Sometimes, if only for a minute, I forget that I am a heart mom.
Then reality wakes me up, and it all comes flooding back.
Sometimes, I get downright angry. Why does my experience with motherhood have to include things like syringes and dosing information, sutures and heart function? I see people's Facebook posts in which their children do things like ride their bike, write their name, or tie their shoes for the first time-at the age it's considered developmentally "normal" to do so. I hear someone's three-year-old speaking full, clear sentences and watch their six-year-old pick up a chapter book and go to town. I get mad (and let's be honest here-I get really sad, too) that things that "should" be simple for any child are not simple for either of mine. I fume at their struggles, curse the medications that make my kids throw up or not want to eat, and seriously consider hurling my home blood pressure monitor and stethoscope across the room.
People tell me they don't know how I do it. Well, join the club. I don't know how I do it either. Perhaps the easiest way to respond to that is that #1-I really don't have a choice and #2-I guess I don't know anything different. Maybe that makes it a bit easier. I don't know, because both of my kids have walked eerily similar paths that don't even come close to what I once imagined parenthood entailed. Maybe that question should be posed to people like my friend C, whose heart "baby" is not her first child. Or her second. I think that woman deserves a medal. Raising five children, on her own, the youngest of whom is a heart kiddo. How does she do it? I imagine, though, that her answer would be very similar to what I have said more than once to that statement: What else can you do but pick yourself up and go on?
So when I start having a pity party at the sink as I am washing the latest batch of syringes, I try my best to remember this: my children are the lucky ones. So they aren't potty trained. So what. So they have to take meds every day. Yeah, that sucks. But you know what? They're here. I know for a fact that there are many heart parents that don't get to hug their children, or read them a bedtime story. Heart problems kill more children every year than all cancers combined. We have stared the beast in the face and managed to come out the other side-at the moment. Something that cannot be said for every family that's walked this road.
Come to think of it, I love washing syringes.
Tuesday, August 21, 2012
Wednesday, July 18, 2012
Love thy neighbor...
I am a baptized Catholic. I believe in God, and pray to Him frequently. I think God and I have gotten to a much better place in the past few years, even though my faith has been shaken more than once.
But does being a Catholic mean I have to be judgmental? I don't think so.
You see, I am a gay rights/gay marriage supporter. There are several people in my life that I love who are gay, and they are wonderful people who just want to be able to have a committed relationship in the eyes of the law. For their children to be able to say "YES, my parents are married."
It's a big deal.
I know this could potentially cause debates, and quite possibly make people feel resentful of me, but guess what? My blog, my thoughts. And I could honestly care less what others say on this subject, cause to me no matter what people say to try to convince me otherwise, I will stay true to what I believe.
Jesus died for ALL of us. He loves ALL of us. Heterosexual or homosexual, the Lord made you that way. Period. He also gave us the ability to think. To make choices. Hate is a choice. Judgment? Also a choice. Who you love? Not so much. (If you could choose who you did or didn't have feelings for, we would all have a lot less baggage. I mean, c'mon, who hasn't loved the totally wrong person at some point in their life?)
I hope to raise my children within an environment of love and acceptance. I think the most important lesson that I could ever teach them is to love one another. To be blind to color, religion, sexual preference, or what the world says your IQ is. Why do we all have to be classified into little groups like Lego sets? Together, we can be a stronger world. But we have to do it as one.
I'm not naive. I know that the citizens of Earth (or even just America, for that matter) will never join hands and be unified-that whole "We Are The World" mentality just isn't gonna happen. In my house, though, we will be about love. Jesus said "Come as you are" and that's what it's about in my home.
Who am I to pass judgment? To me, that's a direct insult to the work of the Lord. He made us all in just the way He wanted-and I, personally, am not about to say "You know what? You're wrong. This guy (or girl)? Not worthy of my love. Or yours."
God's welcome mat is always out. Why shouldn't mine be, too?
But does being a Catholic mean I have to be judgmental? I don't think so.
You see, I am a gay rights/gay marriage supporter. There are several people in my life that I love who are gay, and they are wonderful people who just want to be able to have a committed relationship in the eyes of the law. For their children to be able to say "YES, my parents are married."
It's a big deal.
I know this could potentially cause debates, and quite possibly make people feel resentful of me, but guess what? My blog, my thoughts. And I could honestly care less what others say on this subject, cause to me no matter what people say to try to convince me otherwise, I will stay true to what I believe.
Jesus died for ALL of us. He loves ALL of us. Heterosexual or homosexual, the Lord made you that way. Period. He also gave us the ability to think. To make choices. Hate is a choice. Judgment? Also a choice. Who you love? Not so much. (If you could choose who you did or didn't have feelings for, we would all have a lot less baggage. I mean, c'mon, who hasn't loved the totally wrong person at some point in their life?)
I hope to raise my children within an environment of love and acceptance. I think the most important lesson that I could ever teach them is to love one another. To be blind to color, religion, sexual preference, or what the world says your IQ is. Why do we all have to be classified into little groups like Lego sets? Together, we can be a stronger world. But we have to do it as one.
I'm not naive. I know that the citizens of Earth (or even just America, for that matter) will never join hands and be unified-that whole "We Are The World" mentality just isn't gonna happen. In my house, though, we will be about love. Jesus said "Come as you are" and that's what it's about in my home.
Who am I to pass judgment? To me, that's a direct insult to the work of the Lord. He made us all in just the way He wanted-and I, personally, am not about to say "You know what? You're wrong. This guy (or girl)? Not worthy of my love. Or yours."
God's welcome mat is always out. Why shouldn't mine be, too?
Sunday, July 1, 2012
Neighbors
You know, there used to be a time when neighbors knew each other. Had cookouts together, chatted over the back fence every day, and fed half the neighborhood with each meal. Now neighbors don't even know each other at all. An entire town would come together to help people raise a barn, side a house, or build a deck. It was all about community, about loving thy neighbor as thyself. About reaching out a hand to those that needed it, without expecting a thing in return. There wasn't the "me me me" mindset that we see so often today.
The recent healthcare reform debate has brought this mentality into sharp focus. I cannot even tell you the number of times I have heard the phrase "Why should I have to pay for someone else?" in the past month or so. It's true with the healthcare reform, with taxes, with school levies. "Why me?" Well, why not you? Why not reach out to those that are a little less fortunate than you, in the hopes that we can make America a better place? Why don't more people volunteer? Donate blood? Vote "yes" in school levies to help with the budget?
Because the common way of thinking is "Well why should I have to do it?" Lord knows when you yourself might need a meal provided for you, or health insurance that's guaranteed to cover your sick relative who could never afford his medication or chemotherapy or surgery or what have you without it. People who'd literally die without insurance. We are not promised tomorrow. We do not know what's just around the bend, and it could just be you that needs those pints of blood. It could be YOUR kids in a school that has to use old textbooks because yet another levy didn't pass.
The people of America need to come together. We have heard it all our lives: "UNITED we stand, divided we FALL." Yet so many don't live by this very simple principle. Rich people are not guaranteed riches for life. Insurance may run out. You could lose your job. Get cancer. Need an operation. Then you will need someone. Perhaps many someones. It's unfortunate that so many do not give without thinking about what they will get in return. We need to live with a community worldview. Your neighbor may not have the same color skin or even speak the same language, but at the end of the day we are all human beings. We deserve to have the love and support of our fellow neighbors, even if we don't need it right at that moment.
We shouldn't have to choose between groceries and medication.
I support the healthcare reform bill. It's not perfect. No bill is. But it will help so many many people that need it the very most. Including my two beautiful little ladies with zippers on their chests.
Complain about America all you want. Gripe about the president, and how he has "done nothing"-a debate I will not even try to opine on here, because it would take days. If you don't like it here in America, well, you know how to leave. Maybe you will find better neighbors somewhere else. But only if you learn to be a better neighbor first.
The recent healthcare reform debate has brought this mentality into sharp focus. I cannot even tell you the number of times I have heard the phrase "Why should I have to pay for someone else?" in the past month or so. It's true with the healthcare reform, with taxes, with school levies. "Why me?" Well, why not you? Why not reach out to those that are a little less fortunate than you, in the hopes that we can make America a better place? Why don't more people volunteer? Donate blood? Vote "yes" in school levies to help with the budget?
Because the common way of thinking is "Well why should I have to do it?" Lord knows when you yourself might need a meal provided for you, or health insurance that's guaranteed to cover your sick relative who could never afford his medication or chemotherapy or surgery or what have you without it. People who'd literally die without insurance. We are not promised tomorrow. We do not know what's just around the bend, and it could just be you that needs those pints of blood. It could be YOUR kids in a school that has to use old textbooks because yet another levy didn't pass.
The people of America need to come together. We have heard it all our lives: "UNITED we stand, divided we FALL." Yet so many don't live by this very simple principle. Rich people are not guaranteed riches for life. Insurance may run out. You could lose your job. Get cancer. Need an operation. Then you will need someone. Perhaps many someones. It's unfortunate that so many do not give without thinking about what they will get in return. We need to live with a community worldview. Your neighbor may not have the same color skin or even speak the same language, but at the end of the day we are all human beings. We deserve to have the love and support of our fellow neighbors, even if we don't need it right at that moment.
We shouldn't have to choose between groceries and medication.
I support the healthcare reform bill. It's not perfect. No bill is. But it will help so many many people that need it the very most. Including my two beautiful little ladies with zippers on their chests.
Complain about America all you want. Gripe about the president, and how he has "done nothing"-a debate I will not even try to opine on here, because it would take days. If you don't like it here in America, well, you know how to leave. Maybe you will find better neighbors somewhere else. But only if you learn to be a better neighbor first.
Saturday, June 16, 2012
Testimonial
I became a mother knowing that it was never going to be a walk in the park. That I would have moments that would make me want to scream, cry, or run away. Maybe even throw up. I knew I would have to "put on my big girl pants" and deal with it, just as my mom and many others have for all of time. That doesn't mean it was always easy, nor does it mean that I always dealt with things so well.
For instance, when Madi was just a little person, (well, littler than she is now) when she would throw up I could not handle it. Could. Not. So Noel was the one that was on puke patrol while I was sitting in another room trying not to lose my own lunch. Luckily, in those first years, she didn't get sick very often and I rarely had to deal with those types of things.
Then came the big heart stuff.. the strokes, the ambulance rides, the endless tests and blood draws. The cardiac lingo kind of slipped under the rug for awhile, and I feel as though the only reason I survived those initial days after Madi was diagnosed with dilated cardiomyopathy was because I was totally and completely numb. Shut down. I honestly can't recall most of those early days, and that's just fine by me.
When Madi had her transplant, I cried rivers of tears. In her room when we got to see her for the first time post-surgery, I almost passed out.
Then, Sydney got diagnosed. And when the doctor spoke the words "Sydney's echo is not normal", I left the room. It was the only thing I could do. I went into the bathroom and laid there, angry at the world (and God), and overcome with nausea and dizziness.
I used to think that I was a big sissy when it came to motherhood. When people would say that I was strong, I brushed it off like it wasn't a big deal. Because, really, what choice did I have? It's not like I would have ever even thought to give up and walk away-not when I knew that my kids had it in them to fight. To live and be happy. When you are a parent, you bear the burdens asked of you for your child. You fight demons, slay dragons, ask questions, give medicine, and chase monsters from the closets. Isn't that what we all do?
But today I was told something that made me think twice about my assumptions. Today, Sydney's cardiologist-a world class cardiologist in the top 1% of his field in the nation-said to me "I think you will have a special place in Heaven; probably at the right hand of the big man Himself." He then turned to the intern that was in the room and said "She just keeps bubbling right along!" and nodded to me. In that moment, I realized something. I will try not to brush off those comments anymore. I have earned every emotional battle scar I have.
I AM strong.
I AM a good mom.
I CAN do this.
I WILL do this.
Today, I left Sydney's appointment with a renewed belief in myself. All it takes are some kind words to change a person's day around, and this afternoon, I was in need of a pick-me-up.
Honestly, Dr. Driscoll's words were probably the nicest thing someone's said to me in a very long time, if ever. They couldn't have come at a better time. It's like God was speaking to me through the doctor, and telling me that even though I have my moments, I've totally got this. Talk about empowering.
For instance, when Madi was just a little person, (well, littler than she is now) when she would throw up I could not handle it. Could. Not. So Noel was the one that was on puke patrol while I was sitting in another room trying not to lose my own lunch. Luckily, in those first years, she didn't get sick very often and I rarely had to deal with those types of things.
Then came the big heart stuff.. the strokes, the ambulance rides, the endless tests and blood draws. The cardiac lingo kind of slipped under the rug for awhile, and I feel as though the only reason I survived those initial days after Madi was diagnosed with dilated cardiomyopathy was because I was totally and completely numb. Shut down. I honestly can't recall most of those early days, and that's just fine by me.
When Madi had her transplant, I cried rivers of tears. In her room when we got to see her for the first time post-surgery, I almost passed out.
Then, Sydney got diagnosed. And when the doctor spoke the words "Sydney's echo is not normal", I left the room. It was the only thing I could do. I went into the bathroom and laid there, angry at the world (and God), and overcome with nausea and dizziness.
I used to think that I was a big sissy when it came to motherhood. When people would say that I was strong, I brushed it off like it wasn't a big deal. Because, really, what choice did I have? It's not like I would have ever even thought to give up and walk away-not when I knew that my kids had it in them to fight. To live and be happy. When you are a parent, you bear the burdens asked of you for your child. You fight demons, slay dragons, ask questions, give medicine, and chase monsters from the closets. Isn't that what we all do?
But today I was told something that made me think twice about my assumptions. Today, Sydney's cardiologist-a world class cardiologist in the top 1% of his field in the nation-said to me "I think you will have a special place in Heaven; probably at the right hand of the big man Himself." He then turned to the intern that was in the room and said "She just keeps bubbling right along!" and nodded to me. In that moment, I realized something. I will try not to brush off those comments anymore. I have earned every emotional battle scar I have.
I AM strong.
I AM a good mom.
I CAN do this.
I WILL do this.
Today, I left Sydney's appointment with a renewed belief in myself. All it takes are some kind words to change a person's day around, and this afternoon, I was in need of a pick-me-up.
Honestly, Dr. Driscoll's words were probably the nicest thing someone's said to me in a very long time, if ever. They couldn't have come at a better time. It's like God was speaking to me through the doctor, and telling me that even though I have my moments, I've totally got this. Talk about empowering.
Wednesday, June 13, 2012
Daddies & Daughters
It's been said many a time that a father is a daughter's very first love. I myself have a great dad, and though we have had our moments, I can truly say that there really is a special bond between daddies and their daughters.
I don't know why it is, but sometimes dads are just easier to get along with. (Though you can bet your butt that when I am sick, to this day, I still want my mom!) In my case, I think it had something to do with the roles in our family. My dad worked outside of the house, oftentimes putting in 60 hours a week or more. My mom was the consummate stay at home mom who did it all-and the primary disciplinarian. I think that made the scales tip a little more in Dad's favor-he got to be the "fun one" a lot more than Mom did. (Sorry, Mom!)
I see it more and more with my own daughters. When I am gone for the day and my husband is home with his girls, anything goes. It can be two in the afternoon, and they are still in their pjs, hair untouched by any comb or barrette, bellies full of Pop-Tarts, Funyuns, and cookies. Daddy is the one that turns on the Wii and plays RockBand, to their delight. (He says it's for them, but we all know he really wants to play too.) He can also be easily swayed into getting Culver's for dinner, followed up with a yummy ice cream creation from ColdStone.
I would be wrong if I said that this wasn't head-shakingly frustrating at times. I find myself thinking 'Hey, I get you dressed and do your hair and find educational activities and try to feed you balanced meals and, and, and..' But the girls love every minute of it, of course. And I do think that Madi, at the ripe old age of 6, has started to learn the fine art of getting her way, batting her super-long eyelashes at her daddy. Which is why you will find Noel playing tea party, dressing Barbies, and painting fingernails. (He's actually quite good at that!) He is learning to do girls' hair, even if it does take him what seems like an eon to put Madi's hair in a ponytail. He knows the names of all the Disney princesses, and can probably sing along with any of their movies. Noel's world is one of sparkly pink things, clouds of glitter, and plastic high heels.
They say that when a girl marries, she looks to find someone that is like her dad. My dad and Noel are a lot alike, but in many ways are very different. I don't think my dad would have been caught dead in a tutu, something I have seen Noel do more than once. (Now, if his granddaughter asked him to, that might be a different story.) I would never have asked him to paint my nails-he wouldn't have known what to do with himself. We did, however, sculpt many an awesome Play-Doh creation together, and don't even get me started on our puzzle-building skills.
My dad had two sons after I was born, so he got his fair share of all things boy. Noel, though, won't get that chance, as our two daughters are it for us. Luckily, Madi & Sydney also enjoy baseball, monster trucks, rock music, dirt, and all the stereotypical boy things too, even though they prefer frills and lace.
Good thing Noel wears it well.
The father of a daughter is nothing but a high-class hostage. A father turns a stony face to his sons, berates them, shakes his antlers, paws the ground, snorts, runs them off into the underbrush, but when his daughter puts her arm over his shoulder and says, "Daddy, I need to ask you something," he is a pat of butter in a hot frying pan.
~ Garrison Keillor
I don't know why it is, but sometimes dads are just easier to get along with. (Though you can bet your butt that when I am sick, to this day, I still want my mom!) In my case, I think it had something to do with the roles in our family. My dad worked outside of the house, oftentimes putting in 60 hours a week or more. My mom was the consummate stay at home mom who did it all-and the primary disciplinarian. I think that made the scales tip a little more in Dad's favor-he got to be the "fun one" a lot more than Mom did. (Sorry, Mom!)
I see it more and more with my own daughters. When I am gone for the day and my husband is home with his girls, anything goes. It can be two in the afternoon, and they are still in their pjs, hair untouched by any comb or barrette, bellies full of Pop-Tarts, Funyuns, and cookies. Daddy is the one that turns on the Wii and plays RockBand, to their delight. (He says it's for them, but we all know he really wants to play too.) He can also be easily swayed into getting Culver's for dinner, followed up with a yummy ice cream creation from ColdStone.
I would be wrong if I said that this wasn't head-shakingly frustrating at times. I find myself thinking 'Hey, I get you dressed and do your hair and find educational activities and try to feed you balanced meals and, and, and..' But the girls love every minute of it, of course. And I do think that Madi, at the ripe old age of 6, has started to learn the fine art of getting her way, batting her super-long eyelashes at her daddy. Which is why you will find Noel playing tea party, dressing Barbies, and painting fingernails. (He's actually quite good at that!) He is learning to do girls' hair, even if it does take him what seems like an eon to put Madi's hair in a ponytail. He knows the names of all the Disney princesses, and can probably sing along with any of their movies. Noel's world is one of sparkly pink things, clouds of glitter, and plastic high heels.
They say that when a girl marries, she looks to find someone that is like her dad. My dad and Noel are a lot alike, but in many ways are very different. I don't think my dad would have been caught dead in a tutu, something I have seen Noel do more than once. (Now, if his granddaughter asked him to, that might be a different story.) I would never have asked him to paint my nails-he wouldn't have known what to do with himself. We did, however, sculpt many an awesome Play-Doh creation together, and don't even get me started on our puzzle-building skills.
My dad had two sons after I was born, so he got his fair share of all things boy. Noel, though, won't get that chance, as our two daughters are it for us. Luckily, Madi & Sydney also enjoy baseball, monster trucks, rock music, dirt, and all the stereotypical boy things too, even though they prefer frills and lace.
Good thing Noel wears it well.
The father of a daughter is nothing but a high-class hostage. A father turns a stony face to his sons, berates them, shakes his antlers, paws the ground, snorts, runs them off into the underbrush, but when his daughter puts her arm over his shoulder and says, "Daddy, I need to ask you something," he is a pat of butter in a hot frying pan.
~ Garrison Keillor
Saturday, May 26, 2012
Patience Is...
..Standing at your child's bedside, staring at the monitors.
..Carefully maneuvering chest tubes and wires just to touch their skin.
..Whispering in their ear how brave and strong they are.
..Not being able to hold your baby for weeks on end.
..Holding your breath on extubation day, so hopeful that it will be tolerated.
..Waiting, and waiting, and waiting for her to say something. Anything. And then, when she does, it's...
...wait for it...
...wait for it.. (see, I am teaching you patience too!)
"WOODY!! WOODY WOODY WOODY!"
I could be offended, but then again, who can compete with this guy?
..Carefully maneuvering chest tubes and wires just to touch their skin.
..Whispering in their ear how brave and strong they are.
..Not being able to hold your baby for weeks on end.
..Holding your breath on extubation day, so hopeful that it will be tolerated.
..Waiting, and waiting, and waiting for her to say something. Anything. And then, when she does, it's...
...wait for it...
...wait for it.. (see, I am teaching you patience too!)
"WOODY!! WOODY WOODY WOODY!"
I could be offended, but then again, who can compete with this guy?
Monday, May 14, 2012
Scars
I never thought much about scars a few years ago. They were what they were-reminders of bike rides gone wrong, sword fights with brothers, and run-ins with furniture.
They are not "just" scars to me anymore.
When I look at my daughters' chests, there is a thin line running down the center. Madi's, with almost three years of healing gone by, is a faint white. Sydney's of course, being only 3 weeks old, isn't even at the point where you would call it a scar. It's still a healing incision.
These tiny thin lines speak such volumes to me.
They say "Look at what I have survived. I am a warrior." They act as reminders that life is something to be treasured, and we should never take any piece of it for granted. It's so cliche but then again the best cliches are centered in truth.
I hope that when they are older, Madi & Sydney are not ashamed of their "zippers." That they know that they earned every mark because of their strength, determination, and their will to live. I may be their mother, and therefore biased, but I do believe my girls are perhaps the strongest kids on the planet. No child should ever have to go through what they have, but they have come out (so far anyway) on the other side of it having taught many of us a great lesson. More than one, for that matter.
I have never thought of motherhood as anything less than a blessing. Yes, at times it has been hard to remember. I have often had moments where I questioned my ability to be a good parent.
When the bad days come, and they do, where the kids cannot seem to leave each other alone, and there are toys all over the floor; when Madi is mouthy and Sydney is whiny, when neither child's ears are open to what I have to say, it just takes one quick glance to make me think differently.
I catch a faint white line peeking out from Madi's shirt collar.
I stop what I am doing, for just one minute, and touch that scar.
And thank God that it's there.
They are not "just" scars to me anymore.
When I look at my daughters' chests, there is a thin line running down the center. Madi's, with almost three years of healing gone by, is a faint white. Sydney's of course, being only 3 weeks old, isn't even at the point where you would call it a scar. It's still a healing incision.
These tiny thin lines speak such volumes to me.
They say "Look at what I have survived. I am a warrior." They act as reminders that life is something to be treasured, and we should never take any piece of it for granted. It's so cliche but then again the best cliches are centered in truth.
I hope that when they are older, Madi & Sydney are not ashamed of their "zippers." That they know that they earned every mark because of their strength, determination, and their will to live. I may be their mother, and therefore biased, but I do believe my girls are perhaps the strongest kids on the planet. No child should ever have to go through what they have, but they have come out (so far anyway) on the other side of it having taught many of us a great lesson. More than one, for that matter.
I have never thought of motherhood as anything less than a blessing. Yes, at times it has been hard to remember. I have often had moments where I questioned my ability to be a good parent.
When the bad days come, and they do, where the kids cannot seem to leave each other alone, and there are toys all over the floor; when Madi is mouthy and Sydney is whiny, when neither child's ears are open to what I have to say, it just takes one quick glance to make me think differently.
I catch a faint white line peeking out from Madi's shirt collar.
I stop what I am doing, for just one minute, and touch that scar.
And thank God that it's there.
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