Prayed to the Lord for a new beginning, and here I am, broken at the blank page, coffee in hand, trying not to be overcome by nervous mom anxiety. Today my heart kid wouldn’t eat breakfast, wouldn’t drink much, woke up trembling and coughing and with a diaper that wasn’t wet at all. He has a heart cath scheduled for Tuesday (today is Friday) and I don’t know if he’ll be able to go under anesthesia with this cough. He wanted to go to school so badly, but I hated to send him with an almost empty-stomach, with my nervous fretting energy flitting around the little lightbulb of his existence. We got our first snow of the winter, finally, last night and the school wants to let the kids outside, even though it’s only about 20 degrees out right now. I plan on swooping in shortly before release at 11:30, always the earliest mom there, to rescue my son from imminent dehydration/hypothermia/neglect. And to give him his next dose of medications, which I push back so he can go to preschool. But this is all my nervousness—he loves preschool, and they take great care of him. Keeping him home to mope about and stare longingly outside didn’t feel right, either. So I released him like a canary from cupped hands, and he raced into school with a “goodbye Mom!” and didn’t notice at all when I came back in with his snowpants and boots. This makes me happy—to let him be where he wants to be. I just hope he’s ok—that his strange and “off” behavior is nothing more than a touch of a cold and maybe, like me, being woken from 1:30-3:30 am by snowplows.
Life is not tied up in neat packages. Unfinished novels show us that—Hemingway died and left over 300 unpolished, unfinished, or otherwise unpublished works behind. Yet that doesn’t stop us from reading them, from imagining our own endings, or engaging in a self-satisfying flight of fancy, WWHD?” “What Would Hemingway Do?:” imaging the old man had something up his sleeve after all. But reading a published, unfinished novel reminds me that tying up all the ends is merely a convention of the genre, like a sitcom or a blog post—an “all’s well that ends well” or a sense of an anecdote, a false sense that it has happened, and we can now stand back objectively and laugh about it a little—“see how cool I am? I can see the irony in my own situation.” The end. But no, problems aren’t always resolvable, especially not to an author’s or mine or your satisfaction. Maybe we don’t want resolution to a story yet, and resent having to tack on an ending to an otherwise unfolding story. And that is how I feel about my journey right now. I want to write about being a heart mom, but to do with any authority seems to imply I have something final to say about the topic, and just when I think I’ve found my footing, I have more summits to climb after all.
Friday, January 13, 2012
Sunday, September 27, 2009
Miracles vs "Happy Endings"
I often despise checking my email when Sundays or Mondays come around. It’s because I seem to get bad news from the heart community on those days. I have no idea why, but it seems that when I always find out over the weekends (or Monday, if I neglect to get online on Sunday). Yesterday I got that sinking feeling again when I hopped on the computer. And found out a nice couple I met this past month had lost their daughter over the weekend, and another child with HLHS had died of the swine flu (I have a hard time using the more politically correct term H1N1, since that’s what I think of this flu virus as—swine). Another phenomenon in HLHS news is that when it rains, it cascades. For example, a couple months might pass where I hear nothing but good (including mundane—mundane is good in the HLHS family’s life, as it means no surgeries, etc!). Then suddenly, I’ll hear about several huge obstacles, battles, and/or losses at once.
This trend causes me to wonder, sometimes, if there are any happy endings with HLHS. At these times, I often get buried under the waterfall—I think about how more children than I can remember have died of HLHS since Kieran was born. Those aren’t remote numbers I got from an informational source—they’re the stories of people I knew personally or virtually. Sometimes the prayer list gets too long, sometimes I can’t remember all the names of all the children and families I want to pray for—those in the hospital, going into surgery, facing loss, facing uncertainties—and I have to, as another heart parents puts it, “send a mass email to God.”
The other day, I brought home the movie “Marley and Me” from the library, and Shawn asked me, “why does the yellow lab always die at the end?!” I replied, “I don’t know, but I guess this one’s a true story, so there’s not an ultimately a happy ending—of course it’s going to end with the dog’s death.” My cynical remark made me realize that I need to think about the “happy ending” concept. What would a happy ending to the movie have been? That Marley is cured and spends the rest of his days snoozing in the sun until…? Was I stuck on a Hollywood ending—the spirit of which says life will stop at that one happy moment of resolution—the newly-married couple will ride off in the sunset, to never grow old and know decline, hardship, and loss? If all lives end in death, what really is a happy ending?
When I examined what I thought of as a “happy ending” for a kid with HLHS, I certainly didn’t imagine a child in a hospital bed, drs shaking their heads, and parents’ hearts breaking. So what was my version? That a kid with HLHS could live to an old age—grow old, have loves, have a family? Well, I think as parents we all want those things for our children. And some kids with HLHS have, indeed, done some of these very things. There’s nothing wrong with wanting that for our children. But should we consider this progression of events the be-all end-all of a happy ending? The measure of a life? Is that our worldly view of a happy ending—the one to which we’re holding on and refusing to see other definitions?
If we truly believe that whatever is lost will be returned to us—someday, somewhere, this life or the next—in manners we never imagined, in a way that goes beyond our wildest dreams—I think there must be a different measure of “happy ending” than longevity and milestones. That measure would be what goes beyond daily constraints to the atypical, heightened experience of miraculous love and devotion. It often takes the atypical experience, which takes us out of the somnambulation of everyday life, to create the space miracles need in order to happen. Indeed, after Kieran was born and was in the process of undergoing his first two surgeries, I felt exactly that way--like I had just awoken from a long dream, that the mask and sheen that we put over reality had been lifted away. And thus, many of my worldly measures of value revealed themselves, and I changed my perspective on many things.
Maybe “the happy ending” is one of the hardest of these to let go. “A life well-lived,” we might like to say. But the life well lived should not be measured in months or years—but in love, impact—in how much one can cause a change of heart in others.
This trend causes me to wonder, sometimes, if there are any happy endings with HLHS. At these times, I often get buried under the waterfall—I think about how more children than I can remember have died of HLHS since Kieran was born. Those aren’t remote numbers I got from an informational source—they’re the stories of people I knew personally or virtually. Sometimes the prayer list gets too long, sometimes I can’t remember all the names of all the children and families I want to pray for—those in the hospital, going into surgery, facing loss, facing uncertainties—and I have to, as another heart parents puts it, “send a mass email to God.”
The other day, I brought home the movie “Marley and Me” from the library, and Shawn asked me, “why does the yellow lab always die at the end?!” I replied, “I don’t know, but I guess this one’s a true story, so there’s not an ultimately a happy ending—of course it’s going to end with the dog’s death.” My cynical remark made me realize that I need to think about the “happy ending” concept. What would a happy ending to the movie have been? That Marley is cured and spends the rest of his days snoozing in the sun until…? Was I stuck on a Hollywood ending—the spirit of which says life will stop at that one happy moment of resolution—the newly-married couple will ride off in the sunset, to never grow old and know decline, hardship, and loss? If all lives end in death, what really is a happy ending?
When I examined what I thought of as a “happy ending” for a kid with HLHS, I certainly didn’t imagine a child in a hospital bed, drs shaking their heads, and parents’ hearts breaking. So what was my version? That a kid with HLHS could live to an old age—grow old, have loves, have a family? Well, I think as parents we all want those things for our children. And some kids with HLHS have, indeed, done some of these very things. There’s nothing wrong with wanting that for our children. But should we consider this progression of events the be-all end-all of a happy ending? The measure of a life? Is that our worldly view of a happy ending—the one to which we’re holding on and refusing to see other definitions?
If we truly believe that whatever is lost will be returned to us—someday, somewhere, this life or the next—in manners we never imagined, in a way that goes beyond our wildest dreams—I think there must be a different measure of “happy ending” than longevity and milestones. That measure would be what goes beyond daily constraints to the atypical, heightened experience of miraculous love and devotion. It often takes the atypical experience, which takes us out of the somnambulation of everyday life, to create the space miracles need in order to happen. Indeed, after Kieran was born and was in the process of undergoing his first two surgeries, I felt exactly that way--like I had just awoken from a long dream, that the mask and sheen that we put over reality had been lifted away. And thus, many of my worldly measures of value revealed themselves, and I changed my perspective on many things.
Maybe “the happy ending” is one of the hardest of these to let go. “A life well-lived,” we might like to say. But the life well lived should not be measured in months or years—but in love, impact—in how much one can cause a change of heart in others.
Wednesday, July 29, 2009
Cross-pollination
There's been a bit of cross-pollination between this and another of my blogs...I'm going to post this little sermon I wrote on parenting and family, since it relates to the heart-journey:
Wednesday, July 1, 2009
And the Sins of the Fathers...
The intangible inheritance parents pass on to their children is the earliest impression of God’s character. Unfair as it may be, as big of a responsibility it is, children learn about God from the way their parents treat them—it’s no coincidence that we often perceive God as a father or mother figure. In the early years, parents are their children’s creators, providers, nurturers, caretakers, and teachers. Parents can give or take away. Their word is (usually) law and their pronouncements are judgments and decrees. Parents can be unfair and mysterious to a child, with ways that are unknown (“because I said so, and I am [God]. Who are you to question?”).
As a young child, your parent pretty much IS God—your primary example of love and relationship. The loving aspects of parenthood are a tiny slice of God’s perfect parenthood. The selfish, fallen aspects are the mark of our human, earthly status.
It took me a very long time to realize how my upbringing was reflected in my relationship with God. Having very critical, unpredictable parents made me perceive a God that was judgmental and unpredictably loving. A God who thought I wasn’t good enough—a capricious and whimsical God. This image of God was dysfunctional, and for years caused me to doubt and distrust God’s nature.
If we take a good look at how we view God, we often find that the picture was influenced by some of our earliest childhood experiences. Maybe for some of us, it felt like God was never around or emotionally unavailable. Maybe we couldn’t live up to his larger-than-life personality or expectations; maybe we never felt good enough. Maybe God was cold and distant, uncaring or selfish—maybe a user…maybe unreliable, egotistical, arrogant, hypocritical.
Only after I became a parent myself did I realize how God might really see me and How He might really Be. First of all, my son is not “perfect,” just as we are not perfect in the eyes of God. He was born with a single ventricle heart. But this does not mean I love my son any less. Indeed, children with special needs are called “special” for a reason. I won’t go so far as to say that “heart parents” love their children more than “normal parents” (after all, I wouldn’t know for sure)—but almost. I’ll stop just short of saying that. My son was born with a defect, as we are all born with the defect of original sin. I think God wants to see us succeed in our spiritual journeys all the more because of our human disadvantage.
Secondly, the life our son is living is not the life we had planned for him, much like God’s original plan for humankind is not what we are all living now. Our original plan for our son was an idyllic babyhood filled with swim classes at the YMCA, baby yoga, and travel—not open-heart surgeries, long hospital stays, and countless medical procedures. Am I disappointed in the situation? Yes. Am I disappointed in my son? No. My son's life is filled with a lot more pain and suffering than I would have ever wanted. Now I understand some of the pain God must feel at our human suffering.Parents see their children as their most perfect creations.
Parents take pride in their scrawny, puny newborns and in their eyes, these newborns are the cutest to ever grace the universe. As our children grow older, we set rules for them that they don’t always understand. Sometimes we become frustrated, angry, or hurt when they are ungrateful or when they disobey us. But we always forgive them when they truly repent, no matter how grave the offense.
So where does this “punish the children for the sins of their fathers” idea come from? Deuteronomy 5:9-10: “I do not leave unpunished the sins of those who hate me, but I punish the children for the sins of their parents to the third and fourth generations. But I lavish my love on those who love me and obey my commands, even for a thousand generations.” I’m not a reverend, but my layperson interpretation of these 2 verses is that love is the greater force here—a force that sets us free from the examples of previous generations.
Maybe what God meant was not that He would exact punishment for its own sake on a sinner’s children, but that repeating the mistakes of one’s parents is punishment enough, and is the intangible inheritance of a human primary example. It is a warning to parents that history repeats itself, and can put subsequent generations at considerable disadvantage. Indeed, to overcome the sins of one’s father or mother, it takes conscious realization, supplication, and a little divine intervention. One of my good friends mentioned years ago that only God could break the patterns families can fall into and pass down through generations, and that we need to consciously ask God to shatter the chains that tie us to our forefathers. It can be something as serious as alcoholism, abuse, depression, and abandonment to more oblique family attributes like disapproval, pride, or sanctimoniousness. Take a good look at what you’ve inherited from your family—then ask God to set you free.
Wednesday, July 1, 2009
And the Sins of the Fathers...
The intangible inheritance parents pass on to their children is the earliest impression of God’s character. Unfair as it may be, as big of a responsibility it is, children learn about God from the way their parents treat them—it’s no coincidence that we often perceive God as a father or mother figure. In the early years, parents are their children’s creators, providers, nurturers, caretakers, and teachers. Parents can give or take away. Their word is (usually) law and their pronouncements are judgments and decrees. Parents can be unfair and mysterious to a child, with ways that are unknown (“because I said so, and I am [God]. Who are you to question?”).
As a young child, your parent pretty much IS God—your primary example of love and relationship. The loving aspects of parenthood are a tiny slice of God’s perfect parenthood. The selfish, fallen aspects are the mark of our human, earthly status.
It took me a very long time to realize how my upbringing was reflected in my relationship with God. Having very critical, unpredictable parents made me perceive a God that was judgmental and unpredictably loving. A God who thought I wasn’t good enough—a capricious and whimsical God. This image of God was dysfunctional, and for years caused me to doubt and distrust God’s nature.
If we take a good look at how we view God, we often find that the picture was influenced by some of our earliest childhood experiences. Maybe for some of us, it felt like God was never around or emotionally unavailable. Maybe we couldn’t live up to his larger-than-life personality or expectations; maybe we never felt good enough. Maybe God was cold and distant, uncaring or selfish—maybe a user…maybe unreliable, egotistical, arrogant, hypocritical.
Only after I became a parent myself did I realize how God might really see me and How He might really Be. First of all, my son is not “perfect,” just as we are not perfect in the eyes of God. He was born with a single ventricle heart. But this does not mean I love my son any less. Indeed, children with special needs are called “special” for a reason. I won’t go so far as to say that “heart parents” love their children more than “normal parents” (after all, I wouldn’t know for sure)—but almost. I’ll stop just short of saying that. My son was born with a defect, as we are all born with the defect of original sin. I think God wants to see us succeed in our spiritual journeys all the more because of our human disadvantage.
Secondly, the life our son is living is not the life we had planned for him, much like God’s original plan for humankind is not what we are all living now. Our original plan for our son was an idyllic babyhood filled with swim classes at the YMCA, baby yoga, and travel—not open-heart surgeries, long hospital stays, and countless medical procedures. Am I disappointed in the situation? Yes. Am I disappointed in my son? No. My son's life is filled with a lot more pain and suffering than I would have ever wanted. Now I understand some of the pain God must feel at our human suffering.Parents see their children as their most perfect creations.
Parents take pride in their scrawny, puny newborns and in their eyes, these newborns are the cutest to ever grace the universe. As our children grow older, we set rules for them that they don’t always understand. Sometimes we become frustrated, angry, or hurt when they are ungrateful or when they disobey us. But we always forgive them when they truly repent, no matter how grave the offense.
So where does this “punish the children for the sins of their fathers” idea come from? Deuteronomy 5:9-10: “I do not leave unpunished the sins of those who hate me, but I punish the children for the sins of their parents to the third and fourth generations. But I lavish my love on those who love me and obey my commands, even for a thousand generations.” I’m not a reverend, but my layperson interpretation of these 2 verses is that love is the greater force here—a force that sets us free from the examples of previous generations.
Maybe what God meant was not that He would exact punishment for its own sake on a sinner’s children, but that repeating the mistakes of one’s parents is punishment enough, and is the intangible inheritance of a human primary example. It is a warning to parents that history repeats itself, and can put subsequent generations at considerable disadvantage. Indeed, to overcome the sins of one’s father or mother, it takes conscious realization, supplication, and a little divine intervention. One of my good friends mentioned years ago that only God could break the patterns families can fall into and pass down through generations, and that we need to consciously ask God to shatter the chains that tie us to our forefathers. It can be something as serious as alcoholism, abuse, depression, and abandonment to more oblique family attributes like disapproval, pride, or sanctimoniousness. Take a good look at what you’ve inherited from your family—then ask God to set you free.
Friday, July 10, 2009
Sometimes, It's the Little, Symbolic Things That Set You Off...
I've been feeling pretty overwhelmed this week and had gotten a bit discouraged, so this post is mostly to get some things off my chest. Kieran has his next cardiology apt next week, and after what we were told at the last one, I'm already feeling more anxiety than my typical pre-Children's-Hospital-visit level. Even to the point that I'm dodging social engagements for several days post-appointment, because I fear if the apt doesn't go well or we hear more bad news, I won't feel like meeting with friends and having to pretend everything is ok. I also had my brother's wedding this week, which was truly lovely...but going to an extended family event usually takes a lot out of me. Combined with dealing with some feeding and bedtime issues, and the customary physical and occupational therapy, and some other (non-parenting) "issues" to deal with outside of the homesphere, my resolve started getting a little shaky.
Let's put it this way, in travelspeak: Let's say you're living abroad, and everything seems to be going just fine. You're starting to understand the language. You feel accepted; your neighbors and host family like you, you play some soccer with the neighborhood kids, you can bargain for a few limes at the corner market.
Then, you get invited to a friend of a friend's wedding. You dress up, you arrive ready to take part in the festivities...and no one talks to you. You try to get into a few conversations, but no one seems interested. People cluster with their backs to you, and you feel ignored or at least forgotten. You just feel so...different. You wonder, "why am I not fitting in? why can't I be accepted?" Now, maybe some gregarious, magnetic individuals can overcome this and manage to have a great time despite the "outsider" vibe. But in these situations, I often find myself feeling frustrated and deficient, wondering how people at the event see me, feeling all my insecurities about being there surface, and questioning my ability to really be accepted in a place you would really like to be a part of.
Of course, it's a minor setback or unfortunate situation, and not worth getting upset over. However, when you already feel different or vulnerable, something that should be insignificant gets blown out of proportion. This is how I've been feeling the past couple weeks in some of my attempts to introduce Kieran to other children (which he loves) and get to know other parents.
The thing is, I never realized before having Kieran just how much being born with a medical condition can affect so many areas of a baby's development. How interconnected things are at that early, important stage. Simply, the surgeries and recovery periods require a relatively large span of a baby's new life to be spent lying in bed. It's not as simple as just catching up, because certain weaknesses and habits often develop in association, such as favoring turning the head to one side (say, towards a window or visitor's chair), or keeping the arms close to the body to protect the incision area. Of course, they're too young to be told, "honey, you really need to extend your arms," or "honey, bringing your hands up to your mouth is a very important skill to learn." The feeding issues that arise from heart defects and heart surgeries can cause babies to be small or lag behind in eating, which in turn causes speech development to lag...lags in sitting might cause speech delays due to posture issues...and the list goes on and on. Lack of energy/easy tiring causes many babies with HLHS to take things slow. Coping and compensation mechanisms then kick in, and are very hard to break, making "developmental normalcy" even more challenging.
I don't like the term "behind" as it is applied to children, because "behind" implies that there was an equal starting line in the first place. Not so. What I want to tell people is that kids with serious medical conditions might be proceeding at a pace that outstrides that of a "normal child--" it's just that they began "the race" waaaay back at a different starting line. Not only that, they haven't been just clipping along at a full sprint. They've had hurdles to overcome. They're doing entire obstacle courses while someone else might be doing laps. "Behind" implies a deficiency on the part of the child, as if the child can't "get it."
So. I have to say that for the most part, people have been so accepting, positive, and even downright excited about Kieran. That's why this stupid library storytime shouldn't get me so much...but it did. He *loves* being around other kids. It doesn't matter that they all outmatch him in crawling and walking. It doesn't matter that they knock him down and grab the toys out of his hands. It doesn't matter to him that he sat there while they were all cavorting around. He had a great time. I did not--no one would talk to me. I felt like an outsider, like we were freaks...I kept trying to make conversation and no one was interested. On top of that, people kept confusing Kieran with "Karen" and calling him "she" even after I corrected them.
That was week 1. I thought, "well, surely week 2 will be different." Nope. The same people from the previous week were calling him "Karen" and "she" even though he was dressed in boy clothes. It was so strange. And none of the parents would interact with him or talk to me. It made me so incredibly paranoid and insecure. What were they thinking? Yes, he is thin. Yes, his skin is a little blue. Yes, that is a scar peeking above his shirt. No, he doesn't crawl or walk yet. No, I'm not a nutcase who dresses her girl in boy clothes.
I just felt like such an outcast...and again, who cares? Maybe it is all nothing. Maybe it was nothing personal. Maybe it's just a bad group. Maybe it's my own tentative nature when it comes to making new acquaintances. But...combined with everything earlier in the week, the episodes played on my own doubts and caused some internal frustration.
BUT, then...Kieran started crawling this week!!!!!!! And today, he started pulling up on furniture, all on his own!!!!!! Every single time anyone starts to question Kieran's progress, he blows us all away. Like the speech therapist who came to do her evaluation on his eating skills said, "People always fail to take into account the incredible spirit of these children." Kids who overcome obstacles cannot be reduced to odds, percentiles, statistics, or probabilities...because spirit and will cannot be numerically defined or factored into the formal equation.
So, confidence restored and desire to press on renewed. All along, I've been referring to the HLHS journey as taking place in a remote and less-traveled country, which implies a foreign nation. Now I realize this foreign country is actually my home. It's as if I grew up a stranger in a strange land and am just now seeing, as an adult, my native land. I suddenly learned this week that the realm of "the norm" is the foreign country and always has been. What I often find myself traveling through--everyday life--is the strange place.
Let's put it this way, in travelspeak: Let's say you're living abroad, and everything seems to be going just fine. You're starting to understand the language. You feel accepted; your neighbors and host family like you, you play some soccer with the neighborhood kids, you can bargain for a few limes at the corner market.
Then, you get invited to a friend of a friend's wedding. You dress up, you arrive ready to take part in the festivities...and no one talks to you. You try to get into a few conversations, but no one seems interested. People cluster with their backs to you, and you feel ignored or at least forgotten. You just feel so...different. You wonder, "why am I not fitting in? why can't I be accepted?" Now, maybe some gregarious, magnetic individuals can overcome this and manage to have a great time despite the "outsider" vibe. But in these situations, I often find myself feeling frustrated and deficient, wondering how people at the event see me, feeling all my insecurities about being there surface, and questioning my ability to really be accepted in a place you would really like to be a part of.
Of course, it's a minor setback or unfortunate situation, and not worth getting upset over. However, when you already feel different or vulnerable, something that should be insignificant gets blown out of proportion. This is how I've been feeling the past couple weeks in some of my attempts to introduce Kieran to other children (which he loves) and get to know other parents.
The thing is, I never realized before having Kieran just how much being born with a medical condition can affect so many areas of a baby's development. How interconnected things are at that early, important stage. Simply, the surgeries and recovery periods require a relatively large span of a baby's new life to be spent lying in bed. It's not as simple as just catching up, because certain weaknesses and habits often develop in association, such as favoring turning the head to one side (say, towards a window or visitor's chair), or keeping the arms close to the body to protect the incision area. Of course, they're too young to be told, "honey, you really need to extend your arms," or "honey, bringing your hands up to your mouth is a very important skill to learn." The feeding issues that arise from heart defects and heart surgeries can cause babies to be small or lag behind in eating, which in turn causes speech development to lag...lags in sitting might cause speech delays due to posture issues...and the list goes on and on. Lack of energy/easy tiring causes many babies with HLHS to take things slow. Coping and compensation mechanisms then kick in, and are very hard to break, making "developmental normalcy" even more challenging.
I don't like the term "behind" as it is applied to children, because "behind" implies that there was an equal starting line in the first place. Not so. What I want to tell people is that kids with serious medical conditions might be proceeding at a pace that outstrides that of a "normal child--" it's just that they began "the race" waaaay back at a different starting line. Not only that, they haven't been just clipping along at a full sprint. They've had hurdles to overcome. They're doing entire obstacle courses while someone else might be doing laps. "Behind" implies a deficiency on the part of the child, as if the child can't "get it."
So. I have to say that for the most part, people have been so accepting, positive, and even downright excited about Kieran. That's why this stupid library storytime shouldn't get me so much...but it did. He *loves* being around other kids. It doesn't matter that they all outmatch him in crawling and walking. It doesn't matter that they knock him down and grab the toys out of his hands. It doesn't matter to him that he sat there while they were all cavorting around. He had a great time. I did not--no one would talk to me. I felt like an outsider, like we were freaks...I kept trying to make conversation and no one was interested. On top of that, people kept confusing Kieran with "Karen" and calling him "she" even after I corrected them.
That was week 1. I thought, "well, surely week 2 will be different." Nope. The same people from the previous week were calling him "Karen" and "she" even though he was dressed in boy clothes. It was so strange. And none of the parents would interact with him or talk to me. It made me so incredibly paranoid and insecure. What were they thinking? Yes, he is thin. Yes, his skin is a little blue. Yes, that is a scar peeking above his shirt. No, he doesn't crawl or walk yet. No, I'm not a nutcase who dresses her girl in boy clothes.
I just felt like such an outcast...and again, who cares? Maybe it is all nothing. Maybe it was nothing personal. Maybe it's just a bad group. Maybe it's my own tentative nature when it comes to making new acquaintances. But...combined with everything earlier in the week, the episodes played on my own doubts and caused some internal frustration.
BUT, then...Kieran started crawling this week!!!!!!! And today, he started pulling up on furniture, all on his own!!!!!! Every single time anyone starts to question Kieran's progress, he blows us all away. Like the speech therapist who came to do her evaluation on his eating skills said, "People always fail to take into account the incredible spirit of these children." Kids who overcome obstacles cannot be reduced to odds, percentiles, statistics, or probabilities...because spirit and will cannot be numerically defined or factored into the formal equation.
So, confidence restored and desire to press on renewed. All along, I've been referring to the HLHS journey as taking place in a remote and less-traveled country, which implies a foreign nation. Now I realize this foreign country is actually my home. It's as if I grew up a stranger in a strange land and am just now seeing, as an adult, my native land. I suddenly learned this week that the realm of "the norm" is the foreign country and always has been. What I often find myself traveling through--everyday life--is the strange place.
Monday, June 22, 2009
Our True Home
All along, I have been writing about HLHS being a journey through a less-travelled land. But we are really all travellers through the universe and pilgrims here on earth. We only mistake this for our home, and because of this we often become too comfortable here.
One of the wisest men of the 20th century, C. S. Lewis, wrote in the Problem of Pain, “our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”
Maybe I came to feel too easy in this world--until HLHS came into our lives. HLHS reminds me every single day to take a more eternal view of things, and to not get too comfortable on this earth, lest I think that it is my home. HLHS reminds me not to judge things, their importance, actions, or people from a worldly standpoint, but to try to see them as God might see them.
One of my favorite parts of Lewis' Mere Christianity is this passage (which I quoted on my myspace blog before I left for Mongolia):
"If I find myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world...probably earthly pleasures were never meant to satisfy it, but only to arouse it, to suggest the real thing. If that is so, I must take care, on the one hand, never to despise, or be unthankful for, these earthly blessings, and on the other, never to mistake them for the somthing else of which they are only a kind of copy or echo, or mirage. I must keep alive in myself the desire for my true country, which I shall not find til after death; I must never let it get snowed under or turned aside; I must make it the main object of life to press on to that other country and to help others to do the same."
One of the wisest men of the 20th century, C. S. Lewis, wrote in the Problem of Pain, “our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”
Maybe I came to feel too easy in this world--until HLHS came into our lives. HLHS reminds me every single day to take a more eternal view of things, and to not get too comfortable on this earth, lest I think that it is my home. HLHS reminds me not to judge things, their importance, actions, or people from a worldly standpoint, but to try to see them as God might see them.
One of my favorite parts of Lewis' Mere Christianity is this passage (which I quoted on my myspace blog before I left for Mongolia):
"If I find myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world...probably earthly pleasures were never meant to satisfy it, but only to arouse it, to suggest the real thing. If that is so, I must take care, on the one hand, never to despise, or be unthankful for, these earthly blessings, and on the other, never to mistake them for the somthing else of which they are only a kind of copy or echo, or mirage. I must keep alive in myself the desire for my true country, which I shall not find til after death; I must never let it get snowed under or turned aside; I must make it the main object of life to press on to that other country and to help others to do the same."
Monday, June 1, 2009
Road Signs on an Unknown Road
Sometimes, there's just so much to say...that you don't know what to say. Many HLHS families have been in my prayers these past couple weeks. 2 precious children lost and 2 more in the hospital whose moms are being told nothing more can be done.
The following is my side of an email conversation I had with a friend after Kieran's last cardiology appointment, at which we got some unsettling results from his ECHO. I don't think said friend will mind if I post it here.
"So last night I was talking to someone about Kieran, and she said, 'just look for a sign from God; He will send you a message that He cares and that everything will be ok.' I was kind of like 'ok, if you say so...' because honestly my faith I think at this point can be compared to a flag that's flying over a battlefield in tatters. I didn't really think much about it after she said that but as I was driving today, I flipped to npr and they were interviewing a singer named John Doe; just as I was about the change the station he started singing a song that started off like this:
There was a time
When the sunshine played in your soft blond hair
Reflected in your golden eyes
You leaned back your head and you laughed about tomorrow
And there it came like a new day
The sun in the sky beamed
Water sparkled down the stream
We knew this would all go away but not today
And when it did you were better
Better than the day you were born
Not quite so perfectly formed
The only wish I had that day that it would stay
Just a little more time with you
With me with you
Just a little more time with you
and me
Down by the stream in the mountains
I promised you faithfully
That I would never leave
If and when I went away I'd still protect you
And I felt like that was the sign God had for me! And even more so, since Kieran's middle name means mountain and one of my friends recently started calling him her mountain. Anyway, it was just perfect."
You can hear John Doe perform this song live on npr about 37 min into this broadcast. I copied song lyrics from Kathleen Edwards' site.
The following is my side of an email conversation I had with a friend after Kieran's last cardiology appointment, at which we got some unsettling results from his ECHO. I don't think said friend will mind if I post it here.
"So last night I was talking to someone about Kieran, and she said, 'just look for a sign from God; He will send you a message that He cares and that everything will be ok.' I was kind of like 'ok, if you say so...' because honestly my faith I think at this point can be compared to a flag that's flying over a battlefield in tatters. I didn't really think much about it after she said that but as I was driving today, I flipped to npr and they were interviewing a singer named John Doe; just as I was about the change the station he started singing a song that started off like this:
There was a time
When the sunshine played in your soft blond hair
Reflected in your golden eyes
You leaned back your head and you laughed about tomorrow
And there it came like a new day
The sun in the sky beamed
Water sparkled down the stream
We knew this would all go away but not today
And when it did you were better
Better than the day you were born
Not quite so perfectly formed
The only wish I had that day that it would stay
Just a little more time with you
With me with you
Just a little more time with you
and me
Down by the stream in the mountains
I promised you faithfully
That I would never leave
If and when I went away I'd still protect you
And I felt like that was the sign God had for me! And even more so, since Kieran's middle name means mountain and one of my friends recently started calling him her mountain. Anyway, it was just perfect."
You can hear John Doe perform this song live on npr about 37 min into this broadcast. I copied song lyrics from Kathleen Edwards' site.
Thursday, May 28, 2009
Culture Shock
One thing I learned right away after Kieran's HLHS diagnosis was that support can often come from the most unexpected sources. And in some cases, the people you expected to be there for you were entirely absent. Isn't that true when one travels too? It says a lot about humanity when someone you just met offers you hospitality or shows you special kindness, or when strangers come to your aid in a pinch. And it's equally shocking when those you might turn to for aid (paid security guards, cops) turn out to be corrupt or cowardly.
On a bit of a different topic, I was thinking today about culture shock. One of the difficulties in navigating a new culture successfully is striking a balance between adjusting your appearance and habits, but keeping your identity intact. This was a more dramatic balancing act when I lived in Nepal than in Mongolia, as Nepal had more expectations for female dress and behavior. Lately, I've been thinking that a large part of my current dilemma is that I've tried to change my identity too much along the HLHS journey. Not only did I become a "stay at home" mom (which I've been enjoying and don't regret), which was a huge adjustment in itself, but I've tried to change myself from the woman who's always on the go, who loves to go out and be out in the world, to this much more isolated person who feels so much more limited--not only in the general parenthood way, but by the concerns of Kieran's heart condition as well. Refridgerated medications and cold & flu season in WI put a damper on movement (and social activity), for example.
So, we're now trying to live our lives again, because we need to break the unsustainable isolation/limitation trend. But it is hard--for one, when we take Kieran out and people cough and sneeze all around us, I reflexively cringe. But beyond that, I suddenly feel all this disapproval from my family and a few other interested parties re: daycare or moving to a different city. I am feeling a lot of confusion and opposition right now regarding what Shawn and I think is for the overall, long-term good of our little family.
Sigh. Talk about cultural differences...I think it's safe to say that I've always found people in my native land to be so afraid of change and so willing to believe that other places can't possibly be any better than here.
Anyway, the obscure point of this culture shock post is that I'm not being who I am. Who any of us are. And that is becoming a big problem.
On a bit of a different topic, I was thinking today about culture shock. One of the difficulties in navigating a new culture successfully is striking a balance between adjusting your appearance and habits, but keeping your identity intact. This was a more dramatic balancing act when I lived in Nepal than in Mongolia, as Nepal had more expectations for female dress and behavior. Lately, I've been thinking that a large part of my current dilemma is that I've tried to change my identity too much along the HLHS journey. Not only did I become a "stay at home" mom (which I've been enjoying and don't regret), which was a huge adjustment in itself, but I've tried to change myself from the woman who's always on the go, who loves to go out and be out in the world, to this much more isolated person who feels so much more limited--not only in the general parenthood way, but by the concerns of Kieran's heart condition as well. Refridgerated medications and cold & flu season in WI put a damper on movement (and social activity), for example.
So, we're now trying to live our lives again, because we need to break the unsustainable isolation/limitation trend. But it is hard--for one, when we take Kieran out and people cough and sneeze all around us, I reflexively cringe. But beyond that, I suddenly feel all this disapproval from my family and a few other interested parties re: daycare or moving to a different city. I am feeling a lot of confusion and opposition right now regarding what Shawn and I think is for the overall, long-term good of our little family.
Sigh. Talk about cultural differences...I think it's safe to say that I've always found people in my native land to be so afraid of change and so willing to believe that other places can't possibly be any better than here.
Anyway, the obscure point of this culture shock post is that I'm not being who I am. Who any of us are. And that is becoming a big problem.
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