God doesn't give you more than you can handle. It's one of those sayings like everything happens for a reason that doesn't sit right with me. Still, this was my prayer today:
I can't handle more. Please.
My dad got very ill suddenly back in October. He was taken by ambulance to the hospital with a raging fever. "Sepsis," my sister told me when she called. Hearing the word, I could see it on Henry's death certificate. The word infiltrated my brain, spreading, growing, like the infection itself as I waited for more news, tried to figure out if I needed to go.
I did go that afternoon. As soon as I parked in the hospital garage, I was in in hospital mode—purposeful, quick, tense. I figured out where the stairs were and how to wend the maze that all hospitals seem to be. When I went in to see him, my dad was joking, shaken, but himself. They figured out the source of the problem. Treated it, got a bunch of antibiotics in him, sent him home with a plan for surgery in several weeks.
My dad had surgery on Thursday. It seemed to go well. Thursday night, he joked about going to work on Monday. Yesterday he was in a lot of pain. Today more. And he didn't seem right.
My dad was rehospitalized this evening. We're in the waiting stage now, waiting to see if a CT scan gives useful information. Right now, we don't know if there is really something to worry about. I'm waiting for the call, or if it's really late, an email from my sister and I keep thinking: I can't handle more. December is enough already. I can't handle more. Please.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Saturday, December 7, 2013
Tuesday, April 23, 2013
Care giver
I was stunned to find out that one of my all time favorite nurses died yesterday.
If I had been asked to pick one person from the whole hospital to provide Henry's care, it would have been her. Not a surgeon who might have saved his life or a specialist who might understand his condition better than anyone else, but Cindy. I would have picked her because she knew him. She knew how he reacted to meds and that when he wasn't doing well that turning him onto his left side was trouble. She knew what he needed medically, but she gave him what he needed as a person, as a baby too. She talked to him while she changed him. She smiled at him with her face and her voice. I was able to take a break when she was on because I knew she was on it.
She took great care of my baby, but she took good care of me too. She answered my questions and helped me talk to the right people when she couldn't. She made sure doctors knew I had been waiting to see them. She knew when I was really scared and talked me through it. On the day Henry was getting discharged from the CICU for the second time during our long stay, I was a mess. It was supposed to be a happy day, a step closer to home, a sign he was getting better, but I knew it meant less support, fear of leaving his room, sleeplessness, and of course the last time we were on the floor he coded after a week or so of me saying "Something's not right." She talked me through that anxiety and helped me formulate a plan. We talked about what I knew and when to worry. In the middle of piles of paperwork to move him down the hall from the care of one unit to the next, she sat down and talked to me until I calmed down.
She was one of the nurses who came out to say goodbye the day we were finally discharged. She left a tearful message on our answering machine when he died. She is very much part of Henry's story, and I am sad she is gone.
If I had been asked to pick one person from the whole hospital to provide Henry's care, it would have been her. Not a surgeon who might have saved his life or a specialist who might understand his condition better than anyone else, but Cindy. I would have picked her because she knew him. She knew how he reacted to meds and that when he wasn't doing well that turning him onto his left side was trouble. She knew what he needed medically, but she gave him what he needed as a person, as a baby too. She talked to him while she changed him. She smiled at him with her face and her voice. I was able to take a break when she was on because I knew she was on it.
She took great care of my baby, but she took good care of me too. She answered my questions and helped me talk to the right people when she couldn't. She made sure doctors knew I had been waiting to see them. She knew when I was really scared and talked me through it. On the day Henry was getting discharged from the CICU for the second time during our long stay, I was a mess. It was supposed to be a happy day, a step closer to home, a sign he was getting better, but I knew it meant less support, fear of leaving his room, sleeplessness, and of course the last time we were on the floor he coded after a week or so of me saying "Something's not right." She talked me through that anxiety and helped me formulate a plan. We talked about what I knew and when to worry. In the middle of piles of paperwork to move him down the hall from the care of one unit to the next, she sat down and talked to me until I calmed down.
She was one of the nurses who came out to say goodbye the day we were finally discharged. She left a tearful message on our answering machine when he died. She is very much part of Henry's story, and I am sad she is gone.
Tuesday, November 8, 2011
Love for today . . . and tomorrow
A few weeks back, the Dragon Mom article kept popping up on Facebook. I gave a heavy, knowing sigh when I read, "finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go." I know what it is to do that, but I don't know what it is to live through my son's life knowing I'll have to do that.
Instead, I had a really sick baby who was expected to live. There would be meds and follow-up appointments and perhaps more surgery or other procedures. There would be equipment to figure out and insurance and other programs to navigate. It would not be easy, but we worked under the assumption that Henry would make it. He'd get through the ups and downs and interminable hospital stay and be okay. The definition of okay kept shifting, as much as I tried to pin it down, but okay kept being the assumption.
I loved him constantly, but I had to remind myself, more than once, to live in the day. Before Henry's surgery as we were struggling with the oxygen monitor's frequent beeping and trying to fatten him up, I kept looking ahead, counting down days, weeks, months til he could have his surgery and lose the oxygen and we could really start our life. Except the clock was already ticking. "I'm wishing away his life," I realized, long before I knew how short a life he would have. So I reset and focused on enjoying him as he was. I hated that oxygen monitor, but I loved my boy and our peaceful mornings. I focused on what he could do, not what his peers were doing, not what he couldn't do. And at the same time I set up Early Intervention to help him do all that he could do.
When Henry was in the hospital later, I at first refused to bring things from home—blankets, clothes, toys, music. Having stuff at the hospital felt like admitting we were going to be staying, and all I wanted to do was get my boy home. It took me a long time to realize that I was doing it again, wishing away his life in wanting to get out of a sucky situation. "This is his life," I reminded myself. As much as I hated living there, hated the anxiety and the separation from Brian and the machines and the lack of privacy, it was his life, and with that realization I changed. I read to him more and played music and set up routines and took pictures. I brought blankets and clothes and hung up the cards people sent us.
Even as I settled in, I told him about what we would do when we got out. I told him about the friends he would meet and the farm down the road. I told him about riding the school bus when he got bigger and working in our garden. I told him about where we lived and about the vastness of the ocean that he would finally see some day. I loved him for the day and believed the future for him.
I had stripped down my dreams and expectations, but I believed he would come home. I believed he would one day go to school. I believed he would visit my family. I believed he would live and grow.
We don't know how long we have with our children. We should love them right now, today. But, unless we know they have no future, parenting isn't just loving them here right now, part of parenting is believing they will grow up and helping them along the way.
The idea of just loving them today, noble as it sounds, isn't possible long term. Or rather, loving my children today is possible, but acting solely on that isn't. I have to say no sometimes because things aren't safe or healthy. I have to say that I'm working sometimes, not because I'm attached to furthering my career, but because part of parenting is keeping a roof over my kids' heads and putting food in their bellies.
I try to find balance. I try to do my work and get food on the table and clothes clean and still say yes when Kathleen says, "Wanna play play dough?" or "Read a book" or "Let's put on crowns and take pictures." I love my kids today. It's why I set up a cozy corner under the dining room table and lay down with them to read story after story after story even as I felt my back seizing up with the sciatic problem that's plagued me since my first pregnancy. It's why we turn up the music and dance together as a family most nights before bedtime. It's why even when Kathleen doesn't get a story before bed because of all her stalling tactics in getting ready, I sing the "Kakeen" song to her, the song I made up that tells her how very loved and wanted she is.
Yes, by all means love your child today. Take time to notice them as they are, as they grow, as they change. Take time to snuggle and sing and read stories and listen to them. But, unless you have a reason not to, believe that you will watch them grow and change. That belief is hope and love too.
Wednesday, October 5, 2011
Before the frost
There is a frost/freeze warning on tonight, so between my run and dinner I hustled out to the garden to pick whatever was left.
Now basil and parsley is chopped and in the freezer. Hot peppers are ready for drying. Tomatoes are freezing or waiting for a bit more red to color their cheeks. Chard, mustard greens, and beet greens are in the fridge. Green beans are blanched and in the freezer. Flowers are on the table and the window sill and in my office and between Henry's picture and memory light. Extra sage and parsley are tucked in among the zinnias and dahlias, just because it was there.
Maybe it won't freeze tonight and we'll eke out a few more nice days. Perhaps I'll pick a bit more parsley tomorrow or find some peppers I left in my haste. Maybe we'll get a handful more green beans (or not . . . I'm getting a bit sick of them). If not tonight, soon. Really, the garden is done, but for the clean up.
My neighbors have returned from their summer cottage in Maine. The leaves have been coming down for a while now, though they still have a way to go.
It smells cold and I put on layer after layer. I long for shepherd's pie and butternut squash soup and roasted beets and pork pie with apples. I've switched to red wine (or dark beer or hard cider).
I'm settling into cozy.
In 2007, summer lingered into November. The days were strangely warm. The leaves stayed green. I was at the hospital with Henry, and the unseasonal weather was part of the surrealness of my life. It was if summer knew my boy only had one growing season and gave him everything it had.
I remember bending over my big belly in May, using hand tools to loosen the soil, turning over little sections bit by bit, sprinkling lettuce seeds, setting tomato plants from the farmer's market.
I don't know what else I planted that year, but I remember thinking that if I could just get some things into the ground, we'd be able to eat something later. I didn't think I'd have much time for our garden. I expected to be too busy with a newborn. I didn't expect doctor's appointments nearly daily or oxygen or surgery. I didn't expect to be living away from home come tomato season.
Instead of running out to my garden for some greens or a bit of basil, I walked busy streets. I discovered a rose garden in a city park. I watched the leaves stay green and imagined it wasn't really fall.
I was not listening to the news, so when the weather forecasters said It's going to be a cold one tomorrow and Bundle up I missed the message. I went to bed in summer, got up the next day and dressed in my usual capris and sandals, and started over to Henry's room, only to be greeted by a blast of cold air as the morning shift hurried in in winter coats and hats and mittens.
The change is not that dramatic this year. Fall has been creeping in with cooler days, mostly, and yellowing and browning leaves. The garden has been slowing down. I'm ready for fall. Still, that it is October surprises me. Weren't Brian and I just outside in a cold rain rototilling the garden? Wasn't Henry's birthday and my careful tending of his garden only yesterday?
When was it that I hovered over his bed on a strangely warm October day? It seems so near and far. He came to me in the tenderness of spring. I said goodbye to him in the darkness of deep winter. Sunmer was fear and the golden glow of fresh beginnings. Fall was not garden clean up or glorious cool days but fear and hope and hope and hope. I did not see it for the winding down that it was.
Fall is still woods smoke and crunchy leaves and crisp apples and orange pumpkins, but it is also hand sanitizer and the beep of monitors and cafeteria food and watchful waiting and believing. Fall stirs up this part of my memory, but doesn't drag me down. I still revel in being here at home clearing out the garden, pulling clothes out of the attic, popping casseroles in the oven, planning Halloween costumes, planning hikes and apple picking and baking. Fall is settling down but invigorating too. I'm ready.
Sunday, November 7, 2010
Headstones and hospital programs
Friday we drove up to visit my parents, but really to look at stones. We still, almost three years later, don't have a headstone for Henry. Making that decision was more than either of us could handle when Henry first died. Then grief was heavy, Brian was in nursing school, I was pregnant, we had a new baby, Brian was still in school . . . we didn't have the time to look or the energy to talk about what we wanted. Still it bothered me that he did not have a marker, and we finally started talking about it this year. We talked about getting a piece of granite from my hometown. I never got to bring him there, so we thought we'd bring a piece to him.
While my mom chased Kathleen around an very old cemetery, Brian and I poked through a pile of stones in the yard of a family friend. I wasn't sure we'd find anything. I kept telling Brian we could always get a stone from someplace else if we didn't find what we wanted. Then he found it. Not too big, not too small. A flat face for his name, curved on the back, not quite a perfect arch at the top. It looked natural, but workable—just what we wanted.
We still need somebody to carve and install the stone, but we are one step closer to having a marker on his grave. One step closer, maybe, to keeping people from driving over him. One step closer to anybody being able to find him.
***
Saturday we left Kathleen with my parents and drove into Boston for a program that Children's runs each November for grieving families.
The timing good for me. It feels right to go back in the fall, during the time that I lived there with him. It feels right to make space for him, for grieving, for talking about all of it, right before we head into the darkest days for me.
Strangely, it feels something like a reunion. We saw our chaplain and the woman I knew best from the family life center and the psychologist and a couple from our grief group and a mom who had helped me a lot while Henry was in the hospital and another mom who was in our small breakout group last year. There was that odd happy to see people feeling, despite our reason for being there.
It was an exhausting day, but a good one. I talked about the things that seem like the big issues right now for me: telling new people I meet about Henry and December. I cried the hardest talking about what I want for Kathleen and this new baby—fun birthdays, happy Christmases—and my fears that the weight of December won't let me give them that. These are the things I struggle with right now.
***
When we left our house on Friday, I thought of it as a grief weekend, thought it might be kind of depressing. It wasn't though: we found the stone; I talked to people have I haven't talked to in a long time; I talked about Henry. It was sad, exhausting, but not depressing.
The moment that sticks with me most clearly isn't sad at all. Friday evening we brought Kathleen over to see my grandmother. She was shy for about the first five minutes; then she was running around with her cousin like she owned the place. When it was time to go, I told her to go say goodbye to Big Nana. Kathleen ran right over to her and gave her a big hug and loud kiss, and my grandmother gave one of her famous neck-breaking hugs and sang "I love you a bushel and a peck and a hug around the neck. You bet your big blue eyes I do!"
Going to look for the stone, the extra night with my family was a last minute plan, but when I think of this weekend, the first picture I see is Kathleen with her arms around my Nana and it makes me smile.
While my mom chased Kathleen around an very old cemetery, Brian and I poked through a pile of stones in the yard of a family friend. I wasn't sure we'd find anything. I kept telling Brian we could always get a stone from someplace else if we didn't find what we wanted. Then he found it. Not too big, not too small. A flat face for his name, curved on the back, not quite a perfect arch at the top. It looked natural, but workable—just what we wanted.
We still need somebody to carve and install the stone, but we are one step closer to having a marker on his grave. One step closer, maybe, to keeping people from driving over him. One step closer to anybody being able to find him.
***
Saturday we left Kathleen with my parents and drove into Boston for a program that Children's runs each November for grieving families.
The timing good for me. It feels right to go back in the fall, during the time that I lived there with him. It feels right to make space for him, for grieving, for talking about all of it, right before we head into the darkest days for me.
Strangely, it feels something like a reunion. We saw our chaplain and the woman I knew best from the family life center and the psychologist and a couple from our grief group and a mom who had helped me a lot while Henry was in the hospital and another mom who was in our small breakout group last year. There was that odd happy to see people feeling, despite our reason for being there.
It was an exhausting day, but a good one. I talked about the things that seem like the big issues right now for me: telling new people I meet about Henry and December. I cried the hardest talking about what I want for Kathleen and this new baby—fun birthdays, happy Christmases—and my fears that the weight of December won't let me give them that. These are the things I struggle with right now.
***
When we left our house on Friday, I thought of it as a grief weekend, thought it might be kind of depressing. It wasn't though: we found the stone; I talked to people have I haven't talked to in a long time; I talked about Henry. It was sad, exhausting, but not depressing.
The moment that sticks with me most clearly isn't sad at all. Friday evening we brought Kathleen over to see my grandmother. She was shy for about the first five minutes; then she was running around with her cousin like she owned the place. When it was time to go, I told her to go say goodbye to Big Nana. Kathleen ran right over to her and gave her a big hug and loud kiss, and my grandmother gave one of her famous neck-breaking hugs and sang "I love you a bushel and a peck and a hug around the neck. You bet your big blue eyes I do!"
Going to look for the stone, the extra night with my family was a last minute plan, but when I think of this weekend, the first picture I see is Kathleen with her arms around my Nana and it makes me smile.
Friday, September 4, 2009
Sick Visit
We took Kathleen in for a sick visit today. She has Coxackie virus. We were told to give her Tylenol and expect her to have a fever for a couple more days and then a rash. No big deal. They've been seeing a lot of it.
***
Kathleen has been fussy and clingy for the past few days. I thought maybe it was just the cold she's had lingering. Then yesterday, she was hot. I took her temperature under her arm and it was a little high, so I got a rectal and it was normal. Odd, but I checked it twice. No fever. But I knew she wasn't herself.
She woke up all smiles this morning, but wouldn't eat most of her breakfast or most of her lunch. Brian took her for a walk in the afternoon and noticed she was quite warm again. This time, the underarm thermometer clearly picked up a fever, and the rectal agreed—102.6.
So I called the pediatrician's office, while Brian got our screeching baby dressed. Despite the dread in my stomach, I half expected them to tell me to give her some Tylenol and call back if the fever didn't go down, but the nurse said they better see her. So I gave Kathleen some Tylenol and a bottle and sat and rocked with her hot head on my chest for the hour and a half before we could go.
Maybe I should bring a change of clothes with me.
This is the irrational part of my brain talking. The part of my brain that reminds me that the last time I brought my baby in for a sick visit in September, he just seemed to have a cold. And then I was in an ambulance and then my baby was on a ventilator and then . . .
Wait!
My rational brain says.
He was really sick. He had just had surgery, had a bad heart, lung problems. It wasn't really the cold.
This part of my brain has let me go through my day for the last week as Kathleen sniffled and coughed and otherwise seemed just fine. But with this sick visit, the irrational tried to take over.
I had been struggling with September already, knowing that the day that was the beginning of the long-drawn out end was approaching, that day when the pediatrician put oxygen on Henry and called an ambulance, thus beginning a three-month hospitalization. That memory has been bubbling around under the surface, and it boiled over today when we carried Kathleen in to see the doctor.
***
In another world, I would simply be wishing Kathleen would feel better and lamenting that I had to cancel a visit from friend Alexa. No tapas and sangria for me tomorrow.
But here I am in babylost world, where everything looks different. I do hope my baby girl feels better. I am probably more patient as I sit with her feverish body snuggled into me, poor thing, than I would be in that other world. But I am more scared too, because I know what the inside of an ambulance looks like, I know how the PICU sounds, and I know just how quickly things can change from okay to unbelievably not okay. I believe she will be fine, I do, but I can't banish the anxiety.
So tonight, I'll give her Tylenol and sleep with her close and take deep breaths and tell myself she will be okay. In the next few days, I'll try to stay calm as I wait for her fever to clear, her fussiness to pass, my smiley girl to come back. And over the next few months, I'll face those memories again, the ones from September to December 2007. They've started, with a vengeance, today.
***
Kathleen has been fussy and clingy for the past few days. I thought maybe it was just the cold she's had lingering. Then yesterday, she was hot. I took her temperature under her arm and it was a little high, so I got a rectal and it was normal. Odd, but I checked it twice. No fever. But I knew she wasn't herself.
She woke up all smiles this morning, but wouldn't eat most of her breakfast or most of her lunch. Brian took her for a walk in the afternoon and noticed she was quite warm again. This time, the underarm thermometer clearly picked up a fever, and the rectal agreed—102.6.
So I called the pediatrician's office, while Brian got our screeching baby dressed. Despite the dread in my stomach, I half expected them to tell me to give her some Tylenol and call back if the fever didn't go down, but the nurse said they better see her. So I gave Kathleen some Tylenol and a bottle and sat and rocked with her hot head on my chest for the hour and a half before we could go.
Maybe I should bring a change of clothes with me.
This is the irrational part of my brain talking. The part of my brain that reminds me that the last time I brought my baby in for a sick visit in September, he just seemed to have a cold. And then I was in an ambulance and then my baby was on a ventilator and then . . .
Wait!
My rational brain says.
He was really sick. He had just had surgery, had a bad heart, lung problems. It wasn't really the cold.
This part of my brain has let me go through my day for the last week as Kathleen sniffled and coughed and otherwise seemed just fine. But with this sick visit, the irrational tried to take over.
I had been struggling with September already, knowing that the day that was the beginning of the long-drawn out end was approaching, that day when the pediatrician put oxygen on Henry and called an ambulance, thus beginning a three-month hospitalization. That memory has been bubbling around under the surface, and it boiled over today when we carried Kathleen in to see the doctor.
***
In another world, I would simply be wishing Kathleen would feel better and lamenting that I had to cancel a visit from friend Alexa. No tapas and sangria for me tomorrow.
But here I am in babylost world, where everything looks different. I do hope my baby girl feels better. I am probably more patient as I sit with her feverish body snuggled into me, poor thing, than I would be in that other world. But I am more scared too, because I know what the inside of an ambulance looks like, I know how the PICU sounds, and I know just how quickly things can change from okay to unbelievably not okay. I believe she will be fine, I do, but I can't banish the anxiety.
So tonight, I'll give her Tylenol and sleep with her close and take deep breaths and tell myself she will be okay. In the next few days, I'll try to stay calm as I wait for her fever to clear, her fussiness to pass, my smiley girl to come back. And over the next few months, I'll face those memories again, the ones from September to December 2007. They've started, with a vengeance, today.
Friday, August 28, 2009
This Lovely Life
This morning Kathleen woke up early. I fed her, changed her, and handed her to Brian while I made coffee. And she fell back asleep. The house was wonderfully quiet, and I sat at the kitchen table with my coffee and warm muffins and finished reading Vicki Forman's This Lovely Life. I almost got online right away to tell you to go get a copy and read it, but I need to sit with it for a bit.
So here I am, some 12+ hours later telling you to get a copy and read it. It is not easy reading: I made myself read something else for a few nights, though I wanted to continue, because my mind and emotions got worked up and I couldn't sleep. Vicki's experience was far from my own, but her descriptions brought me back to the hospital, to the fearful days at home of oxygen and complex med schedules, to a world where "okay" and "normal" shifts each time you think you almost have your footing in the new world.
Before I started reading This Lovely Life I expected a book about parenting a child with a disability. I knew Vicki's son, Evan, had special needs and that Vicki had written on the subject elsewhere. The subtitle of the book, A Memoir of Premature Motherhood, gave me a different expectation. And then I started reading this book about being a mother and about figuring out what that means when you don't get the expected 9 months = healthy baby scenario. I read about a journey from grief to self-forgiveness, from the nightmare of this can't be happening to the still challenging and heartbreaking, but lovely, life.
You can read more about the book here.
So here I am, some 12+ hours later telling you to get a copy and read it. It is not easy reading: I made myself read something else for a few nights, though I wanted to continue, because my mind and emotions got worked up and I couldn't sleep. Vicki's experience was far from my own, but her descriptions brought me back to the hospital, to the fearful days at home of oxygen and complex med schedules, to a world where "okay" and "normal" shifts each time you think you almost have your footing in the new world.
Before I started reading This Lovely Life I expected a book about parenting a child with a disability. I knew Vicki's son, Evan, had special needs and that Vicki had written on the subject elsewhere. The subtitle of the book, A Memoir of Premature Motherhood, gave me a different expectation. And then I started reading this book about being a mother and about figuring out what that means when you don't get the expected 9 months = healthy baby scenario. I read about a journey from grief to self-forgiveness, from the nightmare of this can't be happening to the still challenging and heartbreaking, but lovely, life.
You can read more about the book here.
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