Daughter Lisa deals with Crohn’s: Frontiers of the pain of parenthood
“Daddeeeee, it huuuuurts!”
It’s the worst sound in the world. We’ve all heard it. If not exactly that, then substitute m’s for the d’s and that ought to include most of you. It’s not the sort of hurt that you can handle with a “kiss the boo-boo” treatment. It’s the kind that has no name, at least not right now, and wouldn’t for another eighteen hours, sixteen of which would be spent at the emergency room at Children’s Hospital, a long ninety-minute drive in the middle of a very dark winter night. But right now, it was just a nameless impossible-to-deal-with pain that was attacking my little ten-year old daughter. The brave one. The fearless one who always looked out for her seven-year-old brother.
Lisa was the one the bullies always watched out for, and here she lay on her bed, limp from screaming. The pain just wouldn’t go away. I held her hand. I had her squeeze my thumbs with all her might to transfer the pain to me. I had her bite on a wet face cloth and sit up and lie down on her belly and then roll over on her back, and just nothing would make it stop. She finally stopped screaming for a minute or two, but only because she was so exhausted that she had no more breath to even talk.
“Daddy, help me. Please help me. Make it go away. Please just make it go away for a minute. Just for a minute.”
“Okay, honey. Okay. Just hold on, and it has to stop. It’s just a stomachache. What did you eat?”
“NOTHING! Daddy, I didn’t eat hardly anything. Just make it stop. I didn’t do anything bad. Make it stop hurting.”
“Okay. Okay. Now you have to concentrate. Look at me. Look at me. Look at my eyes. Come on, honey. Look up at me and hold on to my thumb. Look me in the eyes.”
She raised her little head and then dropped back down on the pillow wet with tears, her black curls plastered to her forehead with perspiration.
“I can’t, Daddy. I can’t. Please. Please just make it stop.”
“You can, honey. You can. You can at least try. You have to try. I don’t know what it is, but you have to try. Look at me. Hold my thumb and squeeze hard. Lisa, look at me.”
And she did. She picked up her head and grabbed on to both of my thumbs with both of her hands and squeezed with all her might. And she looked right in my eyes, and I saw the pain and knew then that I had to get her to the hospital. I had to make it stop. I was the daddy. It was my job. She had tried.
“Call Dr. Katz!”
“Just squeeze my thumb. Squeeze, squeeze, squeeze. Think about the pain going into my thumb.”
I squeeze harder. It’s not working. “Call Dr. Katz, pleeease!” The doctors didn’t figure out what was wrong with me quite as quickly as you might think.
Lisa Maddock
Of course you know that they don’t make the pain go away in emergency rooms. Not at all. In fact, they won’t treat you or your ten-year-old daughter with anything until the intern gets a look and then the doctor gets a look and then the specialist gets a look and they get to run their tests and take their pictures and develop their film and have the specialists look again and again because they don’t want to mask the symptoms. If they mask the symptoms with painkillers, they may not be able to figure out what’s wrong and won’t know what to do to fix her.
So my little Lisa was wheeled into the ER on a gurney at 11 PM and got no medication until five hours of pain later. At 4 AM, my seven-year-old son was comfortably asleep across my lap, and they gave my daughter a massive dose of Demerol even though they still didn’t really know what was wrong with her or how to fix her. By 9 AM that morning, they began to figure out what was wrong with her. Now it’s twenty-one years later, and they still don’t know how to fix her.
There were in fact many trips to the emergency room. There were countless tests and not enough drugs to figure out the problem and take the pain away.
Crohn’s disease is a not-so-rare degenerative disease of the digestive system. It is a chronic, incurable disease that is corrosive in nature and can appear at any site along the digestive system, from a chancre on the tip of your tongue to an ulcer in your stomach to granulomas, fistulas, and lesions on your colon and fissures in your anus. It eats away at your tissues unless it is magically put into remission by a combination of heavy-duty steroids that would make today’s NFL players back off with caution. Steroids, sulfa drugs, and a pantheon of others that try and put this monstrous disease to sleep for a month or a year or maybe two.
The physical consequences patients look forward to include a series of bowel resections, colostomies, ileostomies, and more. Back in 1983, when it first attacked our daughter, very little was known about it. Not much more is known now. There was a recent promising breakthrough in the genetic medicine area, but who knows? When the doctor told us our Lisa had Crohn’s disease, we thought he was talking about something that afflicted old witches. When he gave us the brochures and we saw the spelling, we found that somebody named Crohn had discovered it earlier in the century but hadn’t had time to find the cure. It also told us we should not be looking forward to having grandchildren.
My dad used to tell me that Crohn’s disease was a tinybug living in my intestines that was munching away at them. All the medicine they pumped into my little body was to make the bug go to sleep. I remember pleading with him, asking why the bug won’t go to sleep. “Soon, honey, the bug will sleep soon.”
The disease wreaks havoc on the internal workings of victims, and what’s left intact is often further impaired by the medication required to treat the symptoms. Infertility seemed inevitable. It wasn’t at the top of our list of concerns back then. Just surviving beyond her teen years without having a lot of bags attached to her underwear was all that was on our minds. My wife and I grew closer. We had an active seven-year-old son, Daniel, who would also join in the family effort to survive this. It wasn’t easy and still isn’t. My son has his own story of dealing with a world that was running away from him.
The enormous pain Lisa dealt with receded by that first evening and early morning. The drugs did their job. The problem was that eating anything at all was going to aggravate the disease that seemed to be active in her small intestine. Any food passing through the system might set off the pain. What was happening at the time was unknowable, but the disease was causing a blockage that would flare up and then go out of control when food tried to pass where it couldn’t. If her intestine ruptured and burst, she could die fairly quickly. She didn’t eat for a day and then the inevitable. We were back to the ER.
The doctors sedated her and brought on the army of steroids. Within days, they had performed an operation to insert a semipermanent central line in her large jugular vein that would provide all the sustenance her little body would need for the next six weeks. She was provided 500 ml bottles of a white milky-looking substance that went directly into her IV and provided nourishment. Not a morsel would pass through her lips for forty-two days. They would provide a new bottle full of nourishment about every eight hours that would slowly enter through the central line IV. The bottles cost $500 each. We found that out one day when our Dano knocked over the tripod it hung from, sending it crashing to the floor.
My wife, Carol, and I adjusted our work schedules to always have one of us at the hospital to be with our daughter during the nonsleeping hours. We made arrangements for neighbors to help out with our son when possible. People help people. There were many days, mostly weekends, when our seven-year-old was a regular sixteen-hour visitor to the hospital along with us. He charmed all the nurses. But they were easy. I’m sure I wouldn’t be the first to compare nurses to angels.
Lisa was housed on the chronic care floor. Most all the other patients had cystic fibrosis. They were all kids. None of them would see adulthood. The courage we saw in those children day after day was something we all still remember. They faced their disease, their treatment, and their preemptive mortality with an attitude that made you realize the true nature of bravery. The nurses who treated them showed a different kind of courageous resilience I could never imagine.
We began to see Lisa’s illness in a much different light. Lisa felt lucky. Everything is relative. Small town living can be a wonderful thing. All the kids in her grade made a field trip to come and visit her in the hospital. Children in other grades did art projects to send get-well cards. It seemed as though the whole little town of Holliston, Massachusetts, cared about our Lisa.
We spent Christmas and New Year’s on the seventh floor of Children’s Hospital. The staff did everything possible to get every one of the patients that they could home for the holidays, even if they were to return in just a day or two. Home for Christmas was important. But there were still a few of us left on the floor during that time. There was no celebration. Those that were still there wouldn’t know the difference anyway. The next year, when Lisa was home, we all decided to go back to the seventh floor on Christmas Eve to count our blessings and to try to do what we could for the children there. We went shopping and picked out little presents for the patients too sick to leave and for all the nurses. We arrived before midnight and left the presents by their beds and at the nurse’s station. We vowed that we would come back every year at Christmas to remember how lucky we were and think of others. It was a nice thought that we didn’t fulfill. Life does go on, for better or worse. Maybe this year.
We would be back at the hospital many more times over the years. Lisa dealt with her disease and the inevitable surgeries and pain. Sometimes more painful than the disease were the effects the symptoms and treatment had on her life. The steroids blew her up like the Pillsbury Dough Boy. Dark facial hair came with the puffiness and is not exactly what a preteen and then teenager really wants to deal with. But it was either the Prednisone or the pain and more surgery. Kids are kids; and as the celebrity of being a patient wore off and she returned to school, the pudginess and facial hair drew their toll of taunts and snickers. It was a difficult adolescence.
It was interesting how people reacted to me when I was sick. I recall sitting in the front row of Miss Rocheford’s fifth grade language arts class. It hurt so much I couldn’t even sit up properly, and my face felt like it was always scrunched up in pain. She never even noticed. She only took note when I returned from my hospital stay blown up like a hairy Cabbage Patch Kid courtesy of all the steroids pumping through my ten-year old body.
I remember asking to go to the bathroom in Mr. Mazarro’s sixth grade science class. Before I could even get the words out, he was loudly telling me to go and not wait for the hall pass. That was a little embarrassing. I know he was just trying to be nice but all I had to do was pee...and my whole class ended up knowing about it.
I suppose it was better than Mr. Hardy’s seventh grade science class when I ran like hell to the bathroom to avoid an accident only to be publicly chastised for not taking the hall pass. That was beyond embarrassing. It was humiliating.
It wasn’t all bad though. I was a guest on the Good Day TV show to share my experiences as a kid living with Crohn’s and did a few interviews for clinical newsletters and fundraisers. That kind of stuff made me feel like I was able to do some good along with the bad hand I was dealt.
The kids in the cystic fibrosis ward stay with me in my heart. I’m pretty sure none of them are still around which is almost impossible to wrap my head around. You know, I was even jealous of them when we were in the hospital. They were allowed to order take-out Chinese food while I wasn’t allowed to eat anything. Perspective changes a lot doesn’t it?
I’ve blocked out a lot of those memories from my middle school years. Kids are mean at that age. Some adults weren’t much better, regardless of their intentions. I did my best to pretend everything was fine, which led to anxiety attacks and trips to a psychologist I didn’t want to talk to. Is it irony that I am now a professional social worker?
Once the anxiety attacks passed, I continued to try to live my life as an upbeat and smiley girl with a fast-developing sense of sarcasm and some emotional wall building. I still believe a cure will be discovered. I live my life. Is your life painless? Neither is mine.
Lisa into a very special person with an outrageous sense of humor and sarcastic wit. She became a very strong person with deep sensitivities. She recognized her own ongoing physical pain and dealt with it. She learned to recognize the pain of others and tried to help. She grew to be a mature adult, earned a Master’s in Social Work from Boston University and did her very best to help the children and families less fortunate than the rest of us. I don’t think she ever really learned to keep the “professional emotional distance” needed for long-term survival in that field. She just cared too much. But she tried.
As fate would have it, treatment for Crohn’s has progressed. In fact, it has progressed enough to give Lisa a chance to consider having a child, which she accomplished despite enormous flare-ups of the disease that made her new husband wonder what exactly he had gotten himself into. In order to get pregnant, Lisa had to go off almost all her medications. It was a decision she had to make. She decided she needed to at least try. Fertility needed a clean playing field to have a chance. It wasn’t going to be easy. Flare-ups and multiple surgeries followed the reduction in meds, but she soldiered on and tried to wait it out. She was able to conceive and suffered no flare ups during her pregnancy. After forty weeks of extreme discomfort, she gave birth to a healthy baby boy.
It’s been twenty-one years, and I’m still waiting for them to take the pain away. But you know what? There are a lot of people worse off than me. This isn’t going to kill me. It hasn’t stopped me from achieving my goals. I work in the field for which I’ve always had a passion; I have an incredible husband and the most perfect little boy. I have a pretty great dog too. These are the things that get me through the pain, now that my hands are too big for my daddy’s thumbs.
I am fortunate enough to have found an incredible partner in life who now lends his thumbs when the pain becomes too much. He had to consent for emergency surgery to be performed on me at 2 AM, six days after we got married. He waited alone all through the night. He even held my damaged intestine in his hand once the surgery was complete. Now that’s love! Or it’s a sick fascination with the small bowel. I choose the former. He’s waited patiently over the years through more surgeries and trial medications so we could become pregnant. My sweet little Jacob arrived five months ago. I recently noticed that he has been pooping a little more often than he had been. I’ve already made two calls to the pediatrician who has gently reassured me that this just sometimes happens with babies. She understands my “poop obsession.” He’s probably just teething.
And now she took a break from being a professional social worker to be a “professional” mom who is extremely anxious over any tummy aches that may pop up with her little son. Genetics seems to play an undetermined role in this disease. But so far, so good. Maybe this will be the year we all remember our promise to go back to Children’s Hospital for Christmas Eve. It’s better to be there because you choose to be.
And four years later, Lisa had a second son who she could actually breastfeed due to the rapid improvement of drug treatment that seems to be fighting a holding action against the disease. They still believe a cure is on the horizon. Lisa is back at her social work job and lives in Kuliouou Valley just west of Hawaii Kai. Not a bad place to be in.
So the good things always outweigh the bad. You just need to let go of the bad. Have I told you about my two incredible little boys I wasn’t sure I could have, my rock of a husband who weathers these storms with me and my sweet little dog?
“Daddeeeee, it huuuuurts!”
It’s the worst sound in the world. We’ve all heard it. If not exactly that, then substitute m’s for the d’s and that ought to include most of you. It’s not the sort of hurt that you can handle with a “kiss the boo-boo” treatment. It’s the kind that has no name, at least not right now, and wouldn’t for another eighteen hours, sixteen of which would be spent at the emergency room at Children’s Hospital, a long ninety-minute drive in the middle of a very dark winter night. But right now, it was just a nameless impossible-to-deal-with pain that was attacking my little ten-year old daughter. The brave one. The fearless one who always looked out for her seven-year-old brother.
Lisa was the one the bullies always watched out for, and here she lay on her bed, limp from screaming. The pain just wouldn’t go away. I held her hand. I had her squeeze my thumbs with all her might to transfer the pain to me. I had her bite on a wet face cloth and sit up and lie down on her belly and then roll over on her back, and just nothing would make it stop. She finally stopped screaming for a minute or two, but only because she was so exhausted that she had no more breath to even talk.
“Daddy, help me. Please help me. Make it go away. Please just make it go away for a minute. Just for a minute.”
“Okay, honey. Okay. Just hold on, and it has to stop. It’s just a stomachache. What did you eat?”
“NOTHING! Daddy, I didn’t eat hardly anything. Just make it stop. I didn’t do anything bad. Make it stop hurting.”
“Okay. Okay. Now you have to concentrate. Look at me. Look at me. Look at my eyes. Come on, honey. Look up at me and hold on to my thumb. Look me in the eyes.”
She raised her little head and then dropped back down on the pillow wet with tears, her black curls plastered to her forehead with perspiration.
“I can’t, Daddy. I can’t. Please. Please just make it stop.”
“You can, honey. You can. You can at least try. You have to try. I don’t know what it is, but you have to try. Look at me. Hold my thumb and squeeze hard. Lisa, look at me.”
And she did. She picked up her head and grabbed on to both of my thumbs with both of her hands and squeezed with all her might. And she looked right in my eyes, and I saw the pain and knew then that I had to get her to the hospital. I had to make it stop. I was the daddy. It was my job. She had tried.
“Call Dr. Katz!”
“Just squeeze my thumb. Squeeze, squeeze, squeeze. Think about the pain going into my thumb.”
I squeeze harder. It’s not working. “Call Dr. Katz, pleeease!” The doctors didn’t figure out what was wrong with me quite as quickly as you might think.
Lisa Maddock
Of course you know that they don’t make the pain go away in emergency rooms. Not at all. In fact, they won’t treat you or your ten-year-old daughter with anything until the intern gets a look and then the doctor gets a look and then the specialist gets a look and they get to run their tests and take their pictures and develop their film and have the specialists look again and again because they don’t want to mask the symptoms. If they mask the symptoms with painkillers, they may not be able to figure out what’s wrong and won’t know what to do to fix her.
So my little Lisa was wheeled into the ER on a gurney at 11 PM and got no medication until five hours of pain later. At 4 AM, my seven-year-old son was comfortably asleep across my lap, and they gave my daughter a massive dose of Demerol even though they still didn’t really know what was wrong with her or how to fix her. By 9 AM that morning, they began to figure out what was wrong with her. Now it’s twenty-one years later, and they still don’t know how to fix her.
There were in fact many trips to the emergency room. There were countless tests and not enough drugs to figure out the problem and take the pain away.
Crohn’s disease is a not-so-rare degenerative disease of the digestive system. It is a chronic, incurable disease that is corrosive in nature and can appear at any site along the digestive system, from a chancre on the tip of your tongue to an ulcer in your stomach to granulomas, fistulas, and lesions on your colon and fissures in your anus. It eats away at your tissues unless it is magically put into remission by a combination of heavy-duty steroids that would make today’s NFL players back off with caution. Steroids, sulfa drugs, and a pantheon of others that try and put this monstrous disease to sleep for a month or a year or maybe two.
The physical consequences patients look forward to include a series of bowel resections, colostomies, ileostomies, and more. Back in 1983, when it first attacked our daughter, very little was known about it. Not much more is known now. There was a recent promising breakthrough in the genetic medicine area, but who knows? When the doctor told us our Lisa had Crohn’s disease, we thought he was talking about something that afflicted old witches. When he gave us the brochures and we saw the spelling, we found that somebody named Crohn had discovered it earlier in the century but hadn’t had time to find the cure. It also told us we should not be looking forward to having grandchildren.
My dad used to tell me that Crohn’s disease was a tinybug living in my intestines that was munching away at them. All the medicine they pumped into my little body was to make the bug go to sleep. I remember pleading with him, asking why the bug won’t go to sleep. “Soon, honey, the bug will sleep soon.”
The disease wreaks havoc on the internal workings of victims, and what’s left intact is often further impaired by the medication required to treat the symptoms. Infertility seemed inevitable. It wasn’t at the top of our list of concerns back then. Just surviving beyond her teen years without having a lot of bags attached to her underwear was all that was on our minds. My wife and I grew closer. We had an active seven-year-old son, Daniel, who would also join in the family effort to survive this. It wasn’t easy and still isn’t. My son has his own story of dealing with a world that was running away from him.
The enormous pain Lisa dealt with receded by that first evening and early morning. The drugs did their job. The problem was that eating anything at all was going to aggravate the disease that seemed to be active in her small intestine. Any food passing through the system might set off the pain. What was happening at the time was unknowable, but the disease was causing a blockage that would flare up and then go out of control when food tried to pass where it couldn’t. If her intestine ruptured and burst, she could die fairly quickly. She didn’t eat for a day and then the inevitable. We were back to the ER.
The doctors sedated her and brought on the army of steroids. Within days, they had performed an operation to insert a semipermanent central line in her large jugular vein that would provide all the sustenance her little body would need for the next six weeks. She was provided 500 ml bottles of a white milky-looking substance that went directly into her IV and provided nourishment. Not a morsel would pass through her lips for forty-two days. They would provide a new bottle full of nourishment about every eight hours that would slowly enter through the central line IV. The bottles cost $500 each. We found that out one day when our Dano knocked over the tripod it hung from, sending it crashing to the floor.
My wife, Carol, and I adjusted our work schedules to always have one of us at the hospital to be with our daughter during the nonsleeping hours. We made arrangements for neighbors to help out with our son when possible. People help people. There were many days, mostly weekends, when our seven-year-old was a regular sixteen-hour visitor to the hospital along with us. He charmed all the nurses. But they were easy. I’m sure I wouldn’t be the first to compare nurses to angels.
Lisa was housed on the chronic care floor. Most all the other patients had cystic fibrosis. They were all kids. None of them would see adulthood. The courage we saw in those children day after day was something we all still remember. They faced their disease, their treatment, and their preemptive mortality with an attitude that made you realize the true nature of bravery. The nurses who treated them showed a different kind of courageous resilience I could never imagine.
We began to see Lisa’s illness in a much different light. Lisa felt lucky. Everything is relative. Small town living can be a wonderful thing. All the kids in her grade made a field trip to come and visit her in the hospital. Children in other grades did art projects to send get-well cards. It seemed as though the whole little town of Holliston, Massachusetts, cared about our Lisa.
We spent Christmas and New Year’s on the seventh floor of Children’s Hospital. The staff did everything possible to get every one of the patients that they could home for the holidays, even if they were to return in just a day or two. Home for Christmas was important. But there were still a few of us left on the floor during that time. There was no celebration. Those that were still there wouldn’t know the difference anyway. The next year, when Lisa was home, we all decided to go back to the seventh floor on Christmas Eve to count our blessings and to try to do what we could for the children there. We went shopping and picked out little presents for the patients too sick to leave and for all the nurses. We arrived before midnight and left the presents by their beds and at the nurse’s station. We vowed that we would come back every year at Christmas to remember how lucky we were and think of others. It was a nice thought that we didn’t fulfill. Life does go on, for better or worse. Maybe this year.
We would be back at the hospital many more times over the years. Lisa dealt with her disease and the inevitable surgeries and pain. Sometimes more painful than the disease were the effects the symptoms and treatment had on her life. The steroids blew her up like the Pillsbury Dough Boy. Dark facial hair came with the puffiness and is not exactly what a preteen and then teenager really wants to deal with. But it was either the Prednisone or the pain and more surgery. Kids are kids; and as the celebrity of being a patient wore off and she returned to school, the pudginess and facial hair drew their toll of taunts and snickers. It was a difficult adolescence.
It was interesting how people reacted to me when I was sick. I recall sitting in the front row of Miss Rocheford’s fifth grade language arts class. It hurt so much I couldn’t even sit up properly, and my face felt like it was always scrunched up in pain. She never even noticed. She only took note when I returned from my hospital stay blown up like a hairy Cabbage Patch Kid courtesy of all the steroids pumping through my ten-year old body.
I remember asking to go to the bathroom in Mr. Mazarro’s sixth grade science class. Before I could even get the words out, he was loudly telling me to go and not wait for the hall pass. That was a little embarrassing. I know he was just trying to be nice but all I had to do was pee...and my whole class ended up knowing about it.
I suppose it was better than Mr. Hardy’s seventh grade science class when I ran like hell to the bathroom to avoid an accident only to be publicly chastised for not taking the hall pass. That was beyond embarrassing. It was humiliating.
It wasn’t all bad though. I was a guest on the Good Day TV show to share my experiences as a kid living with Crohn’s and did a few interviews for clinical newsletters and fundraisers. That kind of stuff made me feel like I was able to do some good along with the bad hand I was dealt.
The kids in the cystic fibrosis ward stay with me in my heart. I’m pretty sure none of them are still around which is almost impossible to wrap my head around. You know, I was even jealous of them when we were in the hospital. They were allowed to order take-out Chinese food while I wasn’t allowed to eat anything. Perspective changes a lot doesn’t it?
I’ve blocked out a lot of those memories from my middle school years. Kids are mean at that age. Some adults weren’t much better, regardless of their intentions. I did my best to pretend everything was fine, which led to anxiety attacks and trips to a psychologist I didn’t want to talk to. Is it irony that I am now a professional social worker?
Once the anxiety attacks passed, I continued to try to live my life as an upbeat and smiley girl with a fast-developing sense of sarcasm and some emotional wall building. I still believe a cure will be discovered. I live my life. Is your life painless? Neither is mine.
Lisa into a very special person with an outrageous sense of humor and sarcastic wit. She became a very strong person with deep sensitivities. She recognized her own ongoing physical pain and dealt with it. She learned to recognize the pain of others and tried to help. She grew to be a mature adult, earned a Master’s in Social Work from Boston University and did her very best to help the children and families less fortunate than the rest of us. I don’t think she ever really learned to keep the “professional emotional distance” needed for long-term survival in that field. She just cared too much. But she tried.
As fate would have it, treatment for Crohn’s has progressed. In fact, it has progressed enough to give Lisa a chance to consider having a child, which she accomplished despite enormous flare-ups of the disease that made her new husband wonder what exactly he had gotten himself into. In order to get pregnant, Lisa had to go off almost all her medications. It was a decision she had to make. She decided she needed to at least try. Fertility needed a clean playing field to have a chance. It wasn’t going to be easy. Flare-ups and multiple surgeries followed the reduction in meds, but she soldiered on and tried to wait it out. She was able to conceive and suffered no flare ups during her pregnancy. After forty weeks of extreme discomfort, she gave birth to a healthy baby boy.
It’s been twenty-one years, and I’m still waiting for them to take the pain away. But you know what? There are a lot of people worse off than me. This isn’t going to kill me. It hasn’t stopped me from achieving my goals. I work in the field for which I’ve always had a passion; I have an incredible husband and the most perfect little boy. I have a pretty great dog too. These are the things that get me through the pain, now that my hands are too big for my daddy’s thumbs.
I am fortunate enough to have found an incredible partner in life who now lends his thumbs when the pain becomes too much. He had to consent for emergency surgery to be performed on me at 2 AM, six days after we got married. He waited alone all through the night. He even held my damaged intestine in his hand once the surgery was complete. Now that’s love! Or it’s a sick fascination with the small bowel. I choose the former. He’s waited patiently over the years through more surgeries and trial medications so we could become pregnant. My sweet little Jacob arrived five months ago. I recently noticed that he has been pooping a little more often than he had been. I’ve already made two calls to the pediatrician who has gently reassured me that this just sometimes happens with babies. She understands my “poop obsession.” He’s probably just teething.
And now she took a break from being a professional social worker to be a “professional” mom who is extremely anxious over any tummy aches that may pop up with her little son. Genetics seems to play an undetermined role in this disease. But so far, so good. Maybe this will be the year we all remember our promise to go back to Children’s Hospital for Christmas Eve. It’s better to be there because you choose to be.
And four years later, Lisa had a second son who she could actually breastfeed due to the rapid improvement of drug treatment that seems to be fighting a holding action against the disease. They still believe a cure is on the horizon. Lisa is back at her social work job and lives in Kuliouou Valley just west of Hawaii Kai. Not a bad place to be in.
So the good things always outweigh the bad. You just need to let go of the bad. Have I told you about my two incredible little boys I wasn’t sure I could have, my rock of a husband who weathers these storms with me and my sweet little dog?