I am going to turn away from the serious subject matter and review a couple of books that I have been using for history & science. Please keep in mind this is my first attempt at reviewing ever and that I am also learning to type on a tablet. Mistakes will be made and probably not noticed by me until later. I am definitely ordering a keyboard, so be patient.
The first book we enjoyed is The Kid's Book of Clouds and Sky by Frank Staub. This is our first experience with this author but he has also written many other educational books on a variety of science and social topics.
The targeted grade level for this book is 5-7, and indeed, some of the words are on the difficult side and it can get lengthy for my guys, who are in 1st and 3rd. The book is written as a series of questions, which is nice for easing the length. I was able to read a question or two, or a page or two, each day and we weren't feeling overwhelmed.
With every question topic, there is a group of small photos with captions that reinforce the topic discussed. This is not normally a format I get behind, because I have a pretty short attention span and a lot of clutter on a page overwhelms me quickly and tends to confuse the boys. In this case, though, it is done simply and with purpose and for the most part the photos and captions really do reinforce the topics instead of confusing them.
I chose this book primarily to help teach cloud formations, but we really got a mini-course in weather forcasting. It was fun. The book includes several mini-experiements such as making rainbows with water and prisms and making clouds in a jar. I think most of the experiments are too simple for the average 5-7 grader, but my boys loved them. They begged to do more experiments and then to do them again, which is really music to a mother's ears.
While we learned a great deal about our atmosphere and weather patterns and a lot of the material was on or around our level, the book does go into great detail on cloud types and is a bit more than I was originally looking for. I thought it was important that the boys know the basic cirrus, cumulus, stratus and cumulonimbus and thought they would be confused by terms like altostratus and cirrocumulus.
That is, until we went outside. We spent a lot of time looking at the sky with and since this book and we noticed nearly all of the cloud types identified in the book in our own backyard view of the sky. The boys did ask for an explanation of a cirrocumulus sky and they seemed to enjoy terms like 'mackerel sky'. I think a lot of sky time is a must to learn all of the terms and topics covered.
Almost as a bonus, the book also covers the night sky, auroras, constellations and moon phases. It provided a good introduction to our next topic, which will be the moon, the stars and the planets.
While my third grader probably got more out of this than the first grader, I think we all now have a greater understanding of our sky. This is worth a check out at the library, at least.
Stay tuned for my review of
The American Story: 100 True Tales from American History
Friday, May 20, 2011
Thursday, May 19, 2011
In the Wake...
Yesterday evening, I was driving back from town on the quaint little road that winds through the river valley and I was thinking of how much I love this sleepy little area. I've lived a lot of places, but here the time seems almost suspended, especially when the sun is shining down on the green and golden hills surrounding our home.
But as the thought of love entered my brain, a little shot of pain was felt in my gut. We are faced with leaving this place. It's mostly out of our control; this little fantasy life is fleeting and charmed as it has been, it has also been peppered with hurt.
We live outside of two very small towns and I recently feel like we don't really belong to either community. I feel much more connected to the countryside, to the neighbors who have helped us in times of need and to the land itself. Being the hermit that I am, I can't imagine having the neighboring communities involved in our business, although there is a degree of that anyway. A small town is a small town is a small town and people assume to know many things.
I have become aquainted with some of the townies, and some of them are good people. Some are curious (like a fellow parent at the school who followed me out to my car to ask if it was true that I was 'that model who lived outside of [town] with three kids'), and some are just downright nosy.
There are a few people in the community who I have been very disappointed with, who I might say have turned me off to both communities. There is a woman who befriended me, or tried to. She happens to be a fellow heart mother, and I would love to only say good things about fellow heart parents, but I learned this lesson from her: people of all walks of life can be selfish and cruel and having children with congenital heart defects does not make us kindred spirits.
I really wanted to connect with this woman and I thought we could work together to bring heart awareness to our mutual community by including all the heart families in the area, of which there are more than just us two. I tried to get her on board, but in the end I found out that her need for attention seemed to outweigh the heart communities' need for awareness. And when I tried to go around her and do what I had proposed on my own, I was ignored outright by the local leaders. I felt a little betrayed and it has left a taste of bitterness in me that has prevented me from trying to be more involved in the local community and even in the heart community.
I am writing about this in an attempt to purge the bitterness. I know in my heart that this woman really has no effect on me or my family and that I am actually much better off without her negativity in my life. I can't help, however, feeling left behind in the wake of that bitterness. We could have stood strong for each other, instead of trying to compete for crappy small town newspaper space.
There is an event this weekend for heart families that will celebrate the lives of our miracles and I thought for a long while that we would attend and be proud of our little Charlie and celebrate the other heart kids and remember the angels. But frankly, now I am just so tired of the rhetoric that I could scream (if I thought the scream would be heard), and I find that I want very little to do with these public displays, no matter how great and good the event. Trying to be a part of it has proved more isolating than when we didn't know anything about heart defects and were just another set of scared parents in the NICU.
I don't want to make it seem as if there aren't any heart families or NICU families that have reached out to us or been very kind to us, because there have been wonderful people who have fed us in the hospital and kept us company and prayed for us in our most desperate hours and even helped keep a roof over our heads. And I have tried to do the same for others I come across in my life who need a friend or a prayer.
But here on the prairie, where I had observed such kindess from my neighbors, I never thought I would be let down by the communities that we have been interacting with for years, or a fellow heart mother, especially when all I asked for was a chance to do good. I can only think that I was exposed to this person so that I could hold a mirror up in front of my face and stop myself from going down the same negative path. I sincerely hope that I am not.
Let down as I am, I still feel sad at the thought of possibly having to leave. It feels like home here and what I really want for my daughter is a home where she can be normal. Terel said it best to me one night, after I realized that the other woman was only out for her own interests. He said, "Awareness is important, sure, but so is our daughter living as normal life as possible. Think of that other kid, and how everyone in town will always see him as 'that heart kid'. That's not what we want for Charlie. We don't want stares and whispers and pity."
And he's right. While I appreciate and admire the good people out there who are raising awareness and supporting the heart community, that path is not the path for our family. Instead of attending the event this weekend, I will keep all of you wonderful heart families in my thoughts and continue to go about our normal lives. If you need something from me, I will surely try my best to give it. In the meantime I want to do a better job of living in the moment in this blissful prairie life. I want to cleanse my thoughts of negativity and appreciate the chance I have been given to be here with my family while it lasts. And then, to move forward without regret.
But as the thought of love entered my brain, a little shot of pain was felt in my gut. We are faced with leaving this place. It's mostly out of our control; this little fantasy life is fleeting and charmed as it has been, it has also been peppered with hurt.
We live outside of two very small towns and I recently feel like we don't really belong to either community. I feel much more connected to the countryside, to the neighbors who have helped us in times of need and to the land itself. Being the hermit that I am, I can't imagine having the neighboring communities involved in our business, although there is a degree of that anyway. A small town is a small town is a small town and people assume to know many things.
I have become aquainted with some of the townies, and some of them are good people. Some are curious (like a fellow parent at the school who followed me out to my car to ask if it was true that I was 'that model who lived outside of [town] with three kids'), and some are just downright nosy.
There are a few people in the community who I have been very disappointed with, who I might say have turned me off to both communities. There is a woman who befriended me, or tried to. She happens to be a fellow heart mother, and I would love to only say good things about fellow heart parents, but I learned this lesson from her: people of all walks of life can be selfish and cruel and having children with congenital heart defects does not make us kindred spirits.
I really wanted to connect with this woman and I thought we could work together to bring heart awareness to our mutual community by including all the heart families in the area, of which there are more than just us two. I tried to get her on board, but in the end I found out that her need for attention seemed to outweigh the heart communities' need for awareness. And when I tried to go around her and do what I had proposed on my own, I was ignored outright by the local leaders. I felt a little betrayed and it has left a taste of bitterness in me that has prevented me from trying to be more involved in the local community and even in the heart community.
I am writing about this in an attempt to purge the bitterness. I know in my heart that this woman really has no effect on me or my family and that I am actually much better off without her negativity in my life. I can't help, however, feeling left behind in the wake of that bitterness. We could have stood strong for each other, instead of trying to compete for crappy small town newspaper space.
There is an event this weekend for heart families that will celebrate the lives of our miracles and I thought for a long while that we would attend and be proud of our little Charlie and celebrate the other heart kids and remember the angels. But frankly, now I am just so tired of the rhetoric that I could scream (if I thought the scream would be heard), and I find that I want very little to do with these public displays, no matter how great and good the event. Trying to be a part of it has proved more isolating than when we didn't know anything about heart defects and were just another set of scared parents in the NICU.
I don't want to make it seem as if there aren't any heart families or NICU families that have reached out to us or been very kind to us, because there have been wonderful people who have fed us in the hospital and kept us company and prayed for us in our most desperate hours and even helped keep a roof over our heads. And I have tried to do the same for others I come across in my life who need a friend or a prayer.
But here on the prairie, where I had observed such kindess from my neighbors, I never thought I would be let down by the communities that we have been interacting with for years, or a fellow heart mother, especially when all I asked for was a chance to do good. I can only think that I was exposed to this person so that I could hold a mirror up in front of my face and stop myself from going down the same negative path. I sincerely hope that I am not.
Let down as I am, I still feel sad at the thought of possibly having to leave. It feels like home here and what I really want for my daughter is a home where she can be normal. Terel said it best to me one night, after I realized that the other woman was only out for her own interests. He said, "Awareness is important, sure, but so is our daughter living as normal life as possible. Think of that other kid, and how everyone in town will always see him as 'that heart kid'. That's not what we want for Charlie. We don't want stares and whispers and pity."
And he's right. While I appreciate and admire the good people out there who are raising awareness and supporting the heart community, that path is not the path for our family. Instead of attending the event this weekend, I will keep all of you wonderful heart families in my thoughts and continue to go about our normal lives. If you need something from me, I will surely try my best to give it. In the meantime I want to do a better job of living in the moment in this blissful prairie life. I want to cleanse my thoughts of negativity and appreciate the chance I have been given to be here with my family while it lasts. And then, to move forward without regret.
Sunday, March 6, 2011
Happy Birthday, Charlie!
Three years ago today, we were on our way to Abbot Northwestern to have our heart baby. Charlie Lynn was born around dinnertime and was whisked right away to Children's NICU across the street. We knew ahead of time about her heart, but she looked perfect to us anyway.
She didn't want her picture taken right away, but let me tell you how perfect she was. She had a perfect round little head. She had a perfect little nose. Her cheeks were sweet and soft. She had ten perfect little fingers and ten perfect little toes.
Charlie has been through so much in her life, she is the strongest little one I know. Her imperfect little heart was made stronger by her will. She has always been a happy, thoughtful child, even in the worst of times.
When I look into her eyes, I know that she is wise beyond her time.
She lights up this family with her big, big personality. She loves us and we love her very, very much.
Happy Third Birthday Charlie Lynn. May it be one of many, many happy days we spend together.
You are my sunshine.
She didn't want her picture taken right away, but let me tell you how perfect she was. She had a perfect round little head. She had a perfect little nose. Her cheeks were sweet and soft. She had ten perfect little fingers and ten perfect little toes.
Charlie has been through so much in her life, she is the strongest little one I know. Her imperfect little heart was made stronger by her will. She has always been a happy, thoughtful child, even in the worst of times.
When I look into her eyes, I know that she is wise beyond her time.
She lights up this family with her big, big personality. She loves us and we love her very, very much.
Happy Third Birthday Charlie Lynn. May it be one of many, many happy days we spend together.
You are my sunshine.
Friday, February 11, 2011
Heart Week, Heart Life
It's come again, the third Heart week of my darling's life. Congenital Heart Defect Awareness Week, that is. I'm already tired of typing it. Some of you may not know that it is Heart week; some of you may think it's simply the lead-up to Valentine's Day: sales and cheesy gifts and dead flowers and big paper hearts hanging everywhere. I've never been a fan of V Day, so while I didn't leap at the chance to 'celebrate' CHDs, I embraced the opportunity to purposefully ignore the holiday for a more noble cause. Or at least to recognize Charlie's heart battle. We try to do that in our own little way every year, so we can spend the rest of the year being as normal as possible.
This year has gained some significance in our lives because we learned that another close family member has a heart problem, this time on Terel's side of the family. While I don't yet know the details of the family member's heart problem and am unsure if it is a congenital problem or an acquired problem, it gives me pause to think of the genetic odds stacked against us. My sister was also born with congenital heart disease and died as an infant. Charlie is special and we would not trade her for anything, but the facts we now know about heart defects and our family history may have made us choose to forgo having another child.
While I believe that I have fulfilled the quota for ethical child-bearing (one replacement for each parent), Terel and I went into our relationship thinking there'd be a couple more children (I mean, I have a brother who probably won't be having children at all, so I get to replace him too, right? And his girlfriend?). I think we're both a little sad, but we can't ignore the risk.
According to the American Heart Association, the chances of us having another child with a heart defect are as high as 50%. That's quite the gamble.
I am in every way satisfied by the children I already have and consider myself blessed to have them. I know that circumstances change and minds change and that some of the wishes we made must adapt to the needs of the present. I actually feel almost Zen about it, living in the now with my family. But despite the calm-eastern-springing-from-nothing vibe I have going on, there is a small part of me that is infinitely Western; a selfish, capitalistic, bigger is better part of me who can't give away a pair of pink booties and already has the next baby named.
While West Me tries to duel with east me, east me smiles and accepts it. East me is all about enjoying the now. East me teaches math to the boys while eating pretend pear soup with Charlie, who looks ravishing in red. East me has plenty of thoughts about congenital heart defects. East me thinks those thoughts and then lets go of them. And if east me discovers someday that she is pregnant, she'll send West Me good healthy heart transmissions.
Please, whether you're an east you or a West You or both, learn the facts about your heart and know the risk. Heart defects are the most common birth defect and the number one killer of infants with birth defects. Awareness saves lives.
"So I guess we're not having any more kids."
This year has gained some significance in our lives because we learned that another close family member has a heart problem, this time on Terel's side of the family. While I don't yet know the details of the family member's heart problem and am unsure if it is a congenital problem or an acquired problem, it gives me pause to think of the genetic odds stacked against us. My sister was also born with congenital heart disease and died as an infant. Charlie is special and we would not trade her for anything, but the facts we now know about heart defects and our family history may have made us choose to forgo having another child.
While I believe that I have fulfilled the quota for ethical child-bearing (one replacement for each parent), Terel and I went into our relationship thinking there'd be a couple more children (I mean, I have a brother who probably won't be having children at all, so I get to replace him too, right? And his girlfriend?). I think we're both a little sad, but we can't ignore the risk.
According to the American Heart Association, the chances of us having another child with a heart defect are as high as 50%. That's quite the gamble.
I am in every way satisfied by the children I already have and consider myself blessed to have them. I know that circumstances change and minds change and that some of the wishes we made must adapt to the needs of the present. I actually feel almost Zen about it, living in the now with my family. But despite the calm-eastern-springing-from-nothing vibe I have going on, there is a small part of me that is infinitely Western; a selfish, capitalistic, bigger is better part of me who can't give away a pair of pink booties and already has the next baby named.
While West Me tries to duel with east me, east me smiles and accepts it. East me is all about enjoying the now. East me teaches math to the boys while eating pretend pear soup with Charlie, who looks ravishing in red. East me has plenty of thoughts about congenital heart defects. East me thinks those thoughts and then lets go of them. And if east me discovers someday that she is pregnant, she'll send West Me good healthy heart transmissions.
Mom & Charlie wearing Red for Heart Awareness
Please, whether you're an east you or a West You or both, learn the facts about your heart and know the risk. Heart defects are the most common birth defect and the number one killer of infants with birth defects. Awareness saves lives.
Saturday, January 29, 2011
Happy Birthday, Joseph!
Seven years ago today, my little Joey came into the world. It was two in the morning, just a couple hours past his father's birthday. He was a quick delivery and an instantly happy little boy. He has a heart that encompasses the world, with love for everyone he meets.
Joe has always been my little sweetie. He is the best mommy's boy a girl could hope for. He's always quick with a hug and a compliment. If I'm having a bad day, he'll tell me that my hair is beautiful or that my outfit is "Very pretty today, Mommy!" Even if I'm not having a bad day, he has something nice to say.
He is sunshine in my life. His golden curls have made many hearts melt. His kindness floats around him like a bright aura.
He is fun and funny. He loves to make people laugh. His big blue eyes will engage you in the many stories and jokes he loves to tell.
He is always eager and willing to share in the joy of others.
Joey, you will always be my sweetie! Happy seventh birthday, my little love.
Thursday, January 27, 2011
Let's Stay Home
When I announced to my friends and family that I was going to be homeschooling, I'm pretty sure most of them assumed that I was crazy or that my anti-social personality had finally broken free and was going to be locking the doors on the house from the inside.
I too, wondered if I was crazy. I wondered if I could do it. I wondered if my kids would hate me. I wondered if we would all sit around the table and stare at each other, a little mystified and more than a little bored. Getting started was half the battle. Seriously, I had more anxiety during the weeks before we started than I had experienced in a long time.
To ease the anxiety, I took a step back and broke it down. I started with social studies and the language arts because they were easy. After a while, I slipped in math and after an even longer while, science. Minnesota makes it pretty easy to educate your child at home. It's required that children be taught reading, writing, literature, fine arts, math, science, history, geography, government, health, and physical education. I sprinkle in the arts, health and phy ed weekly around the other subjects and we go from there. There are no number of required days and I merely have to report once a year that it is my intention to educate them at home and subject them to a nationally recognized standardized test.
I have to admit that there have been days of mystification and days of boredom, but the great thing about it is that we can stop at anytime and take a break. A pee break. A lunch break. A fun break. A mental health break. Any break. Any time.
Anti-social me didn't put any locks on the doors. Instead, we joined some groups and were able to meet up with other homeschoolers once a week for 'Gym Time'. Hit the library, hit the gym and socialize. Finding others to relate to really helped, although anti-social me sometimes doesn't feel like bonding with the other mothers. I was quite relieved, however, to find that the other mothers were not foaming at the mouth with religion and seemed to have had some of the same experiences I have had.
The hardest thing for me to deal with was the local school district. In Minnesota, homeschoolers have the right to special education services and I didn't want to take resources away from the boys, resources like speech and occupational therapy. However, no one at the school knew that the law provided such services and I was promptly denied by the principal. After months of coming up short on this front, I contacted PACER. I also got in touch with the special ed contact from the Minnesota Homeschooler's Alliance and the director of the regional special ed services, who all informed me that I wasn't delusional, as the principal was intimating by refusing to even reply to my requests for services. In fact, as the PACER representative told me, I was able to act as the principal myself and shouldn't pay the man any mind. Finally, in December, I was able to get Ethan going to speech once a month (I began asking for services in June). Joe, however, is still waiting on services...pending a return phone call from the person in charge of his case. It's almost more effort than it's worth, honestly, but I am a stubborn woman.
I still wonder from time to time if I am doing enough, if the kids are getting thoroughly educated, if I am going to turn them into little weirdos (too late, is my thought as I type this, but that's okay...it's genetic). In my humble opinion, my kids need one on one attention and a break from the stress that public school puts on a spectrum-y kid. I don't think the local school district even knows what that means. Some of the teachers I've met so far certainly have no idea. Some of them do. Bless the ones that do, and the others...well, we'll let one of those religious mothers pray for them. I feel so much more connected with my children's education than I did when they attended public school. It's not for everyone, but it is for us.
I get a little sad when I think there might not be that first-day-of-kindergarten moment with Charlie, but that feeling dissipates when she gets out her little notebook, pulls up a chair, and tries to write letters at the table with us. Or when she gathers around for story time and wants to put words up on the word wall. Or when I hear her trying to count or reciting her ABCDJF's.
Education is essential, no matter where it takes place. In our lives, the place is home and the place is the world.
I too, wondered if I was crazy. I wondered if I could do it. I wondered if my kids would hate me. I wondered if we would all sit around the table and stare at each other, a little mystified and more than a little bored. Getting started was half the battle. Seriously, I had more anxiety during the weeks before we started than I had experienced in a long time.
To ease the anxiety, I took a step back and broke it down. I started with social studies and the language arts because they were easy. After a while, I slipped in math and after an even longer while, science. Minnesota makes it pretty easy to educate your child at home. It's required that children be taught reading, writing, literature, fine arts, math, science, history, geography, government, health, and physical education. I sprinkle in the arts, health and phy ed weekly around the other subjects and we go from there. There are no number of required days and I merely have to report once a year that it is my intention to educate them at home and subject them to a nationally recognized standardized test.
I have to admit that there have been days of mystification and days of boredom, but the great thing about it is that we can stop at anytime and take a break. A pee break. A lunch break. A fun break. A mental health break. Any break. Any time.
Anti-social me didn't put any locks on the doors. Instead, we joined some groups and were able to meet up with other homeschoolers once a week for 'Gym Time'. Hit the library, hit the gym and socialize. Finding others to relate to really helped, although anti-social me sometimes doesn't feel like bonding with the other mothers. I was quite relieved, however, to find that the other mothers were not foaming at the mouth with religion and seemed to have had some of the same experiences I have had.
The hardest thing for me to deal with was the local school district. In Minnesota, homeschoolers have the right to special education services and I didn't want to take resources away from the boys, resources like speech and occupational therapy. However, no one at the school knew that the law provided such services and I was promptly denied by the principal. After months of coming up short on this front, I contacted PACER. I also got in touch with the special ed contact from the Minnesota Homeschooler's Alliance and the director of the regional special ed services, who all informed me that I wasn't delusional, as the principal was intimating by refusing to even reply to my requests for services. In fact, as the PACER representative told me, I was able to act as the principal myself and shouldn't pay the man any mind. Finally, in December, I was able to get Ethan going to speech once a month (I began asking for services in June). Joe, however, is still waiting on services...pending a return phone call from the person in charge of his case. It's almost more effort than it's worth, honestly, but I am a stubborn woman.
I still wonder from time to time if I am doing enough, if the kids are getting thoroughly educated, if I am going to turn them into little weirdos (too late, is my thought as I type this, but that's okay...it's genetic). In my humble opinion, my kids need one on one attention and a break from the stress that public school puts on a spectrum-y kid. I don't think the local school district even knows what that means. Some of the teachers I've met so far certainly have no idea. Some of them do. Bless the ones that do, and the others...well, we'll let one of those religious mothers pray for them. I feel so much more connected with my children's education than I did when they attended public school. It's not for everyone, but it is for us.
I get a little sad when I think there might not be that first-day-of-kindergarten moment with Charlie, but that feeling dissipates when she gets out her little notebook, pulls up a chair, and tries to write letters at the table with us. Or when she gathers around for story time and wants to put words up on the word wall. Or when I hear her trying to count or reciting her ABCDJF's.
Education is essential, no matter where it takes place. In our lives, the place is home and the place is the world.
Friday, December 31, 2010
Moments, New and Old
Well, friends...Christmas is over and so is 2010.
I can't say that this past year has been turbulence free, but I wish to find peace in it. No regrets, only lessons for the coming moments.
There are some good things I can look back on. How about healthy children? Only one bout of sickness in the last year for miss Charlie Lynn when she had croup/bronchitis and it was short lived. At her recent cardiologist appointment, her O2 sat (the amount of oxygen circulating in her blood) was at 100%! A major milestone in her life. Another good thing was discovering I did have what it takes to educate my kids. Homeschooling was always a dream of mine and to have realized it makes me feel wonderful. I always felt pigeon-holed by the school district and my square pegged children didn't seem to fit too well into their round little classrooms. I remember that the Doctor who diagnosed Ethan with ASD telling me that his education was the most important thing in his little life and that I could not, no matter what, let him slip through the cracks. I feel that choosing to educate him at home helped fill in at least 1000 of those cracks. I am more than a little afraid that he will follow in the footsteps of his dear mother and, realizing what a joke public school can be, create his own cracks to slip through. All I wish of him (and the other babies) is to follow his mind and his interests into a contented life.
If you know me at all, you know that I read quite a bit. My husband is quite jealous of my love affair with science fiction and I must admit I would probably give him up if it came down to a choice between him and my Dune novels (But I am assured that if it was between me and his hand planes, I'd be on the first bus out of town). Anyway, I've been doing a lot of reading lately in articles about congenital heart defects, searching for information relevant to Charlie's defect. It's kind of a difficult search, as she has no one syndrome or defect, but a bunch of defects that complicate (and even help) each other. So I can only find information that sort-of applies and I have to keep my mind open to her whole set of defects so that I can visualize what's going on inside of her little chest.
Terel asks me why I put myself through the mental and emotional anguish of reading case after case of articles on the subject, but I can't imagine not doing it. Just like how I sought information on Autism (and still do), it consumes me. I feel like I need to know everything about the subjects to understand my children and the role I play in their lives, beyond mother, of course.
One article I read recently brought me to tears while reading it. It features a woman, Jeni, with Hypoplastic Left Heart Syndrome and is found here. While it doesn't feature Charlie's defect, HLHS is sort of similar and Charlie will most likely face some of the same challenges that Jeni faces. It's hard for me to imagine those challenges and how they will affect my pretty little daughter who seems to have such a large spark for life.
At the same time that I am tearfully grateful to read news stories featuring CHD survivors, I feel frustrated because they seem to be all about kids with HLHS. And then I feel guilty for feeling frustrated. The HLHS kids need articles published about them as much as any other heart baby. Awareness for HLHS is also much needed awareness for CHDs in general. But sometimes I feel lost in the world where parents proclaim their little ones to be 'warriors' against a specific syndrome with a specific name. I feel guilty for being briefly jealous of these kids' parents for having at least one simple thing in their complex lives. I realize it's a silly thing to feel and perhaps I am writing it here to show myself that it is a slight thing, a thing to let go of. But I am hoping the mothers and fathers and others who have experienced the roller coaster of emotion that goes along with having a chronically ill child will understand these feelings and perhaps identify with them. I know that feeling isolated is, perhaps ironically, a common theme in the lives of those touched by disease, and if nothing else I hope my candidness will help to alleviate another parent's guilt or loneliness for at least a moment or two.
I struggle to find my part in making the world a better place and I hope to find it in helping other families like my own. Whether it be heart defects, autism, or just helping other young families meet their needs, I would like to fill my new year with kindness, health and peace. And of course, laughter, friends, and happiness. There is one more article I'd like to share, one that might bring a little light into the oftentimes dark subject of CHDs and it can be read here. Let's hope the technology continues to develop and someday the most common birth defect will become the least common.
Let's step into 2011 one moment at a time.
I can't say that this past year has been turbulence free, but I wish to find peace in it. No regrets, only lessons for the coming moments.
There are some good things I can look back on. How about healthy children? Only one bout of sickness in the last year for miss Charlie Lynn when she had croup/bronchitis and it was short lived. At her recent cardiologist appointment, her O2 sat (the amount of oxygen circulating in her blood) was at 100%! A major milestone in her life. Another good thing was discovering I did have what it takes to educate my kids. Homeschooling was always a dream of mine and to have realized it makes me feel wonderful. I always felt pigeon-holed by the school district and my square pegged children didn't seem to fit too well into their round little classrooms. I remember that the Doctor who diagnosed Ethan with ASD telling me that his education was the most important thing in his little life and that I could not, no matter what, let him slip through the cracks. I feel that choosing to educate him at home helped fill in at least 1000 of those cracks. I am more than a little afraid that he will follow in the footsteps of his dear mother and, realizing what a joke public school can be, create his own cracks to slip through. All I wish of him (and the other babies) is to follow his mind and his interests into a contented life.
If you know me at all, you know that I read quite a bit. My husband is quite jealous of my love affair with science fiction and I must admit I would probably give him up if it came down to a choice between him and my Dune novels (But I am assured that if it was between me and his hand planes, I'd be on the first bus out of town). Anyway, I've been doing a lot of reading lately in articles about congenital heart defects, searching for information relevant to Charlie's defect. It's kind of a difficult search, as she has no one syndrome or defect, but a bunch of defects that complicate (and even help) each other. So I can only find information that sort-of applies and I have to keep my mind open to her whole set of defects so that I can visualize what's going on inside of her little chest.
Terel asks me why I put myself through the mental and emotional anguish of reading case after case of articles on the subject, but I can't imagine not doing it. Just like how I sought information on Autism (and still do), it consumes me. I feel like I need to know everything about the subjects to understand my children and the role I play in their lives, beyond mother, of course.
One article I read recently brought me to tears while reading it. It features a woman, Jeni, with Hypoplastic Left Heart Syndrome and is found here. While it doesn't feature Charlie's defect, HLHS is sort of similar and Charlie will most likely face some of the same challenges that Jeni faces. It's hard for me to imagine those challenges and how they will affect my pretty little daughter who seems to have such a large spark for life.
At the same time that I am tearfully grateful to read news stories featuring CHD survivors, I feel frustrated because they seem to be all about kids with HLHS. And then I feel guilty for feeling frustrated. The HLHS kids need articles published about them as much as any other heart baby. Awareness for HLHS is also much needed awareness for CHDs in general. But sometimes I feel lost in the world where parents proclaim their little ones to be 'warriors' against a specific syndrome with a specific name. I feel guilty for being briefly jealous of these kids' parents for having at least one simple thing in their complex lives. I realize it's a silly thing to feel and perhaps I am writing it here to show myself that it is a slight thing, a thing to let go of. But I am hoping the mothers and fathers and others who have experienced the roller coaster of emotion that goes along with having a chronically ill child will understand these feelings and perhaps identify with them. I know that feeling isolated is, perhaps ironically, a common theme in the lives of those touched by disease, and if nothing else I hope my candidness will help to alleviate another parent's guilt or loneliness for at least a moment or two.
I struggle to find my part in making the world a better place and I hope to find it in helping other families like my own. Whether it be heart defects, autism, or just helping other young families meet their needs, I would like to fill my new year with kindness, health and peace. And of course, laughter, friends, and happiness. There is one more article I'd like to share, one that might bring a little light into the oftentimes dark subject of CHDs and it can be read here. Let's hope the technology continues to develop and someday the most common birth defect will become the least common.
Let's step into 2011 one moment at a time.
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