You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about. Today, I am having trouble.
I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had. I might never get to that point. I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.
Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome. I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.
I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered. The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons. I can understand needing a place to work through their feelings.
I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis. I'm just acknowledging that it happens. I don't wish to drag these women through the mud. There are so many complex issues to the dilemma that factor in: Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it. I really do.
That a woman might make this decision at all is not what bothered me. At least, that's only a small part of it. It does bother me because I take it as a reflection of how people feel about my living, breathing kid. I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her. It isn't about me and I don't wish to make it about me. It's just hard to separate, sometimes. Her body, her decision. I understand and agree that this is the way it should and must be.
What really bothered me was reading how some of these "procedures" take place. I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies. Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms. Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.
It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process. They talked about being sad over their "lost" babies.
This was where I began to lose it.
I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive. Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?
I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.
I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.
I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision. I completely understand this logic if a fetus' condition is incompatible with life. There are plenty of complications that fall into this category, but Down syndrome is not one of them. Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long. But most of these issues are correctable. With intervention, the vast majority of babies born with T-21 will not just live, but thrive.
There is also plenty of debate about how much intervention is too much and I completely understand it. I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator. Some were three and four months old. It is worth noting that none of them had Down syndrome. One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born. It was truly the saddest baby smile I have ever witnessed. I want to cry thinking about it now, even fourteen years later. I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles. Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.
I often wonder what happened to him.
All this begs the question: At what point does it become worth the fight? Understandably, it is different for everyone. I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair. I think about the people I know who are dependent on various interventions to live. I wonder at what point they would feel like their lives were not worth living. Mostly, I see people who are at peace with their circumstances. Whether you want these circumstances for yourself or your child is mostly irrelevant. Most of us will never know what it feels like to be in those shoes.
So, what of these parents who decide to let their children go? At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred. How DARE they write about how sad they were!!! THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!! FUCK THEIR SADNESS!!!
Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me. It felt like killing. I began questioning my own pro-choice views. I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat. I have always found late term abortions troubling, but conceded that they needed to be legal. I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe. Yes, it's an option, but not one that I would want forced on anyone. There are plenty of kids languishing in the system, already.
In the spirit of full disclosure, I had an abortion myself, in my early twenties. I don't regret it and I don't feel guilty about it. The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy. I might have married that other guy. In my view, I saved the beautiful family I have now by sacrificing those cells years ago. Maybe you will call me a hypocrite. Who am I to judge anyone? I also have the benefit of hindsight working for me. Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury. All they can see is NOW and the future is a scary unknown. I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions. It's not my place to judge or question them. I can only speak about my own feelings.
I don't know where to draw the line for anyone else. It's not my right to draw that line. All I know is that I am troubled by this discovery. I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings. Hindsight might give us blinders.
I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life. She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did. Again, hindsight in action. Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.
So, what is the difference? You might be wondering. The difference is that my kid and kids like him don't suffer from Down syndrome. They are living and thriving into their 50's, 60's and 70's. And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes. And I am trying, mightily, to put myself in yours. I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.
I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement. I believe in choice. I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.
Showing posts with label childbirth. Show all posts
Showing posts with label childbirth. Show all posts
Saturday, February 1, 2014
Tuesday, January 14, 2014
Heart Tale
In 1998, when our oldest son turned two, my husband and I started thinking that it would be nice to have another child. Suddenly, our baby was turning into a big boy and we were starting to miss that "new baby" smell.
It was October when we found out we would be parents again. We hoped for another boy to be best friends with our oldest.
Months passed and my pregnancy was smooth. In February, we went for an ultrasound. The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound?
We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather. The alarm bells did not go off at all. At the level two appointment, I had no fear until the technician left the room and came back in with my OB. "Just trying to see his heart!", they chuckled uncomfortably. He suggested that we talk in his office after I wiped the goo from my stomach.
Here is where the alarm bells started going off.
We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.
He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome. I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.
We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.
Waiting really sucks.
Talking to the pediatric cardiologist was surreal. She explained the diagnosis: Complete Atrioventricular Canal Defect. It sounded scary. Here is the definition taken from the American Heart Association website:
A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.
This was no run-of-the-mill hole that would close on it's own. My baby had a big hole where he should have valves and chambers. I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that. This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.
"But, but ( I kept saying) he is growing so well!" and he was. I could not imagine how he could be so ill when he seemed to be thriving in my belly. The truth was, his heart didn't have to do much in the womb. I was doing most of the work at this point. I was happy to keep him safe for the time being and terrified of what would happen when he was born.
In March, we found out our second son had Down syndrome.
We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us. So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure. But we didn't know that, yet. This was a time before Facebook or Google. Finding information about Charles' issues was daunting and mostly, really scary. Hardly any of the information I found was comforting.
The weekend after the Down syndrome diagnosis, we went out to breakfast. We were scared and sad and looking to distract our two year old. When we sat down, we saw a family in a booth nearby. Like us, they were a mom and dad and son. Their son looked to be about fifteen and he had Down syndrome. I marveled at how totally normal they looked; how happy. I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine. We would get through and someday, we would be the family for someone else to look at and say "Huh. They look so normal".
If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.
Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm. He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.
When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy. I had never been more happy to meet another human being in my life. After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.
Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight. He was not what you would call a champion eater, so I was pumping breast milk night and day for him. He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.
By the time he was four months old, we were giving him medicine to offset the affects of heart failure. I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid. At this point, he had bulked up sufficiently that they decided to schedule his surgery. He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.
As I said before, waiting sucks.
I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever. I put my hand over his broken little heart and willed everything to work out well.
As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio. I literally can't type those words or hear the opening notes of the song without crying.
Our boy was so little that the anesthesiologist carried him in his arms back to the operating room. The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.
Then, the waiting. So much sucky waiting.
We were warned that our baby would be unconscious and that he would look bloated. He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.
Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery. He was home within a week. The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.
It is amazing to me that a surgeon could take my poor son's little mess of a heart and make it into a well functioning organ, but that is exactly what he did. I was grateful to him for delivering my son back to me and even more grateful that when he needed a second repair to fix a leaky valve almost six years later, the same, amazing surgeon would again bring him safely through and make his heart better than new.
The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us. He handed over his Gameboy, let us hug and kiss him and wheeled away from us.
Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone. Keeping a six year old boy still is no easy task. Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten. I shed many happy tears that day.
Charles is now fourteen and he has a routine visit to the cardiologist just once a year. His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore. He takes no heart medication at all and has no restrictions because of his condition. The only physical reminder of his surgeries is the scar from his clavicle to above his navel. He talks about it now like it's a war wound. He's kind of proud of it. He's definitely earned that right.
It was October when we found out we would be parents again. We hoped for another boy to be best friends with our oldest.
Months passed and my pregnancy was smooth. In February, we went for an ultrasound. The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound?
We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather. The alarm bells did not go off at all. At the level two appointment, I had no fear until the technician left the room and came back in with my OB. "Just trying to see his heart!", they chuckled uncomfortably. He suggested that we talk in his office after I wiped the goo from my stomach.
Here is where the alarm bells started going off.
We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.
He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome. I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.
We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.
Waiting really sucks.
Talking to the pediatric cardiologist was surreal. She explained the diagnosis: Complete Atrioventricular Canal Defect. It sounded scary. Here is the definition taken from the American Heart Association website:
A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.
This was no run-of-the-mill hole that would close on it's own. My baby had a big hole where he should have valves and chambers. I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that. This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.
"But, but ( I kept saying) he is growing so well!" and he was. I could not imagine how he could be so ill when he seemed to be thriving in my belly. The truth was, his heart didn't have to do much in the womb. I was doing most of the work at this point. I was happy to keep him safe for the time being and terrified of what would happen when he was born.
In March, we found out our second son had Down syndrome.
We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us. So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure. But we didn't know that, yet. This was a time before Facebook or Google. Finding information about Charles' issues was daunting and mostly, really scary. Hardly any of the information I found was comforting.
The weekend after the Down syndrome diagnosis, we went out to breakfast. We were scared and sad and looking to distract our two year old. When we sat down, we saw a family in a booth nearby. Like us, they were a mom and dad and son. Their son looked to be about fifteen and he had Down syndrome. I marveled at how totally normal they looked; how happy. I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine. We would get through and someday, we would be the family for someone else to look at and say "Huh. They look so normal".
If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.
Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm. He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.
When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy. I had never been more happy to meet another human being in my life. After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.
Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight. He was not what you would call a champion eater, so I was pumping breast milk night and day for him. He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.
By the time he was four months old, we were giving him medicine to offset the affects of heart failure. I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid. At this point, he had bulked up sufficiently that they decided to schedule his surgery. He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.
As I said before, waiting sucks.
I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever. I put my hand over his broken little heart and willed everything to work out well.
As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio. I literally can't type those words or hear the opening notes of the song without crying.
Our boy was so little that the anesthesiologist carried him in his arms back to the operating room. The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.
Then, the waiting. So much sucky waiting.
We were warned that our baby would be unconscious and that he would look bloated. He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.
Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery. He was home within a week. The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.
The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us. He handed over his Gameboy, let us hug and kiss him and wheeled away from us.
Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone. Keeping a six year old boy still is no easy task. Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten. I shed many happy tears that day.
Charles is now fourteen and he has a routine visit to the cardiologist just once a year. His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore. He takes no heart medication at all and has no restrictions because of his condition. The only physical reminder of his surgeries is the scar from his clavicle to above his navel. He talks about it now like it's a war wound. He's kind of proud of it. He's definitely earned that right.
Wednesday, September 4, 2013
Sexual Olympics(?!), Life, Love and Living with these Weirdos.
This blog title is in honor of an epic autocorrect. The words the poster meant to type were "Special Olympics" and instead got "sexual Olympics" and did not realize it until 47 comments were posted under it. Ooops.
Anyway...
I have been "dealing" with Down syndrome for more than fourteen years. I use the term dealing because, good or bad, it is something that needs to be dealt with, from people's attitudes, to medical issues, to school, to looking towards the future; it all needs to be dealt within the context of how Down syndrome does or does not affect all these things. Confusing? Yes, it is.
It's a complicated journey, but, so is life. I try and remind people of this when they think having a kid with Down syndrome is any harder than having a kid without it. It's not harder, really, most of the time it's just life. I really don't know any better.
My oldest was born six weeks early. He didn't have any issues, other than jaundice, but he had to stay in the hospital for a few days after I was released. At the time (17 years ago) I felt a little sorry for myself that I had to leave my baby behind, pump breast milk for his feedings and schlep back and forth to the hospital. In the scheme of things, I now realize that this was a small thing in comparison to what others go through, but at the time, as a young, new mom, it felt monumental.
After those first few trying and jaundiced weeks, our baby thrived and became, to us, the most brilliant and adorable child ever conceived.
When I was pregnant with my Charles, my oldest was a sweet and precocious two year old. Sometime in those nine months that I was waiting for Charles, we noticed a change in his (OS's) behavior. He started obsessing over bathrooms and bathroom fixtures. Maybe this was really not that strange, since he was on the verge of potty training, but it was more than interest. He was manic about it. He HAD to explore every bathroom, every place we went. More than once, I had to drag him out of someones shower.
He also became worried about people leaving and had to say goodbye, four, five, twenty seven times before they actually walked out the door. Then, he would say "I have to blow you kisses!" and it sounds cute, but he would be seriously panicking and would go ballistic if you did not return the required number of kisses to him. It was exhausting to watch and worrisome, of course, because here I was, thinking I had the perfect child, pregnant with the next child (and I had no idea what was in store with this one, yet) and here he was acting all weird! I just kept thinking "what the hell?". I spent every day with him. I rarely left him, even in the hands of his capable and loving dad and I can count on one hand the number of times we had babysitters when he was little.
He had no reason to fear me leaving, he saw his dad every day for several hours before bed, we had a consistent routine, his nap times and bedtimes were strictly observed. I felt like we were doing everything right and I struggled with his irrational behaviors. If I had just realized back then that those behaviors were perfectly rational for a kid on the autism spectrum, I may have worried less.
Once we had some answers for him, it became easier to manage, but it would be almost four years, many doctors appointments and IEP's before we'd get a "maybe it could be Asperger's" diagnosis. Oh, the subtle nuances of neurological spectrum. Sigh. In the meantime, OS had been kicked out of first grade for kicking and threatening another classmate and spitting at his teacher. Huge Freaking Sigh.
We were still in the early stages of this struggle with OS when we got the news that Charles, our second boy, would be born with Down syndrome. Actually, this news came in stages. And all the stages were scary. The first stage was the news that he had a serious heart condition; a complete A.V. Canal defect. Imagine a heart with two big chambers instead of four and that's basically what it means. So, heart surgery was in this baby's future, for sure.
What wasn't sure at first was whether or not he had Down syndrome. They suspected he did, but we wouldn't know unless we had an amniocentesis.
A few weeks later, we had those results and Trisomy 21 it was.
At this point, we already knew that we were having a boy and we had already named him Charles. He was ours. This little bundle of broken heart pieces was on his way and we had to prepare.
I'm not going to say that it was all rainbows and unicorns.
No. There were plenty of tears shed. There was plenty of extra worry now that OS was having issues AND we were having a baby that was going to need extra love and attention.
I think we had one pretty rotten weekend, maybe a few days more than that, but not much. One day, a few days after the news, we went out to lunch. We were sitting down to eat when in walks a couple with their son. He looked to be a teenager and he had Down syndrome. My husband and I looked at each other and we both knew it would be okay. They looked so normal. They didn't look depressed or angry or unhappy. They just looked like a happy family. That was all we wanted to be.
I don't think I cried about the diagnosis after that. Sure, I worried. I especially worried about his heart, because that all seemed so scary. Looking back on it all these years later, I wish I could tell myself not to be scared, that someday, that unborn kid would be a silly, strong, John Cena and Michael Jackson imitating ball of energy. That he would make us laugh. That he would have friends. That we would be happy. Not happy in spite of Charles having Down syndrome, or OS having Autism; just happy because we are a family and we love each other.
After all the craziness that surrounded us in those early day with Charles and pretty much the day after I finally zipped up my pre-pregnancy jeans, we got another surprise in the form of a positive pregnancy test. Baby number three was due eleven months after Charles' birthday.
Again, I was scared. Scared to go through all of that (while it was still very fresh in my mind!) again. Scared of being broke. Scared of not being able to give any of my kids the attention they needed. Scared of having to get a minivan! And yet, here we are 14 years later, with three teen aged sons, the youngest of which is my Charles' best friend and champion. He is his buddy, his occasional interpreter, his roommate and his school peer. I can't imagine a better little (much taller) brother for Charles than E.
I guess what I am trying to get at (in a really rambly and incomprehensible way), is that we have our challenges. My kids are not the easy, drop them off at school and don't worry about it, kind of kids. My kids all have Individualized Education Plans (IEP's). My oldest and youngest are both on the Autism spectrum and have very different issues. It makes life interesting. Sometimes, it makes life harder, but only on the bad days.
Who doesn't have those?
We are as "normal" a family as any other, especially if normal means making big weekend breakfasts, driving to see relatives every summer, going to sporting events and concerts, watching movies, arguing and laughing, then we are a typical bunch. I've often said that the only real difference I can see between my family and others is that our lows might be lower, but our highs are higher. They just are. It all balances out in the end.
Here it is. It's life with kids. You take the good with the bad, the weird with the wonderful. Down syndrome or Autism doesn't change what makes being a family, a family; how could it?
Anyway...
I have been "dealing" with Down syndrome for more than fourteen years. I use the term dealing because, good or bad, it is something that needs to be dealt with, from people's attitudes, to medical issues, to school, to looking towards the future; it all needs to be dealt within the context of how Down syndrome does or does not affect all these things. Confusing? Yes, it is.
It's a complicated journey, but, so is life. I try and remind people of this when they think having a kid with Down syndrome is any harder than having a kid without it. It's not harder, really, most of the time it's just life. I really don't know any better.
My oldest was born six weeks early. He didn't have any issues, other than jaundice, but he had to stay in the hospital for a few days after I was released. At the time (17 years ago) I felt a little sorry for myself that I had to leave my baby behind, pump breast milk for his feedings and schlep back and forth to the hospital. In the scheme of things, I now realize that this was a small thing in comparison to what others go through, but at the time, as a young, new mom, it felt monumental.
After those first few trying and jaundiced weeks, our baby thrived and became, to us, the most brilliant and adorable child ever conceived.
When I was pregnant with my Charles, my oldest was a sweet and precocious two year old. Sometime in those nine months that I was waiting for Charles, we noticed a change in his (OS's) behavior. He started obsessing over bathrooms and bathroom fixtures. Maybe this was really not that strange, since he was on the verge of potty training, but it was more than interest. He was manic about it. He HAD to explore every bathroom, every place we went. More than once, I had to drag him out of someones shower.
He also became worried about people leaving and had to say goodbye, four, five, twenty seven times before they actually walked out the door. Then, he would say "I have to blow you kisses!" and it sounds cute, but he would be seriously panicking and would go ballistic if you did not return the required number of kisses to him. It was exhausting to watch and worrisome, of course, because here I was, thinking I had the perfect child, pregnant with the next child (and I had no idea what was in store with this one, yet) and here he was acting all weird! I just kept thinking "what the hell?". I spent every day with him. I rarely left him, even in the hands of his capable and loving dad and I can count on one hand the number of times we had babysitters when he was little.
He had no reason to fear me leaving, he saw his dad every day for several hours before bed, we had a consistent routine, his nap times and bedtimes were strictly observed. I felt like we were doing everything right and I struggled with his irrational behaviors. If I had just realized back then that those behaviors were perfectly rational for a kid on the autism spectrum, I may have worried less.
Once we had some answers for him, it became easier to manage, but it would be almost four years, many doctors appointments and IEP's before we'd get a "maybe it could be Asperger's" diagnosis. Oh, the subtle nuances of neurological spectrum. Sigh. In the meantime, OS had been kicked out of first grade for kicking and threatening another classmate and spitting at his teacher. Huge Freaking Sigh.
We were still in the early stages of this struggle with OS when we got the news that Charles, our second boy, would be born with Down syndrome. Actually, this news came in stages. And all the stages were scary. The first stage was the news that he had a serious heart condition; a complete A.V. Canal defect. Imagine a heart with two big chambers instead of four and that's basically what it means. So, heart surgery was in this baby's future, for sure.
What wasn't sure at first was whether or not he had Down syndrome. They suspected he did, but we wouldn't know unless we had an amniocentesis.
A few weeks later, we had those results and Trisomy 21 it was.
At this point, we already knew that we were having a boy and we had already named him Charles. He was ours. This little bundle of broken heart pieces was on his way and we had to prepare.
I'm not going to say that it was all rainbows and unicorns.
No. There were plenty of tears shed. There was plenty of extra worry now that OS was having issues AND we were having a baby that was going to need extra love and attention.
I think we had one pretty rotten weekend, maybe a few days more than that, but not much. One day, a few days after the news, we went out to lunch. We were sitting down to eat when in walks a couple with their son. He looked to be a teenager and he had Down syndrome. My husband and I looked at each other and we both knew it would be okay. They looked so normal. They didn't look depressed or angry or unhappy. They just looked like a happy family. That was all we wanted to be.
I don't think I cried about the diagnosis after that. Sure, I worried. I especially worried about his heart, because that all seemed so scary. Looking back on it all these years later, I wish I could tell myself not to be scared, that someday, that unborn kid would be a silly, strong, John Cena and Michael Jackson imitating ball of energy. That he would make us laugh. That he would have friends. That we would be happy. Not happy in spite of Charles having Down syndrome, or OS having Autism; just happy because we are a family and we love each other.
After all the craziness that surrounded us in those early day with Charles and pretty much the day after I finally zipped up my pre-pregnancy jeans, we got another surprise in the form of a positive pregnancy test. Baby number three was due eleven months after Charles' birthday.
Again, I was scared. Scared to go through all of that (while it was still very fresh in my mind!) again. Scared of being broke. Scared of not being able to give any of my kids the attention they needed. Scared of having to get a minivan! And yet, here we are 14 years later, with three teen aged sons, the youngest of which is my Charles' best friend and champion. He is his buddy, his occasional interpreter, his roommate and his school peer. I can't imagine a better little (much taller) brother for Charles than E.I guess what I am trying to get at (in a really rambly and incomprehensible way), is that we have our challenges. My kids are not the easy, drop them off at school and don't worry about it, kind of kids. My kids all have Individualized Education Plans (IEP's). My oldest and youngest are both on the Autism spectrum and have very different issues. It makes life interesting. Sometimes, it makes life harder, but only on the bad days.
Who doesn't have those?
We are as "normal" a family as any other, especially if normal means making big weekend breakfasts, driving to see relatives every summer, going to sporting events and concerts, watching movies, arguing and laughing, then we are a typical bunch. I've often said that the only real difference I can see between my family and others is that our lows might be lower, but our highs are higher. They just are. It all balances out in the end.
Here it is. It's life with kids. You take the good with the bad, the weird with the wonderful. Down syndrome or Autism doesn't change what makes being a family, a family; how could it?
Thursday, July 18, 2013
Ten Percent? (Updated 4/15/15 to include new information)
The original is copied from a post I did on Facebook four years ago. I have edited it to include up to date information. New information in bold text, below. ~ ADH
I read a statistic the other day that made me very sad. 90% of pregnant women who receive a diagnosis of Down Syndrome for their fetuses choose to abort. It’s a statistic that I had read before, but, now it hurt even more because of the chance that soon, that number may reach almost 100% because of earlier, less invasive testing and very little hands on knowledge of Down Syndrome on the part of doctors.
(New information has come to light and I think it is very important to share it. Please see the studies here and here. Brian Skotko puts the number at 74%...and that 74% only applies to pregnancies where the mother has chosen to have DIAGNOSTIC testing done. I emphasize that word because the early blood tests are not diagnostic; they only give a statistical number. Women with elevated risk according to these tests can choose to have a diagnostic test, such as chorionic villus sampling or amniocentesis done to get a true diagnosis.
Therefore, it is FALSE to claim that 90% of babies with Down syndrome are not born (which seems to be the way people, including myself in the past, incorrectly interpret things). The numbers vary depending on what studies you look at, but the bottom line is that 90% is nowhere near correct and further, when you look at the actual percentage of terminations in ALL Down syndrome pregnancies, not just that small number that have been subjected to diagnostic testing, the number is somewhere around 30%. What a tremendous difference! And what could this potentially mean to the woman getting this information today? For me, it means the difference between feeling a part of a very small minority versus a rather large majority.
I think it is very important that these numbers be shared far and wide.
Here is a link to another post by Mark Leach who explains why this information is not all rainbows and unicorns. He also breaks down the numbers really well; in a way even a math-challenged person like myself can (sort of) understand: Mark's post.
It still remains to be seen what impact the early blood tests will have on these numbers, as more women could potentially opt for additional, diagnostic testing, but I find it heartening to know that 90% is not a true number, nor even close to it.)
(New information has come to light and I think it is very important to share it. Please see the studies here and here. Brian Skotko puts the number at 74%...and that 74% only applies to pregnancies where the mother has chosen to have DIAGNOSTIC testing done. I emphasize that word because the early blood tests are not diagnostic; they only give a statistical number. Women with elevated risk according to these tests can choose to have a diagnostic test, such as chorionic villus sampling or amniocentesis done to get a true diagnosis.
Therefore, it is FALSE to claim that 90% of babies with Down syndrome are not born (which seems to be the way people, including myself in the past, incorrectly interpret things). The numbers vary depending on what studies you look at, but the bottom line is that 90% is nowhere near correct and further, when you look at the actual percentage of terminations in ALL Down syndrome pregnancies, not just that small number that have been subjected to diagnostic testing, the number is somewhere around 30%. What a tremendous difference! And what could this potentially mean to the woman getting this information today? For me, it means the difference between feeling a part of a very small minority versus a rather large majority.
I think it is very important that these numbers be shared far and wide.
Here is a link to another post by Mark Leach who explains why this information is not all rainbows and unicorns. He also breaks down the numbers really well; in a way even a math-challenged person like myself can (sort of) understand: Mark's post.
It still remains to be seen what impact the early blood tests will have on these numbers, as more women could potentially opt for additional, diagnostic testing, but I find it heartening to know that 90% is not a true number, nor even close to it.)
Before you think you know where I am going with this, let me assure you that I am very pro-choice. I have no problem with abortion in general and I feel that prenatal testing is very helpful. It’s a good idea to know something about your child before they are born, just to eliminate a few of the unknowns, which are many.
The problem arises when you can learn so much about this potential life that it becomes nothing more than a series of cells; some coveted and some not-so-much. In some parts of the world, it is a defect to be born female. In some places, women have to be imported because the shortage is so great due to selectively eliminating the “wrong” sex prenatally.
Let me repeat: in some places it is a defect to be born female.
In China, eugenics have been practiced by law since 1995. “Unfit” couples are forced into sterilization before they are allowed to marry and abortion due to “undesirable” attributes in a fetus are sky high. Proponents of China’s eugenics law state that the less money you have to spend on these “defective individuals”, the more there will be for those who can better “contribute”. When did love and sex and procreation and the messy human experience become all about money?
Does a quest for perfection make a society better? Did it make the Nazis better? Or do we look at them today as the absolute worst in mankind?
The problem with perfection is that everyone has a different opinion of what “perfect” is. I think Jason Statham is the height of perfection in a man; witty, charming, sexy, oh, I could go on. But, Jason Statham is also balding and kind of short. Does this make him less perfect? Not, in my eyes, it doesn’t.
I find men with pear shaped hips unattractive; ditto, for lack of a strong chin. But, if every man looked like either The Rock or Jason Statham, (both perfect men as far as I am concerned) how would I know what “attractive” means to me?
I have a twelve year old son with Down Syndrome. Every time I read one of these statistics, it brings me back to my own decisions. I honestly ask myself “if I knew then, what I know now, would I change anything?” and I honestly answer “Hell, if I knew then what I know now, I might not have any kids at all!” and I would be telling the truth.
Kids are messy. They rob you of your youth, your looks, precious sleep and that space that you were saving for your library. They puke on your leather couch. They fart in front of people you want to impress. They burp loudly at the quietest moment in the movie, in a crowded theater. Boys pee near the toilet and when it does actually reach the bowl, it usually hits the seat first; the seat you sit on in the middle of the night without looking…GAH!!!
Kids are expensive! Has anyone seen how much it costs to fit two preteen and one teenaged boy with shoes? Holy crap! Forget about that romantic Greek isle cruise you’ve been saving for; it’s all going to go to Chuck Taylor‘s. Parents to be? Forget about college and start buying shoes on sale now!!! Believe me, those Chuck Taylor’s will still be in style and if they aren’t, it will be a great lesson in managing disappointment.
Kids also fill you with pride. Sometimes that pride comes from finally taking off the training wheels so they can wobble (on their own!) down the sidewalk. Sometimes it comes in the form of a letter from a teacher saying that your child is in the school spelling bee. Sometimes it is in the form of a wrestling pin or a game winning basket or goal. And sometimes, it is in the form of an understandable word at the age of four or taking a few steps at the age of three. For me, it comes, when the kids at school greet my Charles with a hug or a high five or a “what’s up, dude?”. It often comes at Special Olympics events where I cannot contain the happy tears.
Pride, like beauty, is in the eye of the beholder.
~ Salma Hayek
I don't want to hear the argument about “eliminating suffering”. Who are you to judge? My kid isn’t suffering; not by a long shot. He is loved and loves life. He suffers no more or less than any other middle class kid in the U.S.
I guess my point is this: I don’t think that because something is scary, or messy, or overwhelming, or expensive, that it should be categorically eliminated. I don’t want to live in a world where difference is eliminated. If it were, we would be missing out on 90% of what makes life, life. If we bypass struggles and suffering, how will we know when we’ve reached our goals? And what beauty will we miss along the way?
Charles is now almost 16, in high school and still loves kitty cats, along with lifting weights and talking about girls.
Thursday, May 16, 2013
It's Getting Weird in Here - Amy's Brain; Part One Zillion
What is up with men who feel the need to compare some kind of pain they have had to childbirth? Are they seriously bothered that a woman might be tougher than them in this arena? Like they don't have enough power already? You know, like making more money and holding more elected offices (by a lot); they also need to win the "pain threshold contest"? How insecure do you have to be to think like this? I bet they are not challenging former POW's to a pain contest. "Oh, bamboo under the nails? That's nothing. I had a kidney stone, once." Please. Get a life.
Oh, and kidney stone guy? Guess what? Women can get those, too! But, you will never be pregnant. You will never carry what amounts to a giant parasite in your body for nine months before passing it through the most sensitive part of your body and then breastfeed it for twelve months afterwards. It will never happen.
Don't even get me started on mastitis and how it feels like pulling a red hot poker out of your nipple.
Why can't you let women have this ONE and just be thankful that they do? With all the shit we have to deal with on a monthly basis; couldn't you just be like: "Wow. Well done. Thanks for putting up with that!"?
And do me a favor. If you and your partner decide to procreate, please FOR GODSAKES, do not say "We're pregnant!" I am just warning you now, that if I hear this come out of your mouth, I will have to punch you in the nads. Let's see how pregnant you think you feel with that pain.
Oh, and kidney stone guy? Guess what? Women can get those, too! But, you will never be pregnant. You will never carry what amounts to a giant parasite in your body for nine months before passing it through the most sensitive part of your body and then breastfeed it for twelve months afterwards. It will never happen.
Don't even get me started on mastitis and how it feels like pulling a red hot poker out of your nipple.
Why can't you let women have this ONE and just be thankful that they do? With all the shit we have to deal with on a monthly basis; couldn't you just be like: "Wow. Well done. Thanks for putting up with that!"?
And do me a favor. If you and your partner decide to procreate, please FOR GODSAKES, do not say "We're pregnant!" I am just warning you now, that if I hear this come out of your mouth, I will have to punch you in the nads. Let's see how pregnant you think you feel with that pain.
How this guy ever got laid while being such an obvious douche, I will never know.
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