Bridget on her new Radio Flyer riding toy--she loves it!
Posts
All Feeling Better
12 years ago
Wednesday, April 30, 2008
Tuesday, April 29, 2008
Sharing the News (Our Story--Part III)
Making the phone calls from the hospital to share the news about Bridget’s birth and telling the other kids about their new baby sister were some of the toughest things I’ve ever had to do. Everyone was expecting the exciting details of her arrival, to hear about who she looked like, and all the other regular new baby stats. Telling people that Bridget had Down syndrome--and also needed surgery--was heartbreaking. I could hear the concern in the voices on the other end of the phone, and I tried to reassure everyone that we were going to be just fine.
I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.
Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.
The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.
It’s hard to think and write about now.
Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.
I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.
A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.
Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.
The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.
My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.
I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.
Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...
All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.
She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.
Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...
I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.
Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.
The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.
It’s hard to think and write about now.
Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.
I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.
A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.
Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.
The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.
My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.
I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.
Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...
All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.
She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.
Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...
Sharing the News (Our Story--Part III)
Making the phone calls from the hospital to share the news about Bridget’s birth and telling the other kids about their new baby sister were some of the toughest things I’ve ever had to do. Everyone was expecting the exciting details of her arrival, to hear about who she looked like, and all the other regular new baby stats. Telling people that Bridget had Down syndrome--and also needed surgery--was heartbreaking. I could hear the concern in the voices on the other end of the phone, and I tried to reassure everyone that we were going to be just fine.
I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.
Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.
The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.
It’s hard to think and write about now.
Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.
I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.
A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.
Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.
The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.
My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.
I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.
Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...
All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.
She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.
Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...
I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.
Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.
The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.
It’s hard to think and write about now.
Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.
I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.
A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.
Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.
The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.
My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.
I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.
Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...
All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.
She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.
Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...
Monday, April 28, 2008
Bridget’s Arrival & Diagnosis (Our Story--Part II)
I’d been sleeping on the family room couch since I was up most of the night anyway at that point in the pregnancy, and I think I had just fallen asleep when I felt my water break. It wasn’t the gush I’d experienced before—it was a tiny little pop—a whisper, not a roar. I knew that it was amniotic fluid, though, and that we would need to head to the hospital. It was early—I was only 34 weeks along—and Emmy (our 4th) was born just 10 minutes after we got to the hospital, so I woke Chris, called my OB and began getting my things together.
I got really nervous, and my heart was racing. By that point, there was little doubt in my mind that Bridget was not the typical baby we were expecting, although I kept a slim hope that my instincts were wrong. I was anxious, and we rushed to the hospital anticipating a quick delivery. By the time we got there, my blood pressure was high, and my amniotic fluid was low. I tried to make idle chit-chat, but I couldn’t re-direct my thoughts from trying to imagine how I would feel when I was finally able to meet Bridget. I had no idea what to expect, but I knew our lives were going to be forever changed that day. The room was quiet for the most part, and my labor was slow and steady. Bridget arrived over 12 hours after we got to the hospital, on what seemed like the longest day of my life.
We were there through two shift changes and two different on-call doctors with our OB/GYN practice. I had never met the doctor who delivered Bridget. She was straightforward and tactful in explaining what she saw in Bridget. We all noticed right away that there was an enlarged area by Bridget’s umbilical cord, and my heart sunk knowing that she would likely require surgery. Bridget was crying and moving and pink. Despite the strange-looking pouch on her stomach, Bridget looked great—and her apgars were both nines.
The OB gave us some basic information about Bridget’s umbilical area and said that she would need surgery to correct the “omphalocele”--the term for when an organ is inside a pouch outside the abdomen (in her case, it was a small section of the small intestine). She felt that Bridget’s omphalocele was relatively small, and that her surgery would not be as involved as others she had seen. She also said that sometimes omphalocele occurs with other genetic conditions.
As she handed Bridget to me, I remeber the OB saying, “We think your baby displays other characteristics typical of a baby with Down syndrome.” I was looking at Bridget noticing the shape of her little eyes. My own eyes filled with tears, and I was nodding my head in agreement, smiling slightly at Chris.
“I told you,” I said.
"I know,” he replied quietly. “Can you handle this?"
"Yes," I said, "Can you?"
"Yes," he answered as quickly. We both knew there was no looking back, and we would need to figure out how to tell the kids and extended family.
Chris was holding Bridget. He whispered to her, "We've got you, sweetie.” Our nurse overheard him and started crying. She took my hand, said congratulations, and that Bridget was sure to bring us great joy. She said she would send in a neonatologist to discuss Bridget’s diagnosis and to answer any questions we might have.
The neonatologist was kind and thorough. He explained as much as he could about her omphalocele, and what surgery would entail to correct it. He made very few predictions about Bridget’s health and prognosis. He explained the traits commonly associated with a diagnosis of Down syndrome and which of those things he had seen in Bridget. He said that her diagnosis would be confirmed through blood tests. I’ve heard horror stories about some of the things doctors have said to parents with a new Ds diagnosis, and I’m thankful we did not have that experience. This particular doctor took his time, and listened as much as he talked. As he left the room, he said that he sensed our acceptance of the circumstances, and that he thought we would be just fine…
I got really nervous, and my heart was racing. By that point, there was little doubt in my mind that Bridget was not the typical baby we were expecting, although I kept a slim hope that my instincts were wrong. I was anxious, and we rushed to the hospital anticipating a quick delivery. By the time we got there, my blood pressure was high, and my amniotic fluid was low. I tried to make idle chit-chat, but I couldn’t re-direct my thoughts from trying to imagine how I would feel when I was finally able to meet Bridget. I had no idea what to expect, but I knew our lives were going to be forever changed that day. The room was quiet for the most part, and my labor was slow and steady. Bridget arrived over 12 hours after we got to the hospital, on what seemed like the longest day of my life.
We were there through two shift changes and two different on-call doctors with our OB/GYN practice. I had never met the doctor who delivered Bridget. She was straightforward and tactful in explaining what she saw in Bridget. We all noticed right away that there was an enlarged area by Bridget’s umbilical cord, and my heart sunk knowing that she would likely require surgery. Bridget was crying and moving and pink. Despite the strange-looking pouch on her stomach, Bridget looked great—and her apgars were both nines.
The OB gave us some basic information about Bridget’s umbilical area and said that she would need surgery to correct the “omphalocele”--the term for when an organ is inside a pouch outside the abdomen (in her case, it was a small section of the small intestine). She felt that Bridget’s omphalocele was relatively small, and that her surgery would not be as involved as others she had seen. She also said that sometimes omphalocele occurs with other genetic conditions.
As she handed Bridget to me, I remeber the OB saying, “We think your baby displays other characteristics typical of a baby with Down syndrome.” I was looking at Bridget noticing the shape of her little eyes. My own eyes filled with tears, and I was nodding my head in agreement, smiling slightly at Chris.
“I told you,” I said.
"I know,” he replied quietly. “Can you handle this?"
"Yes," I said, "Can you?"
"Yes," he answered as quickly. We both knew there was no looking back, and we would need to figure out how to tell the kids and extended family.
Chris was holding Bridget. He whispered to her, "We've got you, sweetie.” Our nurse overheard him and started crying. She took my hand, said congratulations, and that Bridget was sure to bring us great joy. She said she would send in a neonatologist to discuss Bridget’s diagnosis and to answer any questions we might have.
The neonatologist was kind and thorough. He explained as much as he could about her omphalocele, and what surgery would entail to correct it. He made very few predictions about Bridget’s health and prognosis. He explained the traits commonly associated with a diagnosis of Down syndrome and which of those things he had seen in Bridget. He said that her diagnosis would be confirmed through blood tests. I’ve heard horror stories about some of the things doctors have said to parents with a new Ds diagnosis, and I’m thankful we did not have that experience. This particular doctor took his time, and listened as much as he talked. As he left the room, he said that he sensed our acceptance of the circumstances, and that he thought we would be just fine…
Bridget’s Arrival & Diagnosis (Our Story--Part II)
I’d been sleeping on the family room couch since I was up most of the night anyway at that point in the pregnancy, and I think I had just fallen asleep when I felt my water break. It wasn’t the gush I’d experienced before—it was a tiny little pop—a whisper, not a roar. I knew that it was amniotic fluid, though, and that we would need to head to the hospital. It was early—I was only 34 weeks along—and Emmy (our 4th) was born just 10 minutes after we got to the hospital, so I woke Chris, called my OB and began getting my things together.
I got really nervous, and my heart was racing. By that point, there was little doubt in my mind that Bridget was not the typical baby we were expecting, although I kept a slim hope that my instincts were wrong. I was anxious, and we rushed to the hospital anticipating a quick delivery. By the time we got there, my blood pressure was high, and my amniotic fluid was low. I tried to make idle chit-chat, but I couldn’t re-direct my thoughts from trying to imagine how I would feel when I was finally able to meet Bridget. I had no idea what to expect, but I knew our lives were going to be forever changed that day. The room was quiet for the most part, and my labor was slow and steady. Bridget arrived over 12 hours after we got to the hospital, on what seemed like the longest day of my life.
We were there through two shift changes and two different on-call doctors with our OB/GYN practice. I had never met the doctor who delivered Bridget. She was straightforward and tactful in explaining what she saw in Bridget. We all noticed right away that there was an enlarged area by Bridget’s umbilical cord, and my heart sunk knowing that she would likely require surgery. Bridget was crying and moving and pink. Despite the strange-looking pouch on her stomach, Bridget looked great—and her apgars were both nines.
The OB gave us some basic information about Bridget’s umbilical area and said that she would need surgery to correct the “omphalocele”--the term for when an organ is inside a pouch outside the abdomen (in her case, it was a small section of the small intestine). She felt that Bridget’s omphalocele was relatively small, and that her surgery would not be as involved as others she had seen. She also said that sometimes omphalocele occurs with other genetic conditions.
As she handed Bridget to me, I remeber the OB saying, “We think your baby displays other characteristics typical of a baby with Down syndrome.” I was looking at Bridget noticing the shape of her little eyes. My own eyes filled with tears, and I was nodding my head in agreement, smiling slightly at Chris.
“I told you,” I said.
"I know,” he replied quietly. “Can you handle this?"
"Yes," I said, "Can you?"
"Yes," he answered as quickly. We both knew there was no looking back, and we would need to figure out how to tell the kids and extended family.
Chris was holding Bridget. He whispered to her, "We've got you, sweetie.” Our nurse overheard him and started crying. She took my hand, said congratulations, and that Bridget was sure to bring us great joy. She said she would send in a neonatologist to discuss Bridget’s diagnosis and to answer any questions we might have.
The neonatologist was kind and thorough. He explained as much as he could about her omphalocele, and what surgery would entail to correct it. He made very few predictions about Bridget’s health and prognosis. He explained the traits commonly associated with a diagnosis of Down syndrome and which of those things he had seen in Bridget. He said that her diagnosis would be confirmed through blood tests. I’ve heard horror stories about some of the things doctors have said to parents with a new Ds diagnosis, and I’m thankful we did not have that experience. This particular doctor took his time, and listened as much as he talked. As he left the room, he said that he sensed our acceptance of the circumstances, and that he thought we would be just fine…
I got really nervous, and my heart was racing. By that point, there was little doubt in my mind that Bridget was not the typical baby we were expecting, although I kept a slim hope that my instincts were wrong. I was anxious, and we rushed to the hospital anticipating a quick delivery. By the time we got there, my blood pressure was high, and my amniotic fluid was low. I tried to make idle chit-chat, but I couldn’t re-direct my thoughts from trying to imagine how I would feel when I was finally able to meet Bridget. I had no idea what to expect, but I knew our lives were going to be forever changed that day. The room was quiet for the most part, and my labor was slow and steady. Bridget arrived over 12 hours after we got to the hospital, on what seemed like the longest day of my life.
We were there through two shift changes and two different on-call doctors with our OB/GYN practice. I had never met the doctor who delivered Bridget. She was straightforward and tactful in explaining what she saw in Bridget. We all noticed right away that there was an enlarged area by Bridget’s umbilical cord, and my heart sunk knowing that she would likely require surgery. Bridget was crying and moving and pink. Despite the strange-looking pouch on her stomach, Bridget looked great—and her apgars were both nines.
The OB gave us some basic information about Bridget’s umbilical area and said that she would need surgery to correct the “omphalocele”--the term for when an organ is inside a pouch outside the abdomen (in her case, it was a small section of the small intestine). She felt that Bridget’s omphalocele was relatively small, and that her surgery would not be as involved as others she had seen. She also said that sometimes omphalocele occurs with other genetic conditions.
As she handed Bridget to me, I remeber the OB saying, “We think your baby displays other characteristics typical of a baby with Down syndrome.” I was looking at Bridget noticing the shape of her little eyes. My own eyes filled with tears, and I was nodding my head in agreement, smiling slightly at Chris.
“I told you,” I said.
"I know,” he replied quietly. “Can you handle this?"
"Yes," I said, "Can you?"
"Yes," he answered as quickly. We both knew there was no looking back, and we would need to figure out how to tell the kids and extended family.
Chris was holding Bridget. He whispered to her, "We've got you, sweetie.” Our nurse overheard him and started crying. She took my hand, said congratulations, and that Bridget was sure to bring us great joy. She said she would send in a neonatologist to discuss Bridget’s diagnosis and to answer any questions we might have.
The neonatologist was kind and thorough. He explained as much as he could about her omphalocele, and what surgery would entail to correct it. He made very few predictions about Bridget’s health and prognosis. He explained the traits commonly associated with a diagnosis of Down syndrome and which of those things he had seen in Bridget. He said that her diagnosis would be confirmed through blood tests. I’ve heard horror stories about some of the things doctors have said to parents with a new Ds diagnosis, and I’m thankful we did not have that experience. This particular doctor took his time, and listened as much as he talked. As he left the room, he said that he sensed our acceptance of the circumstances, and that he thought we would be just fine…
Sunday, April 27, 2008
Expecting (Our Story--Part I)
I found out I was pregnant with Bridget on Christmas Eve, 2005. I had a sense from the very beginning that something was different this time.
I honestly didn’t think we would have more children after my own health crisis the year before. When I found out we were expecting another baby, I sensed there was a reason that this child was meant for us.
For the first time (other than my mom’s reaction when we found out we were expecting Sara), people cried—some even sobbed—when we shared our news. Our friends and families were glad to see that we had moved past the frightening moments of 2004 and were moving toward happier times.
The pregnancy progressed typically. As usual, I was sick for the first 4 1/2 months, and Bridget kept me up at night with lots of activity. I craved mayonnaise, of all things, and gained plenty of weight :). All signs indicated that I was carrying another healthy baby.
In the months leading up to Bridget’s birth, I kept having this overwhelming feeling that she had Down syndrome. Nothing was that different from any of my other pregnancies, and Bridget was very active and strong. We declined prenatal testing (other than routine ultrasounds), so we didn't officially know...but I knew. I can’t explain it really, but I almost felt like I was being tapped on the shoulder and asked to notice things.
One day, I was standing in line at the grocery store (by myself, which is unusual since there are usually at least two kids with me). The woman in front of me had three adorable young boys, all close in age. I could tell that the little one in the front of her shopping cart had Down syndrome, which is interesting because I had never really seen--or noticed--a baby or toddler with Ds before. I couldn’t take my eyes off that little boy, or the way he was interacting with his mom and brothers. He was precious, and they were just a normal family. I had a sense that I was getting a peek into our future with Bridget.
I thought often about how our lives might be different when she arrived. I knew that adding another child would be an adjustment in itself for all of us. I wasn’t sure, though, what it would mean if our new baby did indeed have Down syndrome.
I spent hours combing DS message boards. I read some things that comforted me and highlighted the joy that all children bring to our lives. Some parents seemed to have taken the diagnosis in stride, and others were clearly fighting it. Parents described emotions and feelings on all ends of the spectrum—from elation to despair—over their child’s health, progress and place in the world. I understood that all of these feelings were normal, while I struggled to make sense of my own.
I had fallen asleep in the middle of the afternoon one day, about a week before Bridget was born. I’d guess I only slept for about 20 minutes, but I had a very realistic dream that my water broke early and that my baby was born with Ds. In the dream I did not see her…she was quickly whisked away and someone at the hospital relayed the details.
When I woke, I sat still for quite some time, breathing deeply and trying to process the information. I felt Bridget moving vigorously inside me and could see my stomach moving from side to side. At that moment, I knew that the dream was meant to prepare me for her arrival...
I honestly didn’t think we would have more children after my own health crisis the year before. When I found out we were expecting another baby, I sensed there was a reason that this child was meant for us.
For the first time (other than my mom’s reaction when we found out we were expecting Sara), people cried—some even sobbed—when we shared our news. Our friends and families were glad to see that we had moved past the frightening moments of 2004 and were moving toward happier times.
The pregnancy progressed typically. As usual, I was sick for the first 4 1/2 months, and Bridget kept me up at night with lots of activity. I craved mayonnaise, of all things, and gained plenty of weight :). All signs indicated that I was carrying another healthy baby.
In the months leading up to Bridget’s birth, I kept having this overwhelming feeling that she had Down syndrome. Nothing was that different from any of my other pregnancies, and Bridget was very active and strong. We declined prenatal testing (other than routine ultrasounds), so we didn't officially know...but I knew. I can’t explain it really, but I almost felt like I was being tapped on the shoulder and asked to notice things.
One day, I was standing in line at the grocery store (by myself, which is unusual since there are usually at least two kids with me). The woman in front of me had three adorable young boys, all close in age. I could tell that the little one in the front of her shopping cart had Down syndrome, which is interesting because I had never really seen--or noticed--a baby or toddler with Ds before. I couldn’t take my eyes off that little boy, or the way he was interacting with his mom and brothers. He was precious, and they were just a normal family. I had a sense that I was getting a peek into our future with Bridget.
I thought often about how our lives might be different when she arrived. I knew that adding another child would be an adjustment in itself for all of us. I wasn’t sure, though, what it would mean if our new baby did indeed have Down syndrome.
I spent hours combing DS message boards. I read some things that comforted me and highlighted the joy that all children bring to our lives. Some parents seemed to have taken the diagnosis in stride, and others were clearly fighting it. Parents described emotions and feelings on all ends of the spectrum—from elation to despair—over their child’s health, progress and place in the world. I understood that all of these feelings were normal, while I struggled to make sense of my own.
I had fallen asleep in the middle of the afternoon one day, about a week before Bridget was born. I’d guess I only slept for about 20 minutes, but I had a very realistic dream that my water broke early and that my baby was born with Ds. In the dream I did not see her…she was quickly whisked away and someone at the hospital relayed the details.
When I woke, I sat still for quite some time, breathing deeply and trying to process the information. I felt Bridget moving vigorously inside me and could see my stomach moving from side to side. At that moment, I knew that the dream was meant to prepare me for her arrival...
Expecting (Our Story--Part I)
I found out I was pregnant with Bridget on Christmas Eve, 2005. I had a sense from the very beginning that something was different this time.
I honestly didn’t think we would have more children after my own health crisis the year before. When I found out we were expecting another baby, I sensed there was a reason that this child was meant for us.
For the first time (other than my mom’s reaction when we found out we were expecting Sara), people cried—some even sobbed—when we shared our news. Our friends and families were glad to see that we had moved past the frightening moments of 2004 and were moving toward happier times.
The pregnancy progressed typically. As usual, I was sick for the first 4 1/2 months, and Bridget kept me up at night with lots of activity. I craved mayonnaise, of all things, and gained plenty of weight :). All signs indicated that I was carrying another healthy baby.
In the months leading up to Bridget’s birth, I kept having this overwhelming feeling that she had Down syndrome. Nothing was that different from any of my other pregnancies, and Bridget was very active and strong. We declined prenatal testing (other than routine ultrasounds), so we didn't officially know...but I knew. I can’t explain it really, but I almost felt like I was being tapped on the shoulder and asked to notice things.
One day, I was standing in line at the grocery store (by myself, which is unusual since there are usually at least two kids with me). The woman in front of me had three adorable young boys, all close in age. I could tell that the little one in the front of her shopping cart had Down syndrome, which is interesting because I had never really seen--or noticed--a baby or toddler with Ds before. I couldn’t take my eyes off that little boy, or the way he was interacting with his mom and brothers. He was precious, and they were just a normal family. I had a sense that I was getting a peek into our future with Bridget.
I thought often about how our lives might be different when she arrived. I knew that adding another child would be an adjustment in itself for all of us. I wasn’t sure, though, what it would mean if our new baby did indeed have Down syndrome.
I spent hours combing DS message boards. I read some things that comforted me and highlighted the joy that all children bring to our lives. Some parents seemed to have taken the diagnosis in stride, and others were clearly fighting it. Parents described emotions and feelings on all ends of the spectrum—from elation to despair—over their child’s health, progress and place in the world. I understood that all of these feelings were normal, while I struggled to make sense of my own.
I had fallen asleep in the middle of the afternoon one day, about a week before Bridget was born. I’d guess I only slept for about 20 minutes, but I had a very realistic dream that my water broke early and that my baby was born with Ds. In the dream I did not see her…she was quickly whisked away and someone at the hospital relayed the details.
When I woke, I sat still for quite some time, breathing deeply and trying to process the information. I felt Bridget moving vigorously inside me and could see my stomach moving from side to side. At that moment, I knew that the dream was meant to prepare me for her arrival...
I honestly didn’t think we would have more children after my own health crisis the year before. When I found out we were expecting another baby, I sensed there was a reason that this child was meant for us.
For the first time (other than my mom’s reaction when we found out we were expecting Sara), people cried—some even sobbed—when we shared our news. Our friends and families were glad to see that we had moved past the frightening moments of 2004 and were moving toward happier times.
The pregnancy progressed typically. As usual, I was sick for the first 4 1/2 months, and Bridget kept me up at night with lots of activity. I craved mayonnaise, of all things, and gained plenty of weight :). All signs indicated that I was carrying another healthy baby.
In the months leading up to Bridget’s birth, I kept having this overwhelming feeling that she had Down syndrome. Nothing was that different from any of my other pregnancies, and Bridget was very active and strong. We declined prenatal testing (other than routine ultrasounds), so we didn't officially know...but I knew. I can’t explain it really, but I almost felt like I was being tapped on the shoulder and asked to notice things.
One day, I was standing in line at the grocery store (by myself, which is unusual since there are usually at least two kids with me). The woman in front of me had three adorable young boys, all close in age. I could tell that the little one in the front of her shopping cart had Down syndrome, which is interesting because I had never really seen--or noticed--a baby or toddler with Ds before. I couldn’t take my eyes off that little boy, or the way he was interacting with his mom and brothers. He was precious, and they were just a normal family. I had a sense that I was getting a peek into our future with Bridget.
I thought often about how our lives might be different when she arrived. I knew that adding another child would be an adjustment in itself for all of us. I wasn’t sure, though, what it would mean if our new baby did indeed have Down syndrome.
I spent hours combing DS message boards. I read some things that comforted me and highlighted the joy that all children bring to our lives. Some parents seemed to have taken the diagnosis in stride, and others were clearly fighting it. Parents described emotions and feelings on all ends of the spectrum—from elation to despair—over their child’s health, progress and place in the world. I understood that all of these feelings were normal, while I struggled to make sense of my own.
I had fallen asleep in the middle of the afternoon one day, about a week before Bridget was born. I’d guess I only slept for about 20 minutes, but I had a very realistic dream that my water broke early and that my baby was born with Ds. In the dream I did not see her…she was quickly whisked away and someone at the hospital relayed the details.
When I woke, I sat still for quite some time, breathing deeply and trying to process the information. I felt Bridget moving vigorously inside me and could see my stomach moving from side to side. At that moment, I knew that the dream was meant to prepare me for her arrival...
Friday, April 25, 2008
Introduction & Welcome
~ Welcome to Bridget's Light ~
If you've found us, you most likely know or love someone with Down syndrome. You might want to know more about life with Ds if you are pregnant and have a prenatal diagnosis (or are just suspecting). You may even be researching the diagnosis for a class. Whatever has brought you here--we're glad you stopped by.
We welcome readers into our lives with the hope of furthering understanding of Down syndrome, and helping others see how much Bridget has to offer, and all she brings to our lives.
A Ds diagnosis is far from the end of the world. We didn't anticipate having a child with Down syndrome, but have discovered that a path uncharted often offers unexpected rewards. We are a happy family, living a happy life which happens to include Down syndrome. Our lives would not be the same without Bridget.
We welcome readers into our lives with the hope of furthering understanding of Down syndrome, and helping others see how much Bridget has to offer, and all she brings to our lives.
A Ds diagnosis is far from the end of the world. We didn't anticipate having a child with Down syndrome, but have discovered that a path uncharted often offers unexpected rewards. We are a happy family, living a happy life which happens to include Down syndrome. Our lives would not be the same without Bridget.
***
With that in mind...this page is meant to celebrate Bridget and Alina, and to share some of what we are learning from them. I will post pictures and thoughts on all aspects of Life with our girls. When possible, I'll post writing from other members of our family.
Since I'll be doing most of the writing, it might be helpful to know a little bit about my perspective:
While recent years have brought some serious challenges (including my brain tumor diagnosis and treatment in 2004), I am probably as happy and content with Life as I’ve ever been. Each journey--each relationship, each experience--adds grit, substance and understanding. I am thankful for all of it.
I believe that people are inherently good, and that there is a plan for each of us. There are no coincidences. The people and events in our lives are there because they are meant to be there.
I believe the universe is inherently friendly; that good things happen even in the worst of times; and that we make conscious choices to be hopeful, and to let love lead.
I have tremendous faith that, in the end, love always prevails.
Our family has been so deeply impacted by knowing and loving our two little girls--in a really good way. Now, it's my job to spread the goodness :)...
Introduction & Welcome
~ Welcome to Bridget's Light ~
With that in mind...this page is meant to celebrate Bridget, and to share some of what we are learning from her. I will post pictures and thoughts on all aspects of Life with Bridget. When possible, I'll post writing from other members of our family. Since I will be doing most of the writing, here's some background on what's shaped my perspective...If you've found us, you most likely know or love someone with Down syndrome. You might want to know more about life with Ds if you are pregnant and have a prenatal diagnosis (or are just suspecting). You may even be researching the diagnosis for a class. Whatever has brought you here--we're glad you stopped by.
We welcome readers into our lives with the hope of furthering understanding of Down syndrome, and helping others see how much Bridget has to offer, and all she brings to our lives.
A Ds diagnosis is far from the end of the world. We didn't anticipate having a child with Down syndrome, but have discovered that a path uncharted often offers unexpected rewards. We are a happy family, living a happy life which happens to include Down syndrome. Our lives would not be the same without Bridget.
We welcome readers into our lives with the hope of furthering understanding of Down syndrome, and helping others see how much Bridget has to offer, and all she brings to our lives.
A Ds diagnosis is far from the end of the world. We didn't anticipate having a child with Down syndrome, but have discovered that a path uncharted often offers unexpected rewards. We are a happy family, living a happy life which happens to include Down syndrome. Our lives would not be the same without Bridget.
I used to think being lucky meant always having good things happen. And, until early adulthood, my life fit that definition--it was free, for the most part, from death, divorce and tragedy. I was healthy and the people I loved were healthy. My support system was strong and in tact. I grew up happy, and loved, and confident. I met Chris the day I began college and we married four years later.
Things began to swing just before our wedding, as we watched Chris' father die from malignant melanoma at age 53. Our first child, Sara, was born prematurely (in 1995, when I was 25), had multiple malformations of her digestive tract, and underwent three major surgical procedures in her first 10 months of life. In 2004, at age 34, I was diagnosed with a large, life-threatening brain tumor. And then, in 2006, Bridget, our fifth child, was born prematurely, required surgery and was diagnosed with Down syndrome at birth.
●Chances of having a child with VATER Association (Sara): around 1 in 10,000.
●Chances of having an Acoustic Neuroma (me): 1 in 100,000.
●Chances of having a child with Down syndrome (Bridget)--even at my “advanced maternal age” of 36 at the time: about 1 or 2 in 100 (around 2%).
●Chances of having three, rare, non-hereditary and unrelated medical diagnoses in one family: very, very slim.
When Bridget was born early and with Down syndrome I joked, “I’m not playing the odds anymore!” But, I never felt like a victim. I know these things happen, and I know others have managed through much, much worse.
I love my life, and I wouldn’t change a thing—not even the difficult things. We all need chances to feel, to consider, to reflect, to prioritize and to act. Our biggest struggles sometimes provide us just this.
When I really started thinking about the odds, I realized that we are some of the luckiest unlucky people…
●Sara is now thirteen and thriving. We made it through a tough first year with her, and have not looked back.
●Even though my own situation once looked bleak, I survived and am thriving.
●Bridget is strong, healthy and able. She is the light of our lives and has taught us all so much. I can’t imagine Life without her.
My definition of luck has changed. Now, I know that if you think you're lucky, you are.
I still think I'm lucky. I am lucky to have had all these experiences, although some were not necessarily easy. I know that the good and the bad times are part of the journey. While recent years have brought some serious challenges, I am probably as happy and content with Life as I’ve ever been. Each journey--each relationship, each experience--adds grit, substance and understanding…and I am thankful for all of it, the good and the bad.
I believe that people are inherently good. I see it everywhere, in faces, in big and small gestures, and in people giving of themselves (personal support or corporate commitments).
I believe the universe is inherently friendly; that good things happen even in the worst of times; and that we make conscious choices to be hopeful, and to let love lead.
I have tremendous faith that, in the end, love always prevails.
Our family has been so deeply impacted by Bridget and the events of the past few years--in a really good way. Now, it's my job to spread the goodness :)...
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