When you are about to become a mother, everyone and their mother seem to have "the best" advice for you. I honestly cannot tell you how many times someone told me to "just enjoy the small things" while I was expecting Madi, and then again while we were waiting for Sydney to be born. Little did I know how much that lesson would resonate with me as the years went on.
As I have mentioned before, my kids are not your average kids. They have medical issues which led to developmental ones. Therefore, they have to fight a bit harder than a typical kid their age just to do things that you would normally not think twice about.
Now I really appreciate the small things. The really, really small ones. I have become quite the cheerleader of a mom, congratulating my children for things I never thought I would have to. For instance, yesterday I commended Sydney for being such a good girl when she had her echocardiogram done. We tend to really overdo it in this house. Every little accomplishment is a reason for a celebration of some kind. 'Madi put her shoe on? All by herself? Wa-hoo, get that girl a sticker!' 'Oh my gosh, Sydney said a three-word sentence! Anyone got any M&Ms?'
I hope that we aren't going to turn them into monsters that think they should be applauded for everything they do, menial or not. Rather, the lesson I am hoping to impart is that we should count all of our blessings, no matter how trivial they may seem on the outside. The fact that you tied your shoe isn't all that significant. Till you see someone who is recovering from some type of accident and is re-learning to do it. Going to the bathroom? Yeah, everyone does it. No big deal, right? You have obviously not stood next to a loved ones' hospital bed, praying for pee.
We live in a society that is obsessed with comparison. Moms get their kids together for playdates, and it turns into a veritable competition about whose child can recite their alphabet. In three languages. Backwards.
This year, many of us have made our usual resolutions. ( I have firmly resolved to lose weight. Really. This year, I swear.) But I challenge you all in 2012 to take a look around you and count your blessings. Instead of dwelling on what you do not have, why not rejoice in what you do? Believe me, I know that at times that can be hard to do. That's why I am calling this a challenge. It may not always be easy but it certainly will be worth it. Celebrating all the small things in life not only brings you happiness, but it will have a positive impact on all those around you. You know how they say that misery loves company? Well, positivity spreads like wildfire too. Try it!
I plan on continuing to embrace every little victory my children attain. Every step, every calorie, every inch or ounce that they grow. And the big things? I am not ashamed to admit that when Madi finally gets potty trained, I may just hold a ticker-tape parade.
Wednesday, January 4, 2012
Tuesday, December 20, 2011
Very superstitious..
Today, during a session with our wonderful school team, something was pointed out to me: "Boy, Sydney sure is a kid that is really into routine, isn't she? Is Madi that way too?"
Hmm.. yep. They both are. And you know what? I did a bit of thinking this evening and have come to the conclusion that they get it from me. And I, despite my very best intentions at just being an "on-demand' kind of mom, have become a Scheduler. Even worse, I am a Superstitious Scheduler.
Before my children got sick, I did schedule things here and there, but for the most part I kind of just let them determine what they needed and when. Then I got thrown headlong into the cardiac unit of Children's Minneapolis and skidded across the first of many visits there. When I was able to pick myself up and dust myself off, I latched onto the first coping mechanism that came my way: something in my brain just clicked somewhere and decided "You. Must. Write. Everything. Down." So I did.
I find it oddly comforting, writing. It doesn't really matter too much what it is either. It started with medication lists then progressed to vital signs, liquid input/output, calorie counting, and the like. I have to say that it has come in handy more than once-being able to quickly spout off the days "stats" faster than any nurse can read them off of a computer screen. Now that we are past the transplant days-that seemed so long ago and now are quite a blur-I can look back to my oversized calendar pages and see exactly where Madi was at on any given day. I think it makes me appreciate how very far she has come that much more.
Being a mom of kids with medical needs has changed me in a lot of ways. I never would have anticipated, though, the level of superstition that has come over me. It's like I slip into my "rituals" without even realizing that I am doing them anymore. For instance: if we have to go to the Mayo Clinic, I have to have my house totally clean before we leave. Just in case, for some strange and unexpected reason, we would have to be admitted. When Madi first got sick, my mom stopped by my house for something and had to clean up waffle batter that had been sitting out since the ambulance came and took Madi to the hospital a few days before. I hear it wasn't pretty. Also, the night before we go to Mayo, I have to take out everyone's clothes and lay them out-in certain places-and then reorganize my diaper bag and medicine bag for the twentieth time. Following that, I always write a Post-It note with things that couldn't be packed ahead of time on it. Like meds that are in the fridge. Cause, you know, I might forget my kids' heart meds. Pssh. I also absolutely refuse to make solid plans that are for after the date of a Mayo Clinic appointment. Again just in case we were to get unexpectedly admitted. Go ahead, shake your head. I am too.
But cut me a little slack here. It's these small (if not slightly obsessive) "rituals" that get me through what can sometimes be brain-deteriorating feelings of helplessness. Don't judge this Superstitious Scheduler. It's not like I have a voodoo doll.
Yet.
Hmm.. yep. They both are. And you know what? I did a bit of thinking this evening and have come to the conclusion that they get it from me. And I, despite my very best intentions at just being an "on-demand' kind of mom, have become a Scheduler. Even worse, I am a Superstitious Scheduler.
Before my children got sick, I did schedule things here and there, but for the most part I kind of just let them determine what they needed and when. Then I got thrown headlong into the cardiac unit of Children's Minneapolis and skidded across the first of many visits there. When I was able to pick myself up and dust myself off, I latched onto the first coping mechanism that came my way: something in my brain just clicked somewhere and decided "You. Must. Write. Everything. Down." So I did.
I find it oddly comforting, writing. It doesn't really matter too much what it is either. It started with medication lists then progressed to vital signs, liquid input/output, calorie counting, and the like. I have to say that it has come in handy more than once-being able to quickly spout off the days "stats" faster than any nurse can read them off of a computer screen. Now that we are past the transplant days-that seemed so long ago and now are quite a blur-I can look back to my oversized calendar pages and see exactly where Madi was at on any given day. I think it makes me appreciate how very far she has come that much more.
Being a mom of kids with medical needs has changed me in a lot of ways. I never would have anticipated, though, the level of superstition that has come over me. It's like I slip into my "rituals" without even realizing that I am doing them anymore. For instance: if we have to go to the Mayo Clinic, I have to have my house totally clean before we leave. Just in case, for some strange and unexpected reason, we would have to be admitted. When Madi first got sick, my mom stopped by my house for something and had to clean up waffle batter that had been sitting out since the ambulance came and took Madi to the hospital a few days before. I hear it wasn't pretty. Also, the night before we go to Mayo, I have to take out everyone's clothes and lay them out-in certain places-and then reorganize my diaper bag and medicine bag for the twentieth time. Following that, I always write a Post-It note with things that couldn't be packed ahead of time on it. Like meds that are in the fridge. Cause, you know, I might forget my kids' heart meds. Pssh. I also absolutely refuse to make solid plans that are for after the date of a Mayo Clinic appointment. Again just in case we were to get unexpectedly admitted. Go ahead, shake your head. I am too.
But cut me a little slack here. It's these small (if not slightly obsessive) "rituals" that get me through what can sometimes be brain-deteriorating feelings of helplessness. Don't judge this Superstitious Scheduler. It's not like I have a voodoo doll.
Yet.
Wednesday, December 14, 2011
Dear Donor Family: A Christmas letter
Dear Donor Family:
There will never be a Christmas gift that will ever touch what you have given us.
I cannot imagine the strength and unselfishness that it took to make such a brave decision in the face of losing your child. A child that was ten months old, taken from you so senselessly. But you looked past your pain somehow. Maybe it was God that helped you to make this decision. Maybe it was something you always believed in. Either way, you decided to give another person's child (or children) the chance to live. To be a child. To carry on.
Today, my daughter is in school. She learns and grows. She is pink and aglow with life. You made this happen. You took my baby from the brink of death, and made her into who she is today.
I know that there are no words or gestures that will take away the pain you must be feeling. The ache of losing a child is something that never leaves a parent, and while I do not know how you are feeling, I can respect it. The enormity of it. The finality of it. The longing. I wish that this never happened to you. To any parent, for that matter.
I so hope someday to meet you. To put my arms around you and hug you with every fiber of my being. To hear about your child and see photos. To place your ear to Madi's chest so that you can hear this beautiful, strong heart that saved her life. To let you know that your child lives on in our child, and that we will do everything in our power to treasure, to safeguard, and to honor this precious heart and the meaning behind how it came to be Madi's.
Our family will never need an angel atop our Christmas tree. We have a guardian angel watching over Madi whose heart beats strong and sure in her chest. There can be no greater gift than that.
There will never be a Christmas gift that will ever touch what you have given us.
I cannot imagine the strength and unselfishness that it took to make such a brave decision in the face of losing your child. A child that was ten months old, taken from you so senselessly. But you looked past your pain somehow. Maybe it was God that helped you to make this decision. Maybe it was something you always believed in. Either way, you decided to give another person's child (or children) the chance to live. To be a child. To carry on.
Today, my daughter is in school. She learns and grows. She is pink and aglow with life. You made this happen. You took my baby from the brink of death, and made her into who she is today.
I know that there are no words or gestures that will take away the pain you must be feeling. The ache of losing a child is something that never leaves a parent, and while I do not know how you are feeling, I can respect it. The enormity of it. The finality of it. The longing. I wish that this never happened to you. To any parent, for that matter.
I so hope someday to meet you. To put my arms around you and hug you with every fiber of my being. To hear about your child and see photos. To place your ear to Madi's chest so that you can hear this beautiful, strong heart that saved her life. To let you know that your child lives on in our child, and that we will do everything in our power to treasure, to safeguard, and to honor this precious heart and the meaning behind how it came to be Madi's.
Our family will never need an angel atop our Christmas tree. We have a guardian angel watching over Madi whose heart beats strong and sure in her chest. There can be no greater gift than that.
Tuesday, December 6, 2011
Oh, Christmas Tree!
Some people's Christmas trees look like they could be in an issue of Martha Stewart Living magazine. They are beautifully coordinated, with bows and bells and globes that all go with a certain color scheme. The ornaments are placed just so, with the perfect amount of greenery peeking out between each one.
Not my tree! I have to say, even though others' trees are absolutely gorgeous, I like mine and my mom's the best. Why? Because they are full of memories. Each ornament has a story to tell, and it adds to the experience of the tree-decking to be able to recall all the details behind each decoration. My husband likes to give me a hard time because of a few "infamous" ornaments made by yours truly. Two of them are miscellaneous scraps of wood slapped together with glue and doused in glitter. These I made in preschool. The one that tends to bring the biggest amount of laughs, though, is my Virgin Mary ornament. I made that beauty in Sunday school when I was very young. It's a simple paper cutout of Mary with a hole punched at the top, strung with some old yarn. The image of Mary was one that we colored with our crayons. For some odd reason, I chose to color her eyes red. Hmm.. Either Mary had a serious case of pink eye or she was possessed. At least that's what my hubby says. I just laugh with all of the rest of them, because I am thankful. To some, these little scraps may not be worth saving, but to my mom they were bits of undeniable treasure. I am so glad that she had the love and warmth to savor them, and the foresight to hold onto them so that I could fully appreciate them once I had my own tree.
Our Christmas tree is chock full of ornaments. But still, we continue to get them. They commemorate so many things.. there are the two clay pregnant ladies for the two Christmases that I spent with babies in my belly. The one that is in honor of our very first home. One from the first year Noel & I were together, and one for the year that we got married. Our cat, Sheena, has several ornaments on the tree-many featuring her picture-and Noel's dog Harley, who is gone now, has a special star of his own. Each year we get Madi & Sydney each a new ornament to add to their collection. Madi & Sydney help us to decorate the tree, of course, which often results in clusters of ornaments in weird places-piled on top of branches, flung into the center of the tree, laying underneath it, or sometimes they turn up in a toybox a few days later. My "Baby's First Christmas" ornament, shaped like a little pillow, takes its place of pride near the top of the tree every year, so that the cat doesn't mistake it for a toy.
Then we sit back and enjoy it. No popcorn or cranberry garlands drape my tree. I don't have matching sets of colored balls, nor do I have a plethora of beautiful sparkling bows. But my tree? Every year it has many a story to tell. It's one of the best parts of the holiday season, and one that I cherish every year.
Not my tree! I have to say, even though others' trees are absolutely gorgeous, I like mine and my mom's the best. Why? Because they are full of memories. Each ornament has a story to tell, and it adds to the experience of the tree-decking to be able to recall all the details behind each decoration. My husband likes to give me a hard time because of a few "infamous" ornaments made by yours truly. Two of them are miscellaneous scraps of wood slapped together with glue and doused in glitter. These I made in preschool. The one that tends to bring the biggest amount of laughs, though, is my Virgin Mary ornament. I made that beauty in Sunday school when I was very young. It's a simple paper cutout of Mary with a hole punched at the top, strung with some old yarn. The image of Mary was one that we colored with our crayons. For some odd reason, I chose to color her eyes red. Hmm.. Either Mary had a serious case of pink eye or she was possessed. At least that's what my hubby says. I just laugh with all of the rest of them, because I am thankful. To some, these little scraps may not be worth saving, but to my mom they were bits of undeniable treasure. I am so glad that she had the love and warmth to savor them, and the foresight to hold onto them so that I could fully appreciate them once I had my own tree.
Our Christmas tree is chock full of ornaments. But still, we continue to get them. They commemorate so many things.. there are the two clay pregnant ladies for the two Christmases that I spent with babies in my belly. The one that is in honor of our very first home. One from the first year Noel & I were together, and one for the year that we got married. Our cat, Sheena, has several ornaments on the tree-many featuring her picture-and Noel's dog Harley, who is gone now, has a special star of his own. Each year we get Madi & Sydney each a new ornament to add to their collection. Madi & Sydney help us to decorate the tree, of course, which often results in clusters of ornaments in weird places-piled on top of branches, flung into the center of the tree, laying underneath it, or sometimes they turn up in a toybox a few days later. My "Baby's First Christmas" ornament, shaped like a little pillow, takes its place of pride near the top of the tree every year, so that the cat doesn't mistake it for a toy.
Then we sit back and enjoy it. No popcorn or cranberry garlands drape my tree. I don't have matching sets of colored balls, nor do I have a plethora of beautiful sparkling bows. But my tree? Every year it has many a story to tell. It's one of the best parts of the holiday season, and one that I cherish every year.
Monday, December 5, 2011
Welcome To Holland, Part 2
If you are a special needs parent, like me, you have probably heard of the beautiful essay entitled "Welcome To Holland". If you haven't, you can read it here.
Anyway, this morning a friend on Facebook, Kristi Pena-read her son CJ's miraculous story in this previous post from my blog-posted this follow-up to that much-beloved "Welcome To Holland." Like its predecessor, it's beautiful, well-written, and resonates so much with what my life is like. Though I haven't been "in Holland" for over a decade like this writer, it's been awhile now since my first foray into this world, and I would like to think that through the stress, the fear, the anger, I have grown. I hope you enjoy this as much as I do.
Welcome to Holland (Part 2)" by Anonymous
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.
I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.
Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.
I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.
I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Anyway, this morning a friend on Facebook, Kristi Pena-read her son CJ's miraculous story in this previous post from my blog-posted this follow-up to that much-beloved "Welcome To Holland." Like its predecessor, it's beautiful, well-written, and resonates so much with what my life is like. Though I haven't been "in Holland" for over a decade like this writer, it's been awhile now since my first foray into this world, and I would like to think that through the stress, the fear, the anger, I have grown. I hope you enjoy this as much as I do.
Welcome to Holland (Part 2)" by Anonymous
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.
I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.
Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.
I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.
I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Tuesday, November 29, 2011
Why I cannot "think pink:" anymore..
I am sure what I am about to write will offend some people. In fact, it will outright piss people off. But I have something to say, and if I can't say it on my own blog, where can I say it, right?
So here goes nothing:
If I see another "pink for breast cancer" piece of merchandise, I may just puke. Ahh, that feels so much better to get off my chest. For those of you that are already up in arms about my above statement, allow me to explain.
I do not think that breast cancer doesn't deserve awareness. You will never hear me say that it's not a deadly, scary and tragic disease that sickens and claims the lives of way too many people. It's not that I do not think that the people afflicted by it deserve all the best access to treatment and research available.
But the cold hard facts here are this: according to the American Cancer Society, survival rates in breast cancer patients that are now 5 years out from diagnosis are around 89%. That's pretty dang incredible. Advancements in medicine have made it so that there is much more hope for breast cancer patients, and though the treatment is often long, invasive and gruesome, it's gotten more and more effective.
This, sadly, is not the case for children with Congenital Heart Defects. Did you know that for every single dollar raised by the American Heart Association, only about one penny goes to pediatric research? This totally blows my mind. One in every one hundred children have a CHD. They are the number one birth defect, and the number one cause of death in children. Sorry to say, America, but a lot of our adult cases of heart disease have more to do with eating habits, smoking, and lack of exercise than something you were born with.
The majority of research dollars that do get allocated to CHDs come from families that have been afflicted with one. People struggling to pay their own medical bills, people that have lost a child to the awful CHD monster. How can we possibly sit back and let this continue to happen?
It bothers me to my very core that breast cancer awareness is so commercialized. Why can't childhood illnesses-like CHDs or leukemia, say, get the attention that breast cancer gets? How much money from that pink broom you purchased actually goes to breast cancer research? If you are that passionate about breast cancer research, don't go buy a broom. Donate what you would've paid for that pink broom to a cause that supports breast cancer research. Don't fuel the consumerism that has overtaken us all.
As for me, I don't need a pink can opener. I would love to have a blue & red one, though. Those are the colors of CHD awareness. Bet you didn't even know that. Or how about an orange line of pens & pencils, benefiting leukemia research?
It's time we recognized the diseases that are killing our children. Causing them pain and awful surgeries, procedures, and treatments. Forcing them to practically live in a hospital, missing out on what a normal child should be experiencing. Our children deserve to have hope for a future, too.
So save the boobies, by all means!
But while you're saving boobies, save a child too.
So here goes nothing:
If I see another "pink for breast cancer" piece of merchandise, I may just puke. Ahh, that feels so much better to get off my chest. For those of you that are already up in arms about my above statement, allow me to explain.
I do not think that breast cancer doesn't deserve awareness. You will never hear me say that it's not a deadly, scary and tragic disease that sickens and claims the lives of way too many people. It's not that I do not think that the people afflicted by it deserve all the best access to treatment and research available.
But the cold hard facts here are this: according to the American Cancer Society, survival rates in breast cancer patients that are now 5 years out from diagnosis are around 89%. That's pretty dang incredible. Advancements in medicine have made it so that there is much more hope for breast cancer patients, and though the treatment is often long, invasive and gruesome, it's gotten more and more effective.
This, sadly, is not the case for children with Congenital Heart Defects. Did you know that for every single dollar raised by the American Heart Association, only about one penny goes to pediatric research? This totally blows my mind. One in every one hundred children have a CHD. They are the number one birth defect, and the number one cause of death in children. Sorry to say, America, but a lot of our adult cases of heart disease have more to do with eating habits, smoking, and lack of exercise than something you were born with.
The majority of research dollars that do get allocated to CHDs come from families that have been afflicted with one. People struggling to pay their own medical bills, people that have lost a child to the awful CHD monster. How can we possibly sit back and let this continue to happen?
It bothers me to my very core that breast cancer awareness is so commercialized. Why can't childhood illnesses-like CHDs or leukemia, say, get the attention that breast cancer gets? How much money from that pink broom you purchased actually goes to breast cancer research? If you are that passionate about breast cancer research, don't go buy a broom. Donate what you would've paid for that pink broom to a cause that supports breast cancer research. Don't fuel the consumerism that has overtaken us all.
As for me, I don't need a pink can opener. I would love to have a blue & red one, though. Those are the colors of CHD awareness. Bet you didn't even know that. Or how about an orange line of pens & pencils, benefiting leukemia research?
It's time we recognized the diseases that are killing our children. Causing them pain and awful surgeries, procedures, and treatments. Forcing them to practically live in a hospital, missing out on what a normal child should be experiencing. Our children deserve to have hope for a future, too.
So save the boobies, by all means!
But while you're saving boobies, save a child too.
Thursday, November 3, 2011
WAR
I am a worrier. Always have been, probably always will be. Motherhood was bound to make it worse. Throw in a coupla kids with heart problems, and I am lucky to be among the still sane of the world.
You see, cardiomyopathy is a thief. It robs families of so much. Things that you normally would take for granted, like sports, eating correctly, sleep habits, diet, school routine and more. Everything changes. Everything.
Cardiomyopathy has made me second-guess every little thing I do. I even find myself looking through my recollections of both girls' babyhoods and trying to figure out if I "should have" known something or should have done something different. I know that I should not try to look back on what's already gone. I really do. But sometimes it cannot be helped. For instance, when you get shown the xray of your daughter's enlarged heart. Should she have had an echocardiogram six months ago? Would it have made a difference? It's not enough that it knocks you off your feet to get a diagnosis like this not once but twice. No, the cruelty of being a worrier is that certain thoughts and ideas lodge in your brain and don't let go no matter how hard logic and hope tries to make them leave your thoughts.
Cardiomyopathy is the devil on my shoulder. It pesters me, day in and day out. It points out all the things it has done-taken appetites, restricted growth and development, enlarged hearts, caused scars and pain. It's proud, this devil, of the havoc it has wreaked upon my life. It's even more proud that it has attacked BOTH of my children. It sits there in its smug existence, trying its very hardest to sap every ounce of mental and physical strength I have. Some days it takes its toll more than others. Today being one of those days. I wonder sometimes how I am going to be able to do this. To raise two children with complex needs and not lose myself along the way. Fighting for every calorie, every inch in growth, every teeny percentage of improved heart function. Watching my children get poked, prodded, scanned, cut and invaded. Dosing them with medications every single day. Having to tell them no to things that other kids are able to do. Being the bad guy. I want to scream sometimes. To cry out to this awful disease to stop taking and taking and taking. It's time for me to do some taking of my own.
I am taking charge. I am slogging through the muck and mire and saying this:
You can make me worry.
You can make me cry.
You can make me exhausted, self-pitying, and sad.
But you cannot make me stop fighting.
If I have to drag myself through the mud on my face to get to something my kids need, so be it. One of these days, Cardiomyopathy, I am gonna drop-kick that devil off my shoulder.
And laugh with my children about what we have accomplished.
Consider yourself warned, you ugly rotten devil of a disease. This is war.
You see, cardiomyopathy is a thief. It robs families of so much. Things that you normally would take for granted, like sports, eating correctly, sleep habits, diet, school routine and more. Everything changes. Everything.
Cardiomyopathy has made me second-guess every little thing I do. I even find myself looking through my recollections of both girls' babyhoods and trying to figure out if I "should have" known something or should have done something different. I know that I should not try to look back on what's already gone. I really do. But sometimes it cannot be helped. For instance, when you get shown the xray of your daughter's enlarged heart. Should she have had an echocardiogram six months ago? Would it have made a difference? It's not enough that it knocks you off your feet to get a diagnosis like this not once but twice. No, the cruelty of being a worrier is that certain thoughts and ideas lodge in your brain and don't let go no matter how hard logic and hope tries to make them leave your thoughts.
Cardiomyopathy is the devil on my shoulder. It pesters me, day in and day out. It points out all the things it has done-taken appetites, restricted growth and development, enlarged hearts, caused scars and pain. It's proud, this devil, of the havoc it has wreaked upon my life. It's even more proud that it has attacked BOTH of my children. It sits there in its smug existence, trying its very hardest to sap every ounce of mental and physical strength I have. Some days it takes its toll more than others. Today being one of those days. I wonder sometimes how I am going to be able to do this. To raise two children with complex needs and not lose myself along the way. Fighting for every calorie, every inch in growth, every teeny percentage of improved heart function. Watching my children get poked, prodded, scanned, cut and invaded. Dosing them with medications every single day. Having to tell them no to things that other kids are able to do. Being the bad guy. I want to scream sometimes. To cry out to this awful disease to stop taking and taking and taking. It's time for me to do some taking of my own.
I am taking charge. I am slogging through the muck and mire and saying this:
You can make me worry.
You can make me cry.
You can make me exhausted, self-pitying, and sad.
But you cannot make me stop fighting.
If I have to drag myself through the mud on my face to get to something my kids need, so be it. One of these days, Cardiomyopathy, I am gonna drop-kick that devil off my shoulder.
And laugh with my children about what we have accomplished.
Consider yourself warned, you ugly rotten devil of a disease. This is war.
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