Jon and I struggled to have our first child. Numerous indignities including a battery of tests and alternative treatments, and four miscarriages, eventually led us to schedule an information session on IVF. I learned I was pregnant the week before the appointment. Already accustomed to the disappointment of loss, Jon and I didn’t share our news with anyone for some time. About five months into the pregnancy we were on Nantucket during a particularly rainy week. We wandered into a yarn shop and Jon decided that he wanted to make a hat for our baby. Having never knitted before, but not wanting to be shown up by my husband I decided to make a hat myself. We picked out yarn and patterns and brought it back to the house where we were staying. While I was knitting my hat, I felt the baby move for the first time. In all my prior pregnancies I had never had that experience. I knew then that we were going to have this baby and that the baby would have at least one really nice hat made by his Dad.
My second child appeared out of thin air. My mother had recently been diagnosed with breast cancer and I was a busy mom of one year-old Sam, working full-time at a demanding job. After weeks of feeling nauseous, I began to suspect… that I had an ulcer from stress. I went to my now ex primary care physician (I had to break-up with him after the failure to diagnose pregnancy) who told me that if it didn’t get better soon, he wanted to do some tests. A few weeks later, I took a home pregnancy test. When it was positive, I was thrilled. We went for an ultrasound the next day. The technician started to laugh and asked me how far along I thought I was. I replied, “I don’t know 5 weeks?” She said, “try 16.5 weeks and a due date of New Year’s Eve for your little girl.” My father advised me to stop telling this story to everyone since this is not the kind of thing that happens to educated people. Nonetheless, I was overjoyed. It was going to be the shortest pregnancy on record. I left with an ultrasound of my daughter peacefully sucking her thumb. I was not afraid to fall completely in love with her at once.
When we were trudging through the maze of infertility and loss I never dared hope for two children. After Sam was born, I couldn’t imagine my life any other way. It was demanding, but the joy was indescribable. By the time we learned that we were expecting again, we felt like professional parents, unafraid of newborn babies, unafraid of the exhaustion and demands of the job. For us, parenting was proving to be pretty easy compared to the perils of pregnancy.
The news brought tremendous joy to our family and helped inspire my mother through her treatments. That autumn was filled with apple-picking, carousels, and all the best aspects of parenthood. We knew that soon our attention would be divided between Sam and our newborn baby. I was hyper-conscious of this magical time with him. He was funny and kind which is not always the case at that age. He was also very skinny.
I started to notice that he seemed excessively thirsty. I mentioned it to his pediatrician. I was now seven months pregnant, and scheduled for a routine glucose tolerance test the next day. She suggested I bring Sam to the lab to have one too. It was a Friday. I didn’t over think it and received my results the same day. I was fine. That Sunday we went apple picking and took the photo below.
On Monday morning, my husband called me at work to tell me that Sam had diabetes. He was 20 months old.
We were told to go home, pack for a week, and go to the emergency room. Which emergency room? Where? I was more shocked than upset. That would come later. I methodically went home where my father was babysitting for Sam and told him. He asked me if Sam would outgrow it. I just looked at him unable to conjure the word “no.”
Sam was sleeping. I started to pack some of his favorite pajamas, books, and toys even though I didn’t know where I was going. I suddenly remembered that I had “borrowed” a magazine from my OB-GYN’s office a few days before. It was an issue devoted to best specialty pediatricians in New York. I remembered reading that one of them was an endocrinologist. I frantically searched for the magazine, located it and called Dr. Barney Softness who was on the cover of the magazine. I told him that my 20-month old had just been diagnosed with diabetes. He told me to come to Columbia Presbyterian immediately and that he would meet us in the ER. Sam was still sleeping. He was so sick. His blood sugar was soaring. He was dehydrated and literally starving. I don’t know how I could not have seen it more clearly.
When we arrived, the nurses put Sam on an IV. He was terrified and took the entire course while lying on my pregnant belly for four hours. Neither of us moved. My mother, a diabetic herself since age 30 arrived in tears. I sent her away. I determined at that moment that this was not going to be a scene of tears and pity. I did not cry once. I knew that how we approached this on that first day would shape Sam’s perception of what was happening. My husband and I agreed within hours that we would never use the word “sick” to describe this to Sam.
In the morning we were moved to a room in the Children’s Hospital. Sam still had the IV in his arm and they required that he wear a tiny hospital gown. A legion of people began to come see us to teach us how to manage Sam’s care including lessons on what he should eat and how to check his blood glucose. We learned what could happen if we didn’t…I could not draw up an injection without bubbles in it. I became really angry at myself that I couldn’t do it. I became angry at my husband, who had experience giving injections, that he could do it. All the while, Sam was the light of the hospital wing, walking back and forth to the playroom, and bringing a smile to everyone he met.
After a few days they said we could go home. We refused. We weren’t ready. For sure, we couldn’t keep him safe. We stayed another two days. Every minute of these days is burned into my mind – cutting fruit, folding clothes, taking showers, watching Elmo in Grouchland repeatedly. The mishaps with the injections continued including one incident where Sam wiggled off my lap and Jon stuck me in the leg with the needle.
It began to sink in that time had a new meaning. We could never relax. It was always an hour since or an hour until some action on our part was necessary to keep Sam healthy and safe. The reality of counting every single gram of carbohydrate that went into our son’s mouth and that we would be required to test his glucose 8-10 times a day including in the middle of the night started to take shape. The idea that he could develop devastating complications if we didn’t manage his care well was overwhelming. All of our lives had completely changed overnight. Diabetes was never going away. This was a crisis without end.
The hospital held a Halloween party for all the kids, some of whom would have been happy to have diabetes. They gave out costumes. Sam was piglet – a character known for being small but virtuous and facing his fears. Someone took a Polaroid. This picture breaks my heart still.
The first night home was terrible. We called the doctor at 2:30 AM because Sam’s blood sugar was 250 and we didn’t know whether to give him an injection or not. The doctor was not as patient as I would have liked in informing me that this is not an emergency situation. To me, the entire situation was an emergency and I could not see how we were going to live under the constant strain.
The next morning we took Sam to the Metropolitan Museum of Art. I suppose we were trying to prove to ourselves that we could still live a normal life despite having to lug around all of Sam’s supplies. When it came time for lunch, we ate in the courtyard with the Tiffany windows. Sam loved the purple grapes. I wondered how many carbs were in a bunch that big. I drew up his injection and felt as though every person in the room was watching us. A few were, but most weren’t. Sam didn’t flinch and spoke for days of the experience. The inconvenience of the injections didn’t seem to bother him. Ever. This kid had a strength of character that far exceeded anyone’s expectations.
He learned to say the words insulin, injection, carbohydrate, and pharmacy well before his second birthday. Diabetes and all of its accoutrements became part of our life. The top of our china cabinet became diabetes central. We now had syringes, lancets, alcohol wipes, test strips, ketostix, juice boxes and glucagon in plain view. I couldn’t return to work because we weren’t comfortable leaving our babysitter with this new responsibility. I used the bulk of my paid maternity leave before our daughter was even born. Sam only weighed 27 lbs, and the insulin doses were so small that even the pediatric needles were too big to be accurate. The first marking on the needles was .5 and most of his doses were closer to .25 so we had to visually guess. There were multiple incidents of potential dosage mistakes as our amazing babysitter was learning. Then one day, while Jon was a few hundred feet underground touring the City’s third water tunnel (and thus unavailable) I ran out of syringes. Sam had just eaten a big breakfast. He needed his insulin. I ran to the corner pharmacy in a panic. How could I have let this happen? I was sure there was another box. He depended on me. The pharmacy didn’t have any. Either did either of the chain drugstores in the immediate vicinity. I was the worst parent ever. I sat down in the pharmacy and cried inconsolably all the tears for the prior two months.
On New Year’s Eve, Sam came down with a stomach flu and for some reason couldn’t take any insulin without plummeting his blood glucose. Under these conditions, I was terrified to leave Sam – even for a few hours – with my parents to have the baby. It would be the first time since his diagnosis that either Jon or I was not present. Shortly thereafter, I came down with it. I had passed my due date and was so dehydrated from the flu that they suggested I get an IV. Simultaneously, Sam’s doctors determined that he needed IV fluid too so Jon stayed with him in the ER in the same hospital. When I got down there, Sam was just hanging out with his IV singing songs. I was having minor contractions.
Our daughter Talia was born at six in the morning. Everything about her entry into the world was simple and straight forward. This was a considerate kid. She was lovely in every way. After the initial evening with my parents, during which they successfully caught and managed a middle of the night low blood sugar, Jon took Sam home. I was alone with her a lot and the secret fears that I had about having used up all our love on Sam dissolved.
Sam took to having a baby sister pretty well. Logistically, Jon and I had to divide and conquer. Jon did all the nighttime testing of Sam. The official reason for this was because Talia was nursing and I was tending to her. The real reason, unspoken between us, but known to both of us, was that I was (am) terrified to walk into his room at night and pick up his limp hand and wait the few seconds for the number to register.
As the months went on, the chaos of having two kids seemed to become mostly just that and not centered on diabetes. We started to meet other parents, research emerging technologies, and even to hope for a cure. We became advocates and fund-raisers. We put Sam on a wireless insulin pump called the OmniPod. It changed everything. I felt I could return to work and I did. Our babysitter (and Grandma and Grandpa on Mondays) calls me every few hours to tell me test results or confirm an insulin dose. I make no apologies about answering my phone no matter what I am doing. Most people understand, but some don’t and I try to ignore their disapproval.
When it was time to apply for preschool we could only look at schools that had a full-time nurse (a.k.a. private school). There were only two in our neighborhood. Thankfully Sam was admitted to one and we began to navigate the maze of school health. Jon or I had to go to school with him for a full month before the nurse was comfortable using the insulin pump and the orders met everyone’s legal concerns.
Sam’s class has a “meeting” each day and at one of these gatherings Sam showed all the kids his pump. His teachers informed us that he said, “This is my pump. It keeps me healthy and gives me insulin.” The kids checked it out and satisfied their curiosity and then they moved on. He keeps an inactive one in his work drawer at school “in case anyone wants to learn about it.” Sam is a natural teacher and has taught all of us to address each day head on. Two broken arms, a root canal, a shaving "incident" and dozens of skinned knees later we were surprised to learn that diabetes does not give us an exemption from all the other injuries little boys can encounter.
At every turn, this diagnosis presents extra challenges but we have come to see them simply as parenthood.
My second child appeared out of thin air. My mother had recently been diagnosed with breast cancer and I was a busy mom of one year-old Sam, working full-time at a demanding job. After weeks of feeling nauseous, I began to suspect… that I had an ulcer from stress. I went to my now ex primary care physician (I had to break-up with him after the failure to diagnose pregnancy) who told me that if it didn’t get better soon, he wanted to do some tests. A few weeks later, I took a home pregnancy test. When it was positive, I was thrilled. We went for an ultrasound the next day. The technician started to laugh and asked me how far along I thought I was. I replied, “I don’t know 5 weeks?” She said, “try 16.5 weeks and a due date of New Year’s Eve for your little girl.” My father advised me to stop telling this story to everyone since this is not the kind of thing that happens to educated people. Nonetheless, I was overjoyed. It was going to be the shortest pregnancy on record. I left with an ultrasound of my daughter peacefully sucking her thumb. I was not afraid to fall completely in love with her at once.
When we were trudging through the maze of infertility and loss I never dared hope for two children. After Sam was born, I couldn’t imagine my life any other way. It was demanding, but the joy was indescribable. By the time we learned that we were expecting again, we felt like professional parents, unafraid of newborn babies, unafraid of the exhaustion and demands of the job. For us, parenting was proving to be pretty easy compared to the perils of pregnancy.
The news brought tremendous joy to our family and helped inspire my mother through her treatments. That autumn was filled with apple-picking, carousels, and all the best aspects of parenthood. We knew that soon our attention would be divided between Sam and our newborn baby. I was hyper-conscious of this magical time with him. He was funny and kind which is not always the case at that age. He was also very skinny.
I started to notice that he seemed excessively thirsty. I mentioned it to his pediatrician. I was now seven months pregnant, and scheduled for a routine glucose tolerance test the next day. She suggested I bring Sam to the lab to have one too. It was a Friday. I didn’t over think it and received my results the same day. I was fine. That Sunday we went apple picking and took the photo below.
On Monday morning, my husband called me at work to tell me that Sam had diabetes. He was 20 months old.
We were told to go home, pack for a week, and go to the emergency room. Which emergency room? Where? I was more shocked than upset. That would come later. I methodically went home where my father was babysitting for Sam and told him. He asked me if Sam would outgrow it. I just looked at him unable to conjure the word “no.”
Sam was sleeping. I started to pack some of his favorite pajamas, books, and toys even though I didn’t know where I was going. I suddenly remembered that I had “borrowed” a magazine from my OB-GYN’s office a few days before. It was an issue devoted to best specialty pediatricians in New York. I remembered reading that one of them was an endocrinologist. I frantically searched for the magazine, located it and called Dr. Barney Softness who was on the cover of the magazine. I told him that my 20-month old had just been diagnosed with diabetes. He told me to come to Columbia Presbyterian immediately and that he would meet us in the ER. Sam was still sleeping. He was so sick. His blood sugar was soaring. He was dehydrated and literally starving. I don’t know how I could not have seen it more clearly.
When we arrived, the nurses put Sam on an IV. He was terrified and took the entire course while lying on my pregnant belly for four hours. Neither of us moved. My mother, a diabetic herself since age 30 arrived in tears. I sent her away. I determined at that moment that this was not going to be a scene of tears and pity. I did not cry once. I knew that how we approached this on that first day would shape Sam’s perception of what was happening. My husband and I agreed within hours that we would never use the word “sick” to describe this to Sam.
In the morning we were moved to a room in the Children’s Hospital. Sam still had the IV in his arm and they required that he wear a tiny hospital gown. A legion of people began to come see us to teach us how to manage Sam’s care including lessons on what he should eat and how to check his blood glucose. We learned what could happen if we didn’t…I could not draw up an injection without bubbles in it. I became really angry at myself that I couldn’t do it. I became angry at my husband, who had experience giving injections, that he could do it. All the while, Sam was the light of the hospital wing, walking back and forth to the playroom, and bringing a smile to everyone he met.
After a few days they said we could go home. We refused. We weren’t ready. For sure, we couldn’t keep him safe. We stayed another two days. Every minute of these days is burned into my mind – cutting fruit, folding clothes, taking showers, watching Elmo in Grouchland repeatedly. The mishaps with the injections continued including one incident where Sam wiggled off my lap and Jon stuck me in the leg with the needle.
It began to sink in that time had a new meaning. We could never relax. It was always an hour since or an hour until some action on our part was necessary to keep Sam healthy and safe. The reality of counting every single gram of carbohydrate that went into our son’s mouth and that we would be required to test his glucose 8-10 times a day including in the middle of the night started to take shape. The idea that he could develop devastating complications if we didn’t manage his care well was overwhelming. All of our lives had completely changed overnight. Diabetes was never going away. This was a crisis without end.
The hospital held a Halloween party for all the kids, some of whom would have been happy to have diabetes. They gave out costumes. Sam was piglet – a character known for being small but virtuous and facing his fears. Someone took a Polaroid. This picture breaks my heart still.
The first night home was terrible. We called the doctor at 2:30 AM because Sam’s blood sugar was 250 and we didn’t know whether to give him an injection or not. The doctor was not as patient as I would have liked in informing me that this is not an emergency situation. To me, the entire situation was an emergency and I could not see how we were going to live under the constant strain.
The next morning we took Sam to the Metropolitan Museum of Art. I suppose we were trying to prove to ourselves that we could still live a normal life despite having to lug around all of Sam’s supplies. When it came time for lunch, we ate in the courtyard with the Tiffany windows. Sam loved the purple grapes. I wondered how many carbs were in a bunch that big. I drew up his injection and felt as though every person in the room was watching us. A few were, but most weren’t. Sam didn’t flinch and spoke for days of the experience. The inconvenience of the injections didn’t seem to bother him. Ever. This kid had a strength of character that far exceeded anyone’s expectations.
He learned to say the words insulin, injection, carbohydrate, and pharmacy well before his second birthday. Diabetes and all of its accoutrements became part of our life. The top of our china cabinet became diabetes central. We now had syringes, lancets, alcohol wipes, test strips, ketostix, juice boxes and glucagon in plain view. I couldn’t return to work because we weren’t comfortable leaving our babysitter with this new responsibility. I used the bulk of my paid maternity leave before our daughter was even born. Sam only weighed 27 lbs, and the insulin doses were so small that even the pediatric needles were too big to be accurate. The first marking on the needles was .5 and most of his doses were closer to .25 so we had to visually guess. There were multiple incidents of potential dosage mistakes as our amazing babysitter was learning. Then one day, while Jon was a few hundred feet underground touring the City’s third water tunnel (and thus unavailable) I ran out of syringes. Sam had just eaten a big breakfast. He needed his insulin. I ran to the corner pharmacy in a panic. How could I have let this happen? I was sure there was another box. He depended on me. The pharmacy didn’t have any. Either did either of the chain drugstores in the immediate vicinity. I was the worst parent ever. I sat down in the pharmacy and cried inconsolably all the tears for the prior two months.
On New Year’s Eve, Sam came down with a stomach flu and for some reason couldn’t take any insulin without plummeting his blood glucose. Under these conditions, I was terrified to leave Sam – even for a few hours – with my parents to have the baby. It would be the first time since his diagnosis that either Jon or I was not present. Shortly thereafter, I came down with it. I had passed my due date and was so dehydrated from the flu that they suggested I get an IV. Simultaneously, Sam’s doctors determined that he needed IV fluid too so Jon stayed with him in the ER in the same hospital. When I got down there, Sam was just hanging out with his IV singing songs. I was having minor contractions.
Our daughter Talia was born at six in the morning. Everything about her entry into the world was simple and straight forward. This was a considerate kid. She was lovely in every way. After the initial evening with my parents, during which they successfully caught and managed a middle of the night low blood sugar, Jon took Sam home. I was alone with her a lot and the secret fears that I had about having used up all our love on Sam dissolved.
Sam took to having a baby sister pretty well. Logistically, Jon and I had to divide and conquer. Jon did all the nighttime testing of Sam. The official reason for this was because Talia was nursing and I was tending to her. The real reason, unspoken between us, but known to both of us, was that I was (am) terrified to walk into his room at night and pick up his limp hand and wait the few seconds for the number to register.
As the months went on, the chaos of having two kids seemed to become mostly just that and not centered on diabetes. We started to meet other parents, research emerging technologies, and even to hope for a cure. We became advocates and fund-raisers. We put Sam on a wireless insulin pump called the OmniPod. It changed everything. I felt I could return to work and I did. Our babysitter (and Grandma and Grandpa on Mondays) calls me every few hours to tell me test results or confirm an insulin dose. I make no apologies about answering my phone no matter what I am doing. Most people understand, but some don’t and I try to ignore their disapproval.
When it was time to apply for preschool we could only look at schools that had a full-time nurse (a.k.a. private school). There were only two in our neighborhood. Thankfully Sam was admitted to one and we began to navigate the maze of school health. Jon or I had to go to school with him for a full month before the nurse was comfortable using the insulin pump and the orders met everyone’s legal concerns.
Sam’s class has a “meeting” each day and at one of these gatherings Sam showed all the kids his pump. His teachers informed us that he said, “This is my pump. It keeps me healthy and gives me insulin.” The kids checked it out and satisfied their curiosity and then they moved on. He keeps an inactive one in his work drawer at school “in case anyone wants to learn about it.” Sam is a natural teacher and has taught all of us to address each day head on. Two broken arms, a root canal, a shaving "incident" and dozens of skinned knees later we were surprised to learn that diabetes does not give us an exemption from all the other injuries little boys can encounter.
At every turn, this diagnosis presents extra challenges but we have come to see them simply as parenthood.
