretty bad timing. I can't shake the sound of my mother's moaning. Or the way Eliza clung to her at the hospital last night. When I cried, big shaking, earthquake causing sobs tonight, I just said the same thing over and over again.
I want my mother.
In the car on the way over on the radio
I can't breath without you, but I have to.
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