My husband came home last night and said a coworker's wife had their first baby, a healthy, 7-lb girl. His boss sent the new parents flowers from the company, which is such a nice gesture. When you celebrate a joyous occasion, don't you want to know you have support from every corner of your life? But, my husband's question to me was, "Why didn't the company do that for us?" And we both know the answer. When you have a preemie, people don't send flowers and cards and balloons and presents. They feel sorry for you. I had to cancel my baby shower because it was the week after J was born. I didn't even bother to plan a baby shower with M, and it's a good thing. We would have missed it too. You don't leave the hospital with a cart full of gifts from well-wishers. I saw those people, and they didn't have preemies.
I want to be clear that it's not about the actual gifts; it's about the gesture.
My husband's comment about having preemies made us both a little sad. "There's no celebration." Why isn't there a celebration? They are still babies, we were still new parents, and bringing them home was still a joyous occasion--it's just that it took us longer to bring our babies home.
Babies are special. Preemies are just extra-special babies, and they deserve a celebration too.
Monday, August 19, 2013
Friday, August 16, 2013
The Coming Changes
J's state-funded intervention has been phenomenal and aggressive. Physical therapy twice a week for a year and once a week for an additional 18 months. Speech therapy twice a week for a year. Placement in a school that specializes in developmental delays for nearly two years. His intervention has been impressive. In fact, I'd put it up against any other state. I really don't think J could have had more help in catching up with his peers.
Studies show that the earlier a child can get intervention, the better the child will do longterm. But, here's the problem: All this intervention doesn't come cheap. Insurance companies and state governments pay a pretty penny for it. I am conscious of the fact that J's therapy came at a great cost when there isn't much extra money lying around in state budgets.
I have just learned that M's experience may be totally different from J's. She's already receiving physical therapy, so hopefully she's guaranteed that service until she begins to catch up with her peers. She's seven months old, and she doesn't roll over from back to front, much less sit up or crawl. She needs help that I am unable to give her. But, the state is encouraging a less expensive approach: send a teacher into the home to talk to the parent. My response: about what? I have had this service with both J and M, and I can vouch for its limitations. Someone can look at her and give me suggestions, but what about when she's on the verge of walking and clings to every piece of furniture in the room for months without letting go, like J did? Or what about when she struggles to say any words at all at age two, not even calling me "Mama," just like J did? She was less premature, she's a girl, and she seems like a natural extrovert, so maybe she won't need all the services J had. But, I can promise you, I am no substitute for trained teachers and therapists, no matter how much you talk to me. I can try, but I am her mother, not her coach. And J needed lots of coaches.
It doesn't matter? One day all kids will catch up? Not necessarily. And at what cost? My friend with quads has all of her kids in a public preschool. They didn't get the therapy J got because the philosophy in her state is different; less therapy up front in the hopes most kids won't need services later. Wrong! Now, the state is paying teachers full-time to teach her children. J didn't qualify for state preschool, but he would have qualified had he not had all of the intervention. Of that I am sure.
There is the argument that when we were kids, such services didn't exist, and we turned out just fine. My response: there are more preemies now who survive. J wouldn't have lived a few decades ago, so how can we even make that comparison? And delays are being diagnosed earlier. Does that mean we should ignore diagnoses until children are school-aged? And I'm not just talking about my preemies. I'm talking about kids with autism, Down's syndrome, and cerebral palsy. I believe in being proactive, because I see the happy, healthy child that J is. Without all the enrichment he's received from his skilled team, what would he be?
My philosophy is you can pay now, or you can pay later. I'd rather, as a society, that we put the effort into our tiny babies. We don't have the money for that? Then, our priorities are all wrong.
Studies show that the earlier a child can get intervention, the better the child will do longterm. But, here's the problem: All this intervention doesn't come cheap. Insurance companies and state governments pay a pretty penny for it. I am conscious of the fact that J's therapy came at a great cost when there isn't much extra money lying around in state budgets.
I have just learned that M's experience may be totally different from J's. She's already receiving physical therapy, so hopefully she's guaranteed that service until she begins to catch up with her peers. She's seven months old, and she doesn't roll over from back to front, much less sit up or crawl. She needs help that I am unable to give her. But, the state is encouraging a less expensive approach: send a teacher into the home to talk to the parent. My response: about what? I have had this service with both J and M, and I can vouch for its limitations. Someone can look at her and give me suggestions, but what about when she's on the verge of walking and clings to every piece of furniture in the room for months without letting go, like J did? Or what about when she struggles to say any words at all at age two, not even calling me "Mama," just like J did? She was less premature, she's a girl, and she seems like a natural extrovert, so maybe she won't need all the services J had. But, I can promise you, I am no substitute for trained teachers and therapists, no matter how much you talk to me. I can try, but I am her mother, not her coach. And J needed lots of coaches.
It doesn't matter? One day all kids will catch up? Not necessarily. And at what cost? My friend with quads has all of her kids in a public preschool. They didn't get the therapy J got because the philosophy in her state is different; less therapy up front in the hopes most kids won't need services later. Wrong! Now, the state is paying teachers full-time to teach her children. J didn't qualify for state preschool, but he would have qualified had he not had all of the intervention. Of that I am sure.
There is the argument that when we were kids, such services didn't exist, and we turned out just fine. My response: there are more preemies now who survive. J wouldn't have lived a few decades ago, so how can we even make that comparison? And delays are being diagnosed earlier. Does that mean we should ignore diagnoses until children are school-aged? And I'm not just talking about my preemies. I'm talking about kids with autism, Down's syndrome, and cerebral palsy. I believe in being proactive, because I see the happy, healthy child that J is. Without all the enrichment he's received from his skilled team, what would he be?
My philosophy is you can pay now, or you can pay later. I'd rather, as a society, that we put the effort into our tiny babies. We don't have the money for that? Then, our priorities are all wrong.
Thursday, August 15, 2013
Just Summer
I have been on a journey. I went away tired and ready for a vacation, but I found so much more than what I was expecting.
Growing up, I had a strong sense of self, and defending myself came easily. I found a bookmark from my elementary years that has a note in my handwriting on the back that says, "Don't you ever, EVER touch my things again." It was public school, and I had attitude.
My little sister had a birthmark as a baby, and I remember being on the playground with her, silently challenging anyone to say a word to her, my eyes meeting other kids' eyes head-on. If they had hurt her, I probably would have knocked them between the eyes. I had swagger.
In high school, I was Student Body President two years in a row. The seniors were less than thrilled that a junior would speak for them at their graduation. I was unapologetic and unafraid. In fact, I discovered that I loved public speaking.
Peer pressure. What peer pressure? I did a move like my dog does, stiffening my whole body. If I didn't want to do something, I refused. Solidly. Stuck in place. Stubborn was what I was.
As a teenager, I was dissatisfied with our youth group at church. We didn't talk about anything spiritual, and I needed more. So, I went to our priest and asked for more. He kindly demurred. I left church for a while. My parents raised me to make my own decisions for my own reasons, and I did.
I loved the freedom of college. I chose my own courses. I met fascinating people. I studied French for a summer in Paris for goodness sakes. Whatever problems I thought I had, I didn't have problems. Life was vibrant and beautiful and self-centered. I was young and naive and ready for a challenge.
My first job was a giant catastrophe. My husband and I were just beginning our lives together, and we were clueless and broke and in a city where we didn't belong. We moved home with our tails between our legs. We had a series of stops and starts, missteps along the way. I found myself losing my voice, my swagger, my confidence.
I went back to graduate school, and I dreamed big. I was accepted to one of the best programs in the country, and I felt wholly undeserving. Looking back, I shouldn't have sold myself so short. What happened to my sense of self? I let people judge me because I look younger than I am, and for the very first time that I can remember, I allowed people to talk to me as a child. Ask my parents. As a child, I rankled when people changed their tone to talk to me. "Why are they talking to me like I'm a kid?" to which my mom replied, "Well, because you are a kid." Even then, I wanted respect, and I expected the respect one human being should show another. And yet, I lost that sense of self. I was so worried about politics and pleasing the right people and not saying the wrong thing to the wrong person that I said little. All my ideas, my hopes, my opinions, I squelched them, just at the time when I had the luxury of being in classes designed to plumb the depths of my thoughts.
I came to hate public speaking.
I lamented to those closest to me that I'd lost something along the way, and I didn't know how to find her.
I had a baby while I was writing my dissertation. In a new city. Six weeks after we'd moved. He weighed 2.5 lbs. It was a shock, and there was no time to think about myself. I was struggling with guilt and exhaustion and fear. And a baby in the hospital.
When my son was 9 months old, I defended my dissertation. I became a doctor of philosophy. I was really proud that I hadn't given up on myself. It was the culmination of a hard-as-hell year for me. I went to an academic conference, and everyone else was newly employed. I felt out-of-place because my world was therapy and developmental milestones. There was no room for anything else, least of all my professional ambition. I pushed pause, taught a few classes part-time when I could make my schedule coordinate with my son's, and resolved to table my ambition for a while.
Nothing will humble you like motherhood. Nothing.
Then, I had another preemie, and again there was no time to think of myself. I delved into the care of my children. There was no choice to be made. I was doing what was right for my family.
But, all those hospital experiences, the determination it takes to parent a special needs child, and my newfound gratefulness at the simple things in life, they were working on me.
Last week, I attended the annual academic conference again. It had been two years since I'd seen most of my friends from graduate school. I also had a chance to see two friends from college and my childhood best friend. It was the first time I was away from my kids in two years. I expected to giggle and chit-chat and have nerdy discussions. I knew taking some time would reinvigorate me and give me a fresh perspective. But, I was wholly unprepared for what I received. The love. The acceptance. The kindness. The warmth. The encouragement. The support. It was absolutely overwhelming. I wasn't the mother or the wife or the health advocate or even the teacher. I was Just Summer. And then the strangest thing happened.
For the first time in a decade, at a place in life where I sometimes look around and marvel at where this journey has taken me, I found what I was missing. I know the exact moment when it happened. I heard myself tell the truth and give some attitude while doing it, and I was amazed. After spending my twenties trying to find a balance between kindness and permissiveness, there she was, feisty, full of sass and a zeal for life.
I wanted to scream, "Where the heck have you been?!"
It was a relief, after all this time. But, it's clear to me. To become this woman, I needed two tiny babies. I needed the career diversions. I needed these challenges, and I am so thankful for it all. On the surface, I am a part-time teacher and a full-time mother. But, underneath, I am Just Summer.
Growing up, I had a strong sense of self, and defending myself came easily. I found a bookmark from my elementary years that has a note in my handwriting on the back that says, "Don't you ever, EVER touch my things again." It was public school, and I had attitude.
My little sister had a birthmark as a baby, and I remember being on the playground with her, silently challenging anyone to say a word to her, my eyes meeting other kids' eyes head-on. If they had hurt her, I probably would have knocked them between the eyes. I had swagger.
In high school, I was Student Body President two years in a row. The seniors were less than thrilled that a junior would speak for them at their graduation. I was unapologetic and unafraid. In fact, I discovered that I loved public speaking.
Peer pressure. What peer pressure? I did a move like my dog does, stiffening my whole body. If I didn't want to do something, I refused. Solidly. Stuck in place. Stubborn was what I was.
As a teenager, I was dissatisfied with our youth group at church. We didn't talk about anything spiritual, and I needed more. So, I went to our priest and asked for more. He kindly demurred. I left church for a while. My parents raised me to make my own decisions for my own reasons, and I did.
I loved the freedom of college. I chose my own courses. I met fascinating people. I studied French for a summer in Paris for goodness sakes. Whatever problems I thought I had, I didn't have problems. Life was vibrant and beautiful and self-centered. I was young and naive and ready for a challenge.
My first job was a giant catastrophe. My husband and I were just beginning our lives together, and we were clueless and broke and in a city where we didn't belong. We moved home with our tails between our legs. We had a series of stops and starts, missteps along the way. I found myself losing my voice, my swagger, my confidence.
I went back to graduate school, and I dreamed big. I was accepted to one of the best programs in the country, and I felt wholly undeserving. Looking back, I shouldn't have sold myself so short. What happened to my sense of self? I let people judge me because I look younger than I am, and for the very first time that I can remember, I allowed people to talk to me as a child. Ask my parents. As a child, I rankled when people changed their tone to talk to me. "Why are they talking to me like I'm a kid?" to which my mom replied, "Well, because you are a kid." Even then, I wanted respect, and I expected the respect one human being should show another. And yet, I lost that sense of self. I was so worried about politics and pleasing the right people and not saying the wrong thing to the wrong person that I said little. All my ideas, my hopes, my opinions, I squelched them, just at the time when I had the luxury of being in classes designed to plumb the depths of my thoughts.
I came to hate public speaking.
I lamented to those closest to me that I'd lost something along the way, and I didn't know how to find her.
I had a baby while I was writing my dissertation. In a new city. Six weeks after we'd moved. He weighed 2.5 lbs. It was a shock, and there was no time to think about myself. I was struggling with guilt and exhaustion and fear. And a baby in the hospital.
When my son was 9 months old, I defended my dissertation. I became a doctor of philosophy. I was really proud that I hadn't given up on myself. It was the culmination of a hard-as-hell year for me. I went to an academic conference, and everyone else was newly employed. I felt out-of-place because my world was therapy and developmental milestones. There was no room for anything else, least of all my professional ambition. I pushed pause, taught a few classes part-time when I could make my schedule coordinate with my son's, and resolved to table my ambition for a while.
Nothing will humble you like motherhood. Nothing.
Then, I had another preemie, and again there was no time to think of myself. I delved into the care of my children. There was no choice to be made. I was doing what was right for my family.
But, all those hospital experiences, the determination it takes to parent a special needs child, and my newfound gratefulness at the simple things in life, they were working on me.
Last week, I attended the annual academic conference again. It had been two years since I'd seen most of my friends from graduate school. I also had a chance to see two friends from college and my childhood best friend. It was the first time I was away from my kids in two years. I expected to giggle and chit-chat and have nerdy discussions. I knew taking some time would reinvigorate me and give me a fresh perspective. But, I was wholly unprepared for what I received. The love. The acceptance. The kindness. The warmth. The encouragement. The support. It was absolutely overwhelming. I wasn't the mother or the wife or the health advocate or even the teacher. I was Just Summer. And then the strangest thing happened.
For the first time in a decade, at a place in life where I sometimes look around and marvel at where this journey has taken me, I found what I was missing. I know the exact moment when it happened. I heard myself tell the truth and give some attitude while doing it, and I was amazed. After spending my twenties trying to find a balance between kindness and permissiveness, there she was, feisty, full of sass and a zeal for life.
I wanted to scream, "Where the heck have you been?!"
It was a relief, after all this time. But, it's clear to me. To become this woman, I needed two tiny babies. I needed the career diversions. I needed these challenges, and I am so thankful for it all. On the surface, I am a part-time teacher and a full-time mother. But, underneath, I am Just Summer.
Tuesday, August 6, 2013
Bellies After Birth
I just read a post on the Huffington Post about body image in the months after pregnancy. Here it is if you're interested:
Kate Middleton and the Mom in the Mirror
I definitely agree with most of what the author says, especially about how unrealistic it is for any of us to believe we'll ever look like we did at 15...particularly in the months after having a baby. One of my pet peeves is celebrities acting like they didn't have trainers and cooks and housekeepers and nannies to help them have the time and energy to lose post-pregnancy weight in a matter of weeks. Besides, it's their job to look good, as superficial as that sounds. Most of them need to get back into shape so they can act or perform or whatever it is that they do in the public eye. Most of us don't have that kind of help and shouldn't have that kind of pressure. But, in response to Kate Middleton's small post-baby bump, the Weekend Today Show meteorologist said that she never knew women's bellies didn't just shrink after having the baby. That is what we're dealing with here.
[Insert a major eye-roll.]
How in the world can a woman spend 40 weeks growing a baby and then 24 hours later look like it never happened?! It's illogical, idiotic, and insulting. Especially for a woman to say such a thing about another woman!
In the weeks and months after I had my babies, I had people tell me that I looked like I had never been pregnant, and it didn't feel like a compliment. I knew that's how it was intended, but here's the reality: if I had carried my babies full-term, I wouldn't have looked that way. I only gained 15 pounds with my son, because I had him 14 weeks early. I hadn't even gotten to the point in pregnancy yet when you actually start gaining a pound a week. When people commented on how slim I was, as I trudged in and out of the NICU, it actually made me feel guilty. When well-meaning moms said, "What's your secret?" I wanted to respond with, "Skipping the whole third trimester."
And so here's my point. If the only way you can lose all your baby weight in a month or two is either to have an army of people helping you or have your baby three months early, then I think such a goal is totally unrealistic. We should be more focused on the cute baby and less focused on the remaining belly. And at least give a mom the same amount of time to lose the belly as it took growing the baby in it.
Kate Middleton and the Mom in the Mirror
I definitely agree with most of what the author says, especially about how unrealistic it is for any of us to believe we'll ever look like we did at 15...particularly in the months after having a baby. One of my pet peeves is celebrities acting like they didn't have trainers and cooks and housekeepers and nannies to help them have the time and energy to lose post-pregnancy weight in a matter of weeks. Besides, it's their job to look good, as superficial as that sounds. Most of them need to get back into shape so they can act or perform or whatever it is that they do in the public eye. Most of us don't have that kind of help and shouldn't have that kind of pressure. But, in response to Kate Middleton's small post-baby bump, the Weekend Today Show meteorologist said that she never knew women's bellies didn't just shrink after having the baby. That is what we're dealing with here.
[Insert a major eye-roll.]
How in the world can a woman spend 40 weeks growing a baby and then 24 hours later look like it never happened?! It's illogical, idiotic, and insulting. Especially for a woman to say such a thing about another woman!
In the weeks and months after I had my babies, I had people tell me that I looked like I had never been pregnant, and it didn't feel like a compliment. I knew that's how it was intended, but here's the reality: if I had carried my babies full-term, I wouldn't have looked that way. I only gained 15 pounds with my son, because I had him 14 weeks early. I hadn't even gotten to the point in pregnancy yet when you actually start gaining a pound a week. When people commented on how slim I was, as I trudged in and out of the NICU, it actually made me feel guilty. When well-meaning moms said, "What's your secret?" I wanted to respond with, "Skipping the whole third trimester."
And so here's my point. If the only way you can lose all your baby weight in a month or two is either to have an army of people helping you or have your baby three months early, then I think such a goal is totally unrealistic. We should be more focused on the cute baby and less focused on the remaining belly. And at least give a mom the same amount of time to lose the belly as it took growing the baby in it.
Monday, August 5, 2013
A Photo I Hate
You know how sometimes you remember exactly what you were thinking when a photo was taken? I was organizing some photos yesterday, and I came across this one. It was taken just a few days after M's birth, the first time I was able to hold her.
I didn't want my mom to take the picture because I was about to cry. I was looking into M's starved, skinny, sunken little face, and I was thinking, "I have failed. I have failed you!" This should have been a special moment, the first time I had M in my arms. But, when I see it, I feel a crush of sadness. I can see the pain I was trying to hide. It is right there, on my face.
This photo breaks my heart.
Friday, August 2, 2013
The Face of Preeclampsia
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Thursday, August 1, 2013
Preemie Mama Thoughts
How does a Preemie Mama think?
The other day I noticed that M recognized her brother's name. I said it over and over, and she searched the room with her eyes until they settled on him. And because she's got the sweetest disposition, she smiled every, single time she recognized him. I was surprised that she already knows his name, and she's known her own name for a while. So, I started testing her. Did she know Mama and Papa? And she did. Each time she searched the room until she found the person. Of course, all parents are excited to see their child learning, but here's the difference. I am a Preemie Mama surrounded by statistics about all the ways my children will be different, abnormal, delayed. I am thrilled every time I see J run or laugh or talk. I am overjoyed at how smart he is--far more intelligent than my husband or me. It is just another way he has overcome the odds.
So, what was my first thought at realizing M is learning names? Relief. Because it means that she's already overcome some of the statistics.
And that's how a Preemie Mama thinks.
The other day I noticed that M recognized her brother's name. I said it over and over, and she searched the room with her eyes until they settled on him. And because she's got the sweetest disposition, she smiled every, single time she recognized him. I was surprised that she already knows his name, and she's known her own name for a while. So, I started testing her. Did she know Mama and Papa? And she did. Each time she searched the room until she found the person. Of course, all parents are excited to see their child learning, but here's the difference. I am a Preemie Mama surrounded by statistics about all the ways my children will be different, abnormal, delayed. I am thrilled every time I see J run or laugh or talk. I am overjoyed at how smart he is--far more intelligent than my husband or me. It is just another way he has overcome the odds.
So, what was my first thought at realizing M is learning names? Relief. Because it means that she's already overcome some of the statistics.
And that's how a Preemie Mama thinks.
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