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.
Sunday, September 27, 2009
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.
Monday, May 18, 2009
Traveler's Burnout...In Need of Chautaras
I had a couple ideas for posts about some of my experiences in Mongolia and Nepal and how they relate to my HLHS mom journey, but after a cardiology visit this past Thurs that threw us for a loop, I'll have to postpone those for a bit. So instead...
Here I was, trekking in the eastern hills of Nepal. We had gone uphill all day, and I was starting to become exhausted. Towards the end of the afternoon, we started going downhill when suddenly at a turn in the path, I stumbled. My legs gave way and I collapsed flat on my back and was unable to get back up. That was the first and only time I felt such sheer physical exhaustion, my muscles in mutinty against my will to keep going.
Sometimes, the load gets too heavy or the terrain too rough...sometimes you can't keep up...sometimes your body says no when your mind says yes or vice versa. Sometimes you become weary of travelling, of wandering, of living out of a suitcase, of the struggle, of not being completely at ease anywhere. Sometimes you just want to fit in. Welcome to...true burnout.
I was always a bit different--so are most people, right? I wasn't normal, my family wasn't normal--my parents sure weren't. And we all ask what normal is--by normal, I don't mean the majority. Because the majority of people aren't "normal." I refer to what's put before us as the ideal. The manufactured, endorsed view of "normal" that so few of us can measure up to. The stick-thin super model with the D cups on a societal level. The impossible to achieve without some major starvation and plastic surgery and a whole lot of lies and touch-up paint.
Most people can eventually come to terms with not being "normal," or fitting in, and even with their upbringings and backgrounds. Yet, when it comes time to have our own families, we start expecting our nuclear unit to measure up to this anorexic "normal." Why?! We become hypocrites when we look at our husbands/children/kitchens and mentally scream, "why can't we just be normal?"
What is it about me that wants Kieran to be "normal?" Why do so many of us want our kids and familes to "just be normal?" Do we only want difference insofar as we can control it?
Yes, I am feeling a bit weary along the way. But Kieran is so much more than doctors and what they say. Kieran's physical life may quite possibly end--hopefully much later rather than sooner--with drs but not his spirit. He is so much more than a diagnosis, prognosis, medication list, or chart. He goes beyond drs and is already a bit beyond this earth by virtue of his experiences...a part of him is already in heaven and he seems to know it.
Heaven? Do I believe in that stuff? Why yes, actually...although this a topic for another post....
Chautaras are as much a concept as they are tangible locations. Among the hills and mountains of Nepal, they are resting spots along the footpaths that take villagers to loved ones who live days away, sellers to markets, patients to drs, workers to distant jobs, trekkers to destinations. Paths that go where there are no roads; roads that are not travelled enough to be on a map. When you reach a chautara, you can sit on the cool of a stone bench in a tree's shade, surveying how far you've come and how far you've yet to go. And you realize that someone thought of you, the weary traveller. Someone had you in mind...someone created this peaceful spot for you.
Here I was, trekking in the eastern hills of Nepal. We had gone uphill all day, and I was starting to become exhausted. Towards the end of the afternoon, we started going downhill when suddenly at a turn in the path, I stumbled. My legs gave way and I collapsed flat on my back and was unable to get back up. That was the first and only time I felt such sheer physical exhaustion, my muscles in mutinty against my will to keep going.
Sometimes, the load gets too heavy or the terrain too rough...sometimes you can't keep up...sometimes your body says no when your mind says yes or vice versa. Sometimes you become weary of travelling, of wandering, of living out of a suitcase, of the struggle, of not being completely at ease anywhere. Sometimes you just want to fit in. Welcome to...true burnout.
I was always a bit different--so are most people, right? I wasn't normal, my family wasn't normal--my parents sure weren't. And we all ask what normal is--by normal, I don't mean the majority. Because the majority of people aren't "normal." I refer to what's put before us as the ideal. The manufactured, endorsed view of "normal" that so few of us can measure up to. The stick-thin super model with the D cups on a societal level. The impossible to achieve without some major starvation and plastic surgery and a whole lot of lies and touch-up paint.
Most people can eventually come to terms with not being "normal," or fitting in, and even with their upbringings and backgrounds. Yet, when it comes time to have our own families, we start expecting our nuclear unit to measure up to this anorexic "normal." Why?! We become hypocrites when we look at our husbands/children/kitchens and mentally scream, "why can't we just be normal?"
What is it about me that wants Kieran to be "normal?" Why do so many of us want our kids and familes to "just be normal?" Do we only want difference insofar as we can control it?
Yes, I am feeling a bit weary along the way. But Kieran is so much more than doctors and what they say. Kieran's physical life may quite possibly end--hopefully much later rather than sooner--with drs but not his spirit. He is so much more than a diagnosis, prognosis, medication list, or chart. He goes beyond drs and is already a bit beyond this earth by virtue of his experiences...a part of him is already in heaven and he seems to know it.
Heaven? Do I believe in that stuff? Why yes, actually...although this a topic for another post....
Chautaras are as much a concept as they are tangible locations. Among the hills and mountains of Nepal, they are resting spots along the footpaths that take villagers to loved ones who live days away, sellers to markets, patients to drs, workers to distant jobs, trekkers to destinations. Paths that go where there are no roads; roads that are not travelled enough to be on a map. When you reach a chautara, you can sit on the cool of a stone bench in a tree's shade, surveying how far you've come and how far you've yet to go. And you realize that someone thought of you, the weary traveller. Someone had you in mind...someone created this peaceful spot for you.
Monday, May 11, 2009
Thestrals
Last night a friend brought up what many of the parents in our HLHS support group have referred to as "waiting for the other shoe to drop." WOSP?? WOSP is wondering if/when something might go wrong again, the cloud of possibilities, the shadow of the unknown. WOSP is wondering how long things might be ok. How long the good times might last. If our child might need another surgery or heart transplant, when they could get sick, if they might have a stroke, if things might all come crashing down in literally a heartbeat.
But I also think WOSP symbolizes a broader reality--that when something traumatic has happened, it leaves a stain on a person that may fade or be scrubbed away over time, but that cannot ever be fully erased. We can hide the stain or turn it into something beautiful, but it is there. The stain comes to represent the realization of life's constant, permanent interplay between light and shadow, such as how we can enjoy the coming months knowing there is a big surgery coming up.
How can any of us enjoy life knowing what will or could happen--yet, to operate under "i'll just hope it doesn't happen to me" can result in a lot of denial and fear, which is paralyzing in itself and limits the ability to be close to others. Sooner or later, unless we close ourselves off from others, we will all have to deal with the realities of life on this earth.
Luna Lovegood being one of my favorite Harry Potter characters, I remembered while talking to my friend last night that Luna (along with Harry) can see thestrals. Thestrals are dark, shadowy creatures (in the story, of course) that cannot be seen unless someone has endured and accepted personal loss. I think they're brilliantly represented in this picture: http://www.gryffindortriumvirate.net/BookV/thestrals.jpg in which Luna is apparently seen off to the side, attending to one of the creatures while the other students obliviously follow Harry to the Ministry of Magic via phonebooth (I won't spoil for those who haven't read book 5 yet, but those who have will recall this is a particularly fateful night).
Thestrals pull the students to Hogwarts, but those who cannot see them think that the chariot moves of its own accord. What Rowling illustrates through thestrals is that the shadows are there whether we choose to see and accept them or not. They do not just "appear" but are all around us. Their pulling the students' chariot represents the unseen forces of fate, destiny, and death that touch our lives when we think we are moving along by ourselves. While they are feared by some in the books and seen as bad luck by the magical community in general, they are not feared by Luna and Harry, who have a more personal knowledge of them. The "Elder Wand" in book 7 is also referred to as thhe "Wand of Destiny," and is the only wand in the series said to be made of a thestral's hair.
One of the things I've learned because of HLHS is to live with the reality of the thestrals. That the shadow and light is around us all the time, and there is no escaping it as long as we're here, but that we do not need to fear it. That whether we face it or not, we need to learn how to enjoy and be grateful for the time we have. Two separate people on different occaisions have mentioned being lulled into a false sense of security or complacency when it comes to "heart kids," esp with an (as yet) incurable condition like HLHS. But the truth is that we can *all* get lulled into security and complacency, not only forgetting to have a spirit of gratitude for what we have, but blinding us to what's going on in the lives of others around us.
But I also think WOSP symbolizes a broader reality--that when something traumatic has happened, it leaves a stain on a person that may fade or be scrubbed away over time, but that cannot ever be fully erased. We can hide the stain or turn it into something beautiful, but it is there. The stain comes to represent the realization of life's constant, permanent interplay between light and shadow, such as how we can enjoy the coming months knowing there is a big surgery coming up.
How can any of us enjoy life knowing what will or could happen--yet, to operate under "i'll just hope it doesn't happen to me" can result in a lot of denial and fear, which is paralyzing in itself and limits the ability to be close to others. Sooner or later, unless we close ourselves off from others, we will all have to deal with the realities of life on this earth.
Luna Lovegood being one of my favorite Harry Potter characters, I remembered while talking to my friend last night that Luna (along with Harry) can see thestrals. Thestrals are dark, shadowy creatures (in the story, of course) that cannot be seen unless someone has endured and accepted personal loss. I think they're brilliantly represented in this picture: http://www.gryffindortriumvirate.net/BookV/thestrals.jpg in which Luna is apparently seen off to the side, attending to one of the creatures while the other students obliviously follow Harry to the Ministry of Magic via phonebooth (I won't spoil for those who haven't read book 5 yet, but those who have will recall this is a particularly fateful night).
Thestrals pull the students to Hogwarts, but those who cannot see them think that the chariot moves of its own accord. What Rowling illustrates through thestrals is that the shadows are there whether we choose to see and accept them or not. They do not just "appear" but are all around us. Their pulling the students' chariot represents the unseen forces of fate, destiny, and death that touch our lives when we think we are moving along by ourselves. While they are feared by some in the books and seen as bad luck by the magical community in general, they are not feared by Luna and Harry, who have a more personal knowledge of them. The "Elder Wand" in book 7 is also referred to as thhe "Wand of Destiny," and is the only wand in the series said to be made of a thestral's hair.
One of the things I've learned because of HLHS is to live with the reality of the thestrals. That the shadow and light is around us all the time, and there is no escaping it as long as we're here, but that we do not need to fear it. That whether we face it or not, we need to learn how to enjoy and be grateful for the time we have. Two separate people on different occaisions have mentioned being lulled into a false sense of security or complacency when it comes to "heart kids," esp with an (as yet) incurable condition like HLHS. But the truth is that we can *all* get lulled into security and complacency, not only forgetting to have a spirit of gratitude for what we have, but blinding us to what's going on in the lives of others around us.
Going back in Time: Normalizing
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
March 19, 2009
So, here's the update on the little dude! Not much to report on the heart front this time--and isn't that a good thing!!! He got cleared for travel last week!!!!!!! Things look good--at his next check-up, however, he is supposed to be sedated so they can check up on his leaking tricuspid valve, and to see if there's any narrowing of the coronary artery.
We've been working on "normalizing--" as much as possible--and breaking old habits like keeping track of how many cubic centimenters he eats in a day :) I actually even feel like I'm starting to have some free time, so I've been thinking that it might be possible to go back to working earlier than I originally thought, and at least get back to writing for awhile!
So, the rest is just happy baby news stuff!!!!!!! The boy is rolling from 1 end of the living room to another, getting to toys he wants. Not kidding, he is obsessed with his BOOKS, as well as the cats, so I joke that so far he's following in the footsteps of St Kieran of Ireland, with his love of learning and animals :) With his newfound mobility and independence, he seems much happier--willing to entertain himself, and occupies his time with attempting to crawl and creep after the cats (who generously indulge his desire to touch them every once in awhile). He amuses us with his many new verbal skills. He makes these noises so earnestly that I feel kind of bad when I crack up and he gives me a look like, "what's funny?!"
Ah yes, he's developing quite a personality...including a self-consciousness I haven't much seen in babies his age (wanting to do new skills only when he thinks his parents or therapists aren't watching) and glaring at me when he thinks I'm laughing AT him instead of WITH him. His favorite books are such literary classics as Playtime Peekaboo! and Hop! Hop! Hop! When I try to read him things like The Velveteen Rabbit, he quickly gets bored and tries to kick it out of my hands and yank my hair. He's very observant and extremely stubborn. He's crazy about music--mostly making it with his rattles and chimes and baby piano. Now I'm looking forward to finding some friends for him. Where does one start, if your baby isn't in daycare? I'm guessing, library story times and go from there....
March 19, 2009
So, here's the update on the little dude! Not much to report on the heart front this time--and isn't that a good thing!!! He got cleared for travel last week!!!!!!! Things look good--at his next check-up, however, he is supposed to be sedated so they can check up on his leaking tricuspid valve, and to see if there's any narrowing of the coronary artery.
We've been working on "normalizing--" as much as possible--and breaking old habits like keeping track of how many cubic centimenters he eats in a day :) I actually even feel like I'm starting to have some free time, so I've been thinking that it might be possible to go back to working earlier than I originally thought, and at least get back to writing for awhile!
So, the rest is just happy baby news stuff!!!!!!! The boy is rolling from 1 end of the living room to another, getting to toys he wants. Not kidding, he is obsessed with his BOOKS, as well as the cats, so I joke that so far he's following in the footsteps of St Kieran of Ireland, with his love of learning and animals :) With his newfound mobility and independence, he seems much happier--willing to entertain himself, and occupies his time with attempting to crawl and creep after the cats (who generously indulge his desire to touch them every once in awhile). He amuses us with his many new verbal skills. He makes these noises so earnestly that I feel kind of bad when I crack up and he gives me a look like, "what's funny?!"
Ah yes, he's developing quite a personality...including a self-consciousness I haven't much seen in babies his age (wanting to do new skills only when he thinks his parents or therapists aren't watching) and glaring at me when he thinks I'm laughing AT him instead of WITH him. His favorite books are such literary classics as Playtime Peekaboo! and Hop! Hop! Hop! When I try to read him things like The Velveteen Rabbit, he quickly gets bored and tries to kick it out of my hands and yank my hair. He's very observant and extremely stubborn. He's crazy about music--mostly making it with his rattles and chimes and baby piano. Now I'm looking forward to finding some friends for him. Where does one start, if your baby isn't in daycare? I'm guessing, library story times and go from there....
Going back in Time: Glenn Recovery
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
February 2009
Wow! I can't believe that it has been 2 months since we came home from the Glenn already. Kieran is almost 6 months old!! And we have been experiencing something I wasn't sure we would ever have: enjoying being at home with our baby with some semblance of normalcy, with a sense of routine and even a bit of predictablitiy to our days!!!! We seem to have entered that HLHS "honeymoon period" parents told me about...far enough out from the Glenn to be mostly recovered, before we have to worry about the Fontan.
Now that 2 months have passed, I feel like I can finally be a bit more open about what was going on around that time. Kieran's 1st surgery went amazingly well. Several of the cardiologists said that in all their years, they had never seen a baby with HLHS do as well and look as good as Kieran. The Glenn went fairly typically, but I wasn't prepared for it like I should've been after how relatively (and that is a huge "relatively") well the Norwood went.
I don't think Kieran was prepared for it either, and when we came home, 2 nightmarish weeks were spent with him mostly miserable, screaming and wincing every time someone touched him, crying constantly due to pain and headaches and probably general disorientation. Luckily, his OT had some wonderful techniques for getting him to calm down, but for weeks I was wondering if he had changed forever. He's much more relaxed and happy now, but I still feel like the surgery altered his personality...he seems so much more tentative now, and wary of people and new things. I read this book called My Heart Vs the Real World recently, and it's written by a guy who was born with CHD (congenital heart disease), who interviews children with various CHDs...it's all about how they grew up seeing the world differently, and I have to get used to the idea that there is no way these experiences are NOT going to shape who Kieran is and becomes as a person.
I was pretty much a wreck right after the Glenn, having held up well until that point, but overcome by sheer stress and exhaustion immediately after, and was very ill for a good 6 weeks. I wasn't really open about that, though I hinted at strep, sinus infections, and ear infections I got. Anyone who has lived through the interstage period knows the sheer stamina involved in simply keeping your baby alive...a day to day thing where towards the Glenn, your baby might barely have enough energy to eat.
Now, I feel better and finally able to talk about some of this stuff, but life was so unpredictable for the 1st several months, that even now, I wonder if I can make plans for tomorrow, a month from now...after having to cancel anything and everything on a dime, to rush to the hospital or stay home because Kieran was having a "bad day," or stay in because I might be coming down with a cold that could've wound him up in the hospital or worse, not even bothering to commit to even the simplest gathering...even now, it's so hard to believe things might be ok for awhile. I want to meet up with my best friend in DC in the next couple months, but I keep thinking, "will I have to cancel it? will I buy a ticket only to end up staying home?"
Other things...HLHS kids are something of a medical curiousity, and Children's Hospital here in WI does a TON of research on HLHS. It makes them very eager to approach us for countless research studies. They want our DNA--blood and saliva--they want huge 30-pg questionnaires filled out, they want to do developmental assessments on Kieran...I mean, there are just a ton of people in the medical field who approach us. I'm very torn on this, esp given what happened during the last hospital stay. We had been saying yes to about 50% of the research studies, many of which involved taking some of Kieran's blood during routine blood draws.
Results from one of these blood draws the day before the Glenn showed that Kieran tested postive for another horrendous disease, which I won't mention here (think incurable, bodily fluid-borne disease)--which luckily turned out to be a FALSE POSITIVE, but it required us to get him many extra tests, submit to a painful exam, caused strife in my and shawn's relationship, even made me question my faith in God. It was the most horrible time in my life, ever. I found out that he wasn't even supposed to have been tested for all these extra conditions to begin with, and it had caused all this unnecessary heartache...I can't pinpoint to any of the research studies, but I wonder...and it just makes me loathe to consent to ANY more bloodwork beyond what is ABSOLUTELY NECESSARY.
Then, there is the whole notion of not wanting Kieran to grow up feeling like a medical circus sideshow...but then again, I don't yet know how much he'll want HLHS to make up his identity. He might really want to be involved, and contribute to research. He might not. I'm feeling my way through this too, as an "HLHS parent." Some parents are super involved, and have made advocacy, education, nursing, support, whatever, their lives. Some parents don't want to have anything to do with any of that, and want to live their lives as "normally" as possible, and so far I'm kind of in the middle of that spectrum, unsure of where it's going in my own life.
The last thing I can start talking about is some form of survivor's guilt...but it's not guilt, it's more a sense of injustice. Survivor's injustice...1 of my american friends still in mongolia asked me how we can afford all this treatment for Kieran. I don't regret it, I don't feel guilty or that he shouldn't be alive because of his condition. I mean, we had the chance to say no, both during the pregnancy and after he was born. But we were certain we wanted to give him his chances at life. But I do sometimes think about all the resources that have gone and are going into his survival. I think about all the people around the world who are dying of much less serious conditions. And I also think about the very few countries where a baby with HLHS can be treated...USA, Canada, UK, Australia, New Zealand...not so in other places. HLHS is 100% fatal within a few days of life without a heart transplant or the Norwood surgery. One woman who emigrated to the US with her husband so their baby could have the Norwood after birth told us that in Russia, if HLHS is detected on an ultrasound, parents are told to seek an abortion because there is no treatment available in the country. I feel very grateful. But I also wonder why we should be so lucky to live in the US...not only in the US but next to 1 of the best hospitals in the world for HLHS...and about all the others who could be saved but aren't...so what to do with this sense of injustice? I'm still working on that one.
As for Kieran himself, he's doing great. He is happy, he is thus far doing so well. His primary occupations have gone from barely having enough energy to eat and get enough oxygen to yelling at his toys and being obsessed with chewing his hands...but as always, he works 100% of the time on being cute and lovable.....
February 2009
Wow! I can't believe that it has been 2 months since we came home from the Glenn already. Kieran is almost 6 months old!! And we have been experiencing something I wasn't sure we would ever have: enjoying being at home with our baby with some semblance of normalcy, with a sense of routine and even a bit of predictablitiy to our days!!!! We seem to have entered that HLHS "honeymoon period" parents told me about...far enough out from the Glenn to be mostly recovered, before we have to worry about the Fontan.
Now that 2 months have passed, I feel like I can finally be a bit more open about what was going on around that time. Kieran's 1st surgery went amazingly well. Several of the cardiologists said that in all their years, they had never seen a baby with HLHS do as well and look as good as Kieran. The Glenn went fairly typically, but I wasn't prepared for it like I should've been after how relatively (and that is a huge "relatively") well the Norwood went.
I don't think Kieran was prepared for it either, and when we came home, 2 nightmarish weeks were spent with him mostly miserable, screaming and wincing every time someone touched him, crying constantly due to pain and headaches and probably general disorientation. Luckily, his OT had some wonderful techniques for getting him to calm down, but for weeks I was wondering if he had changed forever. He's much more relaxed and happy now, but I still feel like the surgery altered his personality...he seems so much more tentative now, and wary of people and new things. I read this book called My Heart Vs the Real World recently, and it's written by a guy who was born with CHD (congenital heart disease), who interviews children with various CHDs...it's all about how they grew up seeing the world differently, and I have to get used to the idea that there is no way these experiences are NOT going to shape who Kieran is and becomes as a person.
I was pretty much a wreck right after the Glenn, having held up well until that point, but overcome by sheer stress and exhaustion immediately after, and was very ill for a good 6 weeks. I wasn't really open about that, though I hinted at strep, sinus infections, and ear infections I got. Anyone who has lived through the interstage period knows the sheer stamina involved in simply keeping your baby alive...a day to day thing where towards the Glenn, your baby might barely have enough energy to eat.
Now, I feel better and finally able to talk about some of this stuff, but life was so unpredictable for the 1st several months, that even now, I wonder if I can make plans for tomorrow, a month from now...after having to cancel anything and everything on a dime, to rush to the hospital or stay home because Kieran was having a "bad day," or stay in because I might be coming down with a cold that could've wound him up in the hospital or worse, not even bothering to commit to even the simplest gathering...even now, it's so hard to believe things might be ok for awhile. I want to meet up with my best friend in DC in the next couple months, but I keep thinking, "will I have to cancel it? will I buy a ticket only to end up staying home?"
Other things...HLHS kids are something of a medical curiousity, and Children's Hospital here in WI does a TON of research on HLHS. It makes them very eager to approach us for countless research studies. They want our DNA--blood and saliva--they want huge 30-pg questionnaires filled out, they want to do developmental assessments on Kieran...I mean, there are just a ton of people in the medical field who approach us. I'm very torn on this, esp given what happened during the last hospital stay. We had been saying yes to about 50% of the research studies, many of which involved taking some of Kieran's blood during routine blood draws.
Results from one of these blood draws the day before the Glenn showed that Kieran tested postive for another horrendous disease, which I won't mention here (think incurable, bodily fluid-borne disease)--which luckily turned out to be a FALSE POSITIVE, but it required us to get him many extra tests, submit to a painful exam, caused strife in my and shawn's relationship, even made me question my faith in God. It was the most horrible time in my life, ever. I found out that he wasn't even supposed to have been tested for all these extra conditions to begin with, and it had caused all this unnecessary heartache...I can't pinpoint to any of the research studies, but I wonder...and it just makes me loathe to consent to ANY more bloodwork beyond what is ABSOLUTELY NECESSARY.
Then, there is the whole notion of not wanting Kieran to grow up feeling like a medical circus sideshow...but then again, I don't yet know how much he'll want HLHS to make up his identity. He might really want to be involved, and contribute to research. He might not. I'm feeling my way through this too, as an "HLHS parent." Some parents are super involved, and have made advocacy, education, nursing, support, whatever, their lives. Some parents don't want to have anything to do with any of that, and want to live their lives as "normally" as possible, and so far I'm kind of in the middle of that spectrum, unsure of where it's going in my own life.
The last thing I can start talking about is some form of survivor's guilt...but it's not guilt, it's more a sense of injustice. Survivor's injustice...1 of my american friends still in mongolia asked me how we can afford all this treatment for Kieran. I don't regret it, I don't feel guilty or that he shouldn't be alive because of his condition. I mean, we had the chance to say no, both during the pregnancy and after he was born. But we were certain we wanted to give him his chances at life. But I do sometimes think about all the resources that have gone and are going into his survival. I think about all the people around the world who are dying of much less serious conditions. And I also think about the very few countries where a baby with HLHS can be treated...USA, Canada, UK, Australia, New Zealand...not so in other places. HLHS is 100% fatal within a few days of life without a heart transplant or the Norwood surgery. One woman who emigrated to the US with her husband so their baby could have the Norwood after birth told us that in Russia, if HLHS is detected on an ultrasound, parents are told to seek an abortion because there is no treatment available in the country. I feel very grateful. But I also wonder why we should be so lucky to live in the US...not only in the US but next to 1 of the best hospitals in the world for HLHS...and about all the others who could be saved but aren't...so what to do with this sense of injustice? I'm still working on that one.
As for Kieran himself, he's doing great. He is happy, he is thus far doing so well. His primary occupations have gone from barely having enough energy to eat and get enough oxygen to yelling at his toys and being obsessed with chewing his hands...but as always, he works 100% of the time on being cute and lovable.....
Going back in Time: CHD Awareness Week
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
February 11, 2009
In honor of Congenital Heart Disease Awareness Week, which is this week (CHD Awareness Day being 2/14), I've been thinking about what awareness means. We all have causes that we care about, but oftentimes we feel like we can't do much to help--maybe we don't have enough $ to give to all the causes we'd like to, or enough time to volunteer for them, or maybe it's just not in our personality to get out there and shout from the rooftops.
But CHD is a cause that every one of us can do something about, simply by being "aware." And I don't mean just by knowing the facts--the facts that by now I've heard so many times that I have them memorized (CHD is the most common and most fatal birth defect...1 in 10 children is born with CHD...). I've uncovered another, different sort of fact in the past week:
There is a different type of powerful awareness; 1 that goes beyond medical facts, and is something within all of our powers...and it is this: the power of a "heart" child's picture or story can save lives. Someone mentioned recently that when his wife's ultrasound showed HLHS, they were given the 3 typical options: abort, elect the 3 surgeries or heart transplant, or carry the baby to term and opt for "compassionate care" until the baby died. Of course, every child's prognosis is different, and there are times when any of these options might be appropriate. But in cases where prognosis looks hopeful, the choice can boil down to how the case is presented by medical professionals. Even at Children's of WI, which is one of the leading facilities for treating HLHS, we were told on 2 occaisions that we didn't "have" to go through with "this." I can only imagine what it must feel like at hospitals where the staff doesn't have the same expertise.
What really turned it around for the couple I mentioned above, was going online and seeing pictures and reading stories of other children with HLHS who were happy, loved by their families, and frankly radiating with the special glow of a child who has been fighting the good fight. I can say the exact same thing: although we were determined to have Kieran, what gave me hope (and still does) is knowing there are other kids and people out there with HLHS, and seeing their pictures whenever I want (online) to inspire me and know that we're not alone.
To be aware of Kieran is to be aware of CHD, and if you share his story and pictures with anyone and everyone, it could someday give great hope to someone in need. If 1 in 10 babies is born with CHD, it won't be too long before someone you know is saying to a coworker, or friend, or family member: "I know someone who went through that, and he's doing great."
Once I saw pictures of the surgeries, I thought to myself, "I can handle that. It's not as bad as I had imagined." Seeing Kieran's pictures from the surgeries, you might not know him. They might startle you at first. But to an expectant parent who's imagining only the worst, confronted with a diagnosis they never knew existed, and being terrified by all the medicspeak and "full disclosure," they can be a source of relief.
So, I just want everyone to know, I encourage you to share Kieran's story. By all means, wear red if you want, or a bracelet of some color, but use it as a segue to discussing it on a more personal level. We all know someone whose life was touched by CHD (other than Kieran!). I know I'm not the only person reading this who remembers Danny. Danny was filled with life and love and like so many children with disabilities or healh problems, he gave way more to the world than he got back. He was treasured and favored...and he was happy. He died when we were teens, but he was special and will not be forgotten. His life was not without value because he died young. One of the wisest things I have ever heard is, "it's not how much time you have, it's what you do with that time." I wish everyone could live with as much light and love as Danny did...people who live 80 years often do not have what he had. So, even if something tragic happens and Kieran's life ends up shortened due to his HLHS, his life will never be in vain. He's happy and loved, and will hopefully save others' lives too. It's already started, with sharing his story. Today we got a letter from the Children's Miracle Network asking if we'd like to be an ambassador family for stuff like radio and TV stories, benefit marathons, etc to share our story with others. It couldn't have come at a better time....
Going back in Time: Pre-Glenn thoughts
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
November 10, 2008
Wow, well: here we are! Getting close to the next surgery. Things are going really well with Kieran, considering. The boy is a big otter...seriously, he shocked everyone by growing so quickly. He's the size some HLHS babies are at 6 months. I think this time, rather than blog about Kieran himself, I'm going to focus on some of my own recent thoughts.
This past month, I've had a lot of time to think about overcoming my intense fears and phobias about the medical establishment. But in doing so, I've had to confront a lot of spiritual questions as well. Kieran's OT was telling me about her own daughter's heart defect, and I confessed how phobic I am of hospitals and drs. I don't have a phobia of "sick people," like some who hate hospitals do. No, I have a living, breathing fear of medical procedures and practices themselves. To have to survive in that environment day after day, and to watch what Kieran has to go through, has at times almost destroyed me. Kieran's OT responded with, "I think at times in our lives, we are lucky enough to be given opportunities to overcome our fears."
I thought about this, and1) I was perfectly content being afraid of and avoiding the medical establishment.2) Trying to overcome my fear of the above through this situation is like taking someone who's afraid of water, dropping them in the middle of the ocean, and saying, "cheerio! see you when you swin back to shore!"3) In my life, I've always taken difficult experiences and thought, "it's not so bad. This is preparing me for something that is bound to happen in the future, so that it'll be easier to deal with." But this model is now causing me anxiety: what worse situation might I have to deal with in the future, that this situation is helping prepare me for?? Thus, I am not going to think this way anymore.
Spending 32 days living in a corner of a hospital room...I don't even know how to describe it. There was light, there was hope, there was joy...but there was also lonliness, anxiety, worry, the feeling of being so cut off from the rest of the world. One of the most difficult things for all of us to deal with has been the separation. Only 1 parent is allowed to stay overnight in the hospital room, for example, and only 1 parent is allowed in the surgical recovery room. Staying at the hospital makes me want to climb the walls, and all I can think of is escape. But when I do escape, I feel guilty at leaving Kieran, and I go home and cry anyway because Shawn and Kieran are not there. Shawn can handle the hospital environment much better. He has worked in hospitals. He majored in medical social work. He doesn't mind as much. I don't know how he doesn't mind as much. All I know, though, is that when I look to him for strength at the end of the day, he's not there, because only 1 of us can stay with Kieran. Likewise, Kieran is separated from us by medical procedures, by his own journey that we cannot follow him on. The drs wage their wars on disease, sending in reinforcements like drugs and red blood cells, and Shawn and I are left in its wake, tending to the wounded emotions and war traumas. Like how Kieran screamed in terror for 3 hours straight after getting his blood drawn on Sat.
So, all this brings me to a lot of soul-searching on human suffering. Like I've said before, nothing tests one's faith like seeing the suffering of children. What is the 1 reason people give for not believing in God? I don't know for sure, but I would bet it's "if there is a God, why do innocent people suffer?" And who is more innocent than children? There are a few reasons people give for the suffering of children...fallen world, original sin, spiritual warfare, etc. But I think it's all fine and good for us as adults to philosophize about it while babies and children don't understand such complex arguments.
So, what, then, is the point of letting those suffer who cannot understand, who don't have the reasoning capabilities of an adult? If God is trying to make some grand, poignant point, isn't it lost on a 3-month old baby who suffers in war, famine, or disease? We can say, well, this suffering is going to shape who this 3-month old will become--but children die too--so what if this 3-month old doesn't live? One dr told me that we cannot look at the length of one's time on earth to measure the value of their life. That it's not how much time you have, but what you do with that time. I believe that. But what about when that time is filled with suffering one cannot understand or put into perspective? How can you tell a starving child, "God is allowing this to happen to you because we live in a fallen world."
One pastor said in a sermon a couple years ago, "we are all like the children who cannot understand. We are all the children who scream when we get vaccines...the parent knows it is for the good of the child, but the child does not." I believe that. But then again, God has the power to take away our pain whereas earthly parents often don't. God often chooses not to take away our pain--yet, as parents, we would take away our child's pain IF we COULD.
This brought me to wondering about God as a loving Father. Sometimes it feels like living in this world is like your dad plopping you down in the middle of a busy intersection when you're 3 years old, and leaving you there to find your way home. If our dads actually did that, they may very well be taken to court for child abuse or neglect! Would a loving father let his child starve or be victimized if he had the power to stop it?
All these reasons, all these justifications for suffering have pretty much proven to be lacking. But, there is this little thing called faith. We can look to the Bible (or our respective holy books) and we can know Scripture inside out, but it does not mean we have faith. If we expect to have every answer to every question, where is faith? Julian of Norwich (1342-1413) asked on her deathbed, "I felt troubled about all the grief evil men cause the human race because of their wickedness. If God knew beforehand how innocents would suffer...?" Her answer came, "The Lord is not angry at those who press about such questions--'Why do the innocent suffer? Why does God continue to allow sin?' More, He feels pity and compassion on us when we destroy our own peace of mind--for the answer is so great, and our minds are not ready to receive it. The Lord wants us to leave our souls in peace, and to please Him, by leaving these profound questions alone for now."
And I have come to believe this. I have only come to believe this today. When I think about the Bible, God does not promise us immediate relief from suffering. But He does promise a refuge, a resting place, and...peace of mind. He promises that He will take on our pain with us, and that He will walk with us when no one else will, though we cannot always see Him. These things we can have, if nothing else. And I am going to work on accepting this, and this place, for the rest of my life.
November 10, 2008
Wow, well: here we are! Getting close to the next surgery. Things are going really well with Kieran, considering. The boy is a big otter...seriously, he shocked everyone by growing so quickly. He's the size some HLHS babies are at 6 months. I think this time, rather than blog about Kieran himself, I'm going to focus on some of my own recent thoughts.
This past month, I've had a lot of time to think about overcoming my intense fears and phobias about the medical establishment. But in doing so, I've had to confront a lot of spiritual questions as well. Kieran's OT was telling me about her own daughter's heart defect, and I confessed how phobic I am of hospitals and drs. I don't have a phobia of "sick people," like some who hate hospitals do. No, I have a living, breathing fear of medical procedures and practices themselves. To have to survive in that environment day after day, and to watch what Kieran has to go through, has at times almost destroyed me. Kieran's OT responded with, "I think at times in our lives, we are lucky enough to be given opportunities to overcome our fears."
I thought about this, and1) I was perfectly content being afraid of and avoiding the medical establishment.2) Trying to overcome my fear of the above through this situation is like taking someone who's afraid of water, dropping them in the middle of the ocean, and saying, "cheerio! see you when you swin back to shore!"3) In my life, I've always taken difficult experiences and thought, "it's not so bad. This is preparing me for something that is bound to happen in the future, so that it'll be easier to deal with." But this model is now causing me anxiety: what worse situation might I have to deal with in the future, that this situation is helping prepare me for?? Thus, I am not going to think this way anymore.
Spending 32 days living in a corner of a hospital room...I don't even know how to describe it. There was light, there was hope, there was joy...but there was also lonliness, anxiety, worry, the feeling of being so cut off from the rest of the world. One of the most difficult things for all of us to deal with has been the separation. Only 1 parent is allowed to stay overnight in the hospital room, for example, and only 1 parent is allowed in the surgical recovery room. Staying at the hospital makes me want to climb the walls, and all I can think of is escape. But when I do escape, I feel guilty at leaving Kieran, and I go home and cry anyway because Shawn and Kieran are not there. Shawn can handle the hospital environment much better. He has worked in hospitals. He majored in medical social work. He doesn't mind as much. I don't know how he doesn't mind as much. All I know, though, is that when I look to him for strength at the end of the day, he's not there, because only 1 of us can stay with Kieran. Likewise, Kieran is separated from us by medical procedures, by his own journey that we cannot follow him on. The drs wage their wars on disease, sending in reinforcements like drugs and red blood cells, and Shawn and I are left in its wake, tending to the wounded emotions and war traumas. Like how Kieran screamed in terror for 3 hours straight after getting his blood drawn on Sat.
So, all this brings me to a lot of soul-searching on human suffering. Like I've said before, nothing tests one's faith like seeing the suffering of children. What is the 1 reason people give for not believing in God? I don't know for sure, but I would bet it's "if there is a God, why do innocent people suffer?" And who is more innocent than children? There are a few reasons people give for the suffering of children...fallen world, original sin, spiritual warfare, etc. But I think it's all fine and good for us as adults to philosophize about it while babies and children don't understand such complex arguments.
So, what, then, is the point of letting those suffer who cannot understand, who don't have the reasoning capabilities of an adult? If God is trying to make some grand, poignant point, isn't it lost on a 3-month old baby who suffers in war, famine, or disease? We can say, well, this suffering is going to shape who this 3-month old will become--but children die too--so what if this 3-month old doesn't live? One dr told me that we cannot look at the length of one's time on earth to measure the value of their life. That it's not how much time you have, but what you do with that time. I believe that. But what about when that time is filled with suffering one cannot understand or put into perspective? How can you tell a starving child, "God is allowing this to happen to you because we live in a fallen world."
One pastor said in a sermon a couple years ago, "we are all like the children who cannot understand. We are all the children who scream when we get vaccines...the parent knows it is for the good of the child, but the child does not." I believe that. But then again, God has the power to take away our pain whereas earthly parents often don't. God often chooses not to take away our pain--yet, as parents, we would take away our child's pain IF we COULD.
This brought me to wondering about God as a loving Father. Sometimes it feels like living in this world is like your dad plopping you down in the middle of a busy intersection when you're 3 years old, and leaving you there to find your way home. If our dads actually did that, they may very well be taken to court for child abuse or neglect! Would a loving father let his child starve or be victimized if he had the power to stop it?
All these reasons, all these justifications for suffering have pretty much proven to be lacking. But, there is this little thing called faith. We can look to the Bible (or our respective holy books) and we can know Scripture inside out, but it does not mean we have faith. If we expect to have every answer to every question, where is faith? Julian of Norwich (1342-1413) asked on her deathbed, "I felt troubled about all the grief evil men cause the human race because of their wickedness. If God knew beforehand how innocents would suffer...?" Her answer came, "The Lord is not angry at those who press about such questions--'Why do the innocent suffer? Why does God continue to allow sin?' More, He feels pity and compassion on us when we destroy our own peace of mind--for the answer is so great, and our minds are not ready to receive it. The Lord wants us to leave our souls in peace, and to please Him, by leaving these profound questions alone for now."
And I have come to believe this. I have only come to believe this today. When I think about the Bible, God does not promise us immediate relief from suffering. But He does promise a refuge, a resting place, and...peace of mind. He promises that He will take on our pain with us, and that He will walk with us when no one else will, though we cannot always see Him. These things we can have, if nothing else. And I am going to work on accepting this, and this place, for the rest of my life.
Going back in Time: A Norwood rough patch
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
September 5, 2008
So, remember way back when I compared our journey with Kieran's HLHS to travel? I did it because I know travel, I love travel, and travel implies uncharted territory and adventure. Originally I said something to the effect of, "imagine you've always wanted to go to Paris. You get your passport and buy your ticket, and suddenly life denies you a French visa. It suddenly seems like everyone has been to, or is going to go, Paris but you. The plane filled with happy Parisian-goers takes off without you. But suddenly the airline compensates you by giving you free airline miles instead, and you decide to use them towards a new adventure. You embark on a journey to much less-traveled places. You decide you'll see a lot of the world you didn't plan on seeing."
Well today I feel like the train has stopped in the Namibian desert, and on top of that, the train might be here for awhile because it needs some repairs. Nothing personal, Namibia. I'm sure yours is a beautiful country well worth visiting. It's just that I saw a National Geographic documentary on a particularly nasty Namibian drought at an impressionable age.
So I've reached this sort of "Namibian drought of the mind thing."
Let me just say here that things are by no means going "badly." It's just that Kieran was supposed to come home today per everyone all week, and I let myself get all excited, and we were told late yesterday that he is not coming home today, and most likely not this weekend, and maybe early next week.
To make a very long story short, when a Norwood procedure has to be done, a shunt has to constructed in the patient to connect the pulmonary artery to the heart. There are 2 types of shunts, the BT and the Sano. The BT is a little more narrow, which allows less overflow blood to the lungs, but can also result in disastrous blood clots if the baby become dehydrated (say, from an illness) between the Norwood and the Glenn procedure (which is done at 3-6 months of age). The Sano is a little wider, which results in more blood going to the lungs initially, but a lower risk of blood clots, and a potentially longer shunt life.
Kieran got the Sano, and since his surgery he has been having issues with too much blood going to the lungs. Now, this is in no way reflective of a bad choice on the part of the surgeon, and Kieran is doing great. His echo shows that things are working wonderfully so far with his heart. It means that once he grows into his Sano, he shouldn't need the Glenn until he's at least 4 months old.
The bad news is, because so much blood is going to his lungs, he is burning more calories because he breathes so quickly. This means that even though it looks like he might be taking in enough food for a "heart baby," he might not be getting enough vis-a-vis his respiratory rate.
So the long and short of it is, they want to keep him at the hospital longer to try to either bring down his breathing rate, or hope that he grows into his shunt a bit more and his rate comes down on its own. Either that, he'll have to eat still more, which is a challenge for HLHS babies. It all sounds good, right? Well, from a medical standpoint I suppose it does, but from a maternal standpoint, I'm sort of at the end of my rope with the hospital environment--it's been 30 days since I've been at that hospital and I can't help but feel paranoid about what feels like a super-long hospital stay (though in the HLHS world, it's not) and its effect on all of us.
The longer he stays there, the more he's exposed to everything--procedures, radiation, continuous medical equipment/monitoring, germs from the billion people that come in every day (and our room is shared with another baby and couple, who bring in friends and family). The longer he stays there, the more he's missing out on the "normal kid stuff," like going in a stroller, car, bouncy seat, sunlight, just plain change of scenery. The more he stays there, the more blood work and x-rays and routine stuff they do everyday he has to go through.
And I think me and Shawn are starting to crack a little. I think we're a little frustrated with this cycle of "adjust drugs, test for how he's reacting, the tests upset him and tire him out, then he's too tired to eat as much, so let's adjust his meds again and see if that helps..." etc.
I think there's a point where a lengthy hospital stay has the potential to become detrimental to overall family health and wellbeing and I think we're kind of reaching that point. I honestly don't see what they expect to accomplish in the hospital that we couldn't do at home. We've done all our home monitoring training. We have all the equipment. We live within driving distance of the hospital and will be going there every 2 weeks for follow up appointments.
But no.
I advocated, but in the end, my maternal concerns don't trump the medical team's, obviously, and so we are still one home sans baby.
So yeah, here I am being very glad and very grateful Kieran is doing as well as he is, and trying to be glad and grateful for the care he's receiving and the caution of the medical team(s), but I am fighting maternal instincts that're screaming, "he should come home now!!!!!!!"
On top of that I'm stressed and feeling totally out of control and unsure of how much more bonding I can possibly do with Kieran with respect to the CONSTANT interruptions and lack of privacy and traumatic events (like I how I'd just sat down to pump yesterday when some lab tech came into the room, whipped the curtain to our side of the room open, and announced it was time for his blood draw...which resulted in him having screaming fits, heart rate going up, breathing went nuts, and here I was in the corner unable to go console him because my uncoverred boobs are attached to some $)*@ machine and spurting milk everywhere, which all resulted in everyone and their mother pouring into the room to see what was wrong. This is my life right now.).
Alright, so here I am in the Namibian drought, trying to enjoy the scenery but knowing all this craziness is going on with the starving lions prowling around and the train broken down and no one listening to my views on how to fix it. Might as well have an espresso or something...oh wait, it's a drought. No water for the espresso machine. Duh.
September 5, 2008
So, remember way back when I compared our journey with Kieran's HLHS to travel? I did it because I know travel, I love travel, and travel implies uncharted territory and adventure. Originally I said something to the effect of, "imagine you've always wanted to go to Paris. You get your passport and buy your ticket, and suddenly life denies you a French visa. It suddenly seems like everyone has been to, or is going to go, Paris but you. The plane filled with happy Parisian-goers takes off without you. But suddenly the airline compensates you by giving you free airline miles instead, and you decide to use them towards a new adventure. You embark on a journey to much less-traveled places. You decide you'll see a lot of the world you didn't plan on seeing."
Well today I feel like the train has stopped in the Namibian desert, and on top of that, the train might be here for awhile because it needs some repairs. Nothing personal, Namibia. I'm sure yours is a beautiful country well worth visiting. It's just that I saw a National Geographic documentary on a particularly nasty Namibian drought at an impressionable age.
So I've reached this sort of "Namibian drought of the mind thing."
Let me just say here that things are by no means going "badly." It's just that Kieran was supposed to come home today per everyone all week, and I let myself get all excited, and we were told late yesterday that he is not coming home today, and most likely not this weekend, and maybe early next week.
To make a very long story short, when a Norwood procedure has to be done, a shunt has to constructed in the patient to connect the pulmonary artery to the heart. There are 2 types of shunts, the BT and the Sano. The BT is a little more narrow, which allows less overflow blood to the lungs, but can also result in disastrous blood clots if the baby become dehydrated (say, from an illness) between the Norwood and the Glenn procedure (which is done at 3-6 months of age). The Sano is a little wider, which results in more blood going to the lungs initially, but a lower risk of blood clots, and a potentially longer shunt life.
Kieran got the Sano, and since his surgery he has been having issues with too much blood going to the lungs. Now, this is in no way reflective of a bad choice on the part of the surgeon, and Kieran is doing great. His echo shows that things are working wonderfully so far with his heart. It means that once he grows into his Sano, he shouldn't need the Glenn until he's at least 4 months old.
The bad news is, because so much blood is going to his lungs, he is burning more calories because he breathes so quickly. This means that even though it looks like he might be taking in enough food for a "heart baby," he might not be getting enough vis-a-vis his respiratory rate.
So the long and short of it is, they want to keep him at the hospital longer to try to either bring down his breathing rate, or hope that he grows into his shunt a bit more and his rate comes down on its own. Either that, he'll have to eat still more, which is a challenge for HLHS babies. It all sounds good, right? Well, from a medical standpoint I suppose it does, but from a maternal standpoint, I'm sort of at the end of my rope with the hospital environment--it's been 30 days since I've been at that hospital and I can't help but feel paranoid about what feels like a super-long hospital stay (though in the HLHS world, it's not) and its effect on all of us.
The longer he stays there, the more he's exposed to everything--procedures, radiation, continuous medical equipment/monitoring, germs from the billion people that come in every day (and our room is shared with another baby and couple, who bring in friends and family). The longer he stays there, the more he's missing out on the "normal kid stuff," like going in a stroller, car, bouncy seat, sunlight, just plain change of scenery. The more he stays there, the more blood work and x-rays and routine stuff they do everyday he has to go through.
And I think me and Shawn are starting to crack a little. I think we're a little frustrated with this cycle of "adjust drugs, test for how he's reacting, the tests upset him and tire him out, then he's too tired to eat as much, so let's adjust his meds again and see if that helps..." etc.
I think there's a point where a lengthy hospital stay has the potential to become detrimental to overall family health and wellbeing and I think we're kind of reaching that point. I honestly don't see what they expect to accomplish in the hospital that we couldn't do at home. We've done all our home monitoring training. We have all the equipment. We live within driving distance of the hospital and will be going there every 2 weeks for follow up appointments.
But no.
I advocated, but in the end, my maternal concerns don't trump the medical team's, obviously, and so we are still one home sans baby.
So yeah, here I am being very glad and very grateful Kieran is doing as well as he is, and trying to be glad and grateful for the care he's receiving and the caution of the medical team(s), but I am fighting maternal instincts that're screaming, "he should come home now!!!!!!!"
On top of that I'm stressed and feeling totally out of control and unsure of how much more bonding I can possibly do with Kieran with respect to the CONSTANT interruptions and lack of privacy and traumatic events (like I how I'd just sat down to pump yesterday when some lab tech came into the room, whipped the curtain to our side of the room open, and announced it was time for his blood draw...which resulted in him having screaming fits, heart rate going up, breathing went nuts, and here I was in the corner unable to go console him because my uncoverred boobs are attached to some $)*@ machine and spurting milk everywhere, which all resulted in everyone and their mother pouring into the room to see what was wrong. This is my life right now.).
Alright, so here I am in the Namibian drought, trying to enjoy the scenery but knowing all this craziness is going on with the starving lions prowling around and the train broken down and no one listening to my views on how to fix it. Might as well have an espresso or something...oh wait, it's a drought. No water for the espresso machine. Duh.
Going back in Time: Norwood and hospital stay
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
August 26, 2008
Yay, so, Kieran MOVED to the 4th floor today!!!!! Whoohoo! He had his echocardiogram today and they said everything looks SPECTACULAR! Oh man. I am so exhausted!!!!!!!!!!!!!!! The time can really fly spending time with him...before you know it, oh, 19 hrs have flown by...but then when you leave the hospital (like now), it all catches up with you. Well, I am super-excited he is one step closer to home, but the PICU nurses really did grow on me, and I actually found myself getting a little emotional saying goodbye to them today Maybe it can partially be chalked up to post-partum hormones, but really, they took such good care of Kieran and really went out of their way to interact with him and make him comfortable. Up on 4th, we'll be transitioning to home care. That means me and Shawn will get a lot of training before we can take him home--ie, pediatric CPR, how to weigh him and monitor his oxygen, mix his special milk/high calorie formula combo, and basically whatever else we have to do to keep him healthy at home. It's a little overwhelming. He "has" to be woken up every 3 hrs to eat since he has so much catching up to do--so guess who has to wake up too?? Mom and Dad! Thus all the exhaustion.
August 26, 2008
Yay, so, Kieran MOVED to the 4th floor today!!!!! Whoohoo! He had his echocardiogram today and they said everything looks SPECTACULAR! Oh man. I am so exhausted!!!!!!!!!!!!!!! The time can really fly spending time with him...before you know it, oh, 19 hrs have flown by...but then when you leave the hospital (like now), it all catches up with you. Well, I am super-excited he is one step closer to home, but the PICU nurses really did grow on me, and I actually found myself getting a little emotional saying goodbye to them today Maybe it can partially be chalked up to post-partum hormones, but really, they took such good care of Kieran and really went out of their way to interact with him and make him comfortable. Up on 4th, we'll be transitioning to home care. That means me and Shawn will get a lot of training before we can take him home--ie, pediatric CPR, how to weigh him and monitor his oxygen, mix his special milk/high calorie formula combo, and basically whatever else we have to do to keep him healthy at home. It's a little overwhelming. He "has" to be woken up every 3 hrs to eat since he has so much catching up to do--so guess who has to wake up too?? Mom and Dad! Thus all the exhaustion.
Going back in Time: Kieran's birth
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
August 2008
Well, hello world, Kieran is here!!!!! Yep, he was born at 7:20 pm...to one of the biggest b-day parties ever, I think, as there were about 25 drs and students in the room Everyone came flying in at the last minute, as labor wasn't getting anywhere...until all of a sudden it happened all at once...the atmosphere was very positive and he looked great when he came out!!!!!
We got to hold him for about 2 min before they took him to the NICU. He was doing so well on the 1st day I even got to breastfeed him, but since then he's been too tired to do it again. We've been able to hold him a few times. He is a super snuggly baby. In fact, he likes being held so much, that when we have to put him back in his little bed, he gets very upset. Last night he got so worked up that he couldn't calm down and he had to be given some morphine. Luckily, today he is back up to doing really well...but it was scary for me to see firsthand how his heart condition can escalate normal baby behavior into a medical situation. Other than that, he has been doing great, and he's strong and unbelievably cute!
We're not sure when his heart surgery will be but I'll update everyone when I find out...we can't use cell phones in the NICU (can't even have them on even if they're on silent) so I haven't been able to call anyone other than 2 people so far...when I'm not in the NICU, I'm tryng to master the art of pumping breastmilk every 3 hrs around the clock, and when I'm not doing that, I'm sleeping! I just keep telling myself that no matter how difficult it is this period will not last forever and soon I'll be recovered and functional and same with Kieran...Shawn is doing a great job basically keeping things together and taking care of prescriptions and a billion other things, and is spending the day with Kieran today since "mommy" was told she needed to spend a day away from the hospital for her own health! But mostly we just absolutely love our little guy and thanks everyone for all the messages and thoughts and prayers!!!
August 2008
Well, hello world, Kieran is here!!!!! Yep, he was born at 7:20 pm...to one of the biggest b-day parties ever, I think, as there were about 25 drs and students in the room Everyone came flying in at the last minute, as labor wasn't getting anywhere...until all of a sudden it happened all at once...the atmosphere was very positive and he looked great when he came out!!!!!
We got to hold him for about 2 min before they took him to the NICU. He was doing so well on the 1st day I even got to breastfeed him, but since then he's been too tired to do it again. We've been able to hold him a few times. He is a super snuggly baby. In fact, he likes being held so much, that when we have to put him back in his little bed, he gets very upset. Last night he got so worked up that he couldn't calm down and he had to be given some morphine. Luckily, today he is back up to doing really well...but it was scary for me to see firsthand how his heart condition can escalate normal baby behavior into a medical situation. Other than that, he has been doing great, and he's strong and unbelievably cute!
We're not sure when his heart surgery will be but I'll update everyone when I find out...we can't use cell phones in the NICU (can't even have them on even if they're on silent) so I haven't been able to call anyone other than 2 people so far...when I'm not in the NICU, I'm tryng to master the art of pumping breastmilk every 3 hrs around the clock, and when I'm not doing that, I'm sleeping! I just keep telling myself that no matter how difficult it is this period will not last forever and soon I'll be recovered and functional and same with Kieran...Shawn is doing a great job basically keeping things together and taking care of prescriptions and a billion other things, and is spending the day with Kieran today since "mommy" was told she needed to spend a day away from the hospital for her own health! But mostly we just absolutely love our little guy and thanks everyone for all the messages and thoughts and prayers!!!
Going back in Time: The Diagnosis
I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!
Tuesday, March 25, 2008
I’m not very good at keeping secrets...I can keep them for other people, but I burst at the seams when it involves something in my own life, and I’ve decided to come out of the ultrasound closet (now that I’ve had 3 in the past few days). There are some people we aren’t ready to talk about this with yet because they require a different handling (nosy neighbors, employers, etc) but as far as friends and family go, I don’t want to leave anyone in the dark, even though I can’t control how people will respond, I think it’s better to get it out there and let those who want to be involved be involved in some way. This is going to be on the long side, because in a few short days our lives have changed forever in ways we never expected.
Ok, so, at first it’s going to sound like a lot of very bad news but there’s a lot of very good news too. Some of the good news is that our baby boy is a womb maniac, cracking up all the dr’s and ulrasound techs with his antics and the fact that he likes to punch me a lot. And wave his hands about. And flip around whenever they try to take his pictures. The very good news is that the right side of his heart is doing very well, and he seems to have no other problems other than the Big Issue.
Imagine you’re on the train to Babyville for the first time, and you’re seeing all sorts of new and exciting things..you’re picking out the theme you want for their room...registering for cute Pooh sleepers...when all of a sudden your Babyville train slams to a halt, brakes screeching, cars crashing into each other, and you have to get off the train and get onto a new train to Babyville. This train has a much more perilous route--sort of like in Polar Express. This new train is going to have a lot more stops, too, remote locations where few have gone and have many tests to pass and trials to overcome before you get back on and eventually reach your destination.
That’s what it felt like, when our ultrasound tech on Thurs seemed to be gone forever, and when the door re-opened, our dr walked in instead of the tech. We heard things like "something with the heart" "could be nothing" "referring you to a specialist" "go ASAP."
Fri: a surprise snowstorm hits WI and we are stranded 3 cars behind an overturned semi blocking the entire highway...Good Fri...the specialist and his team stay late to meet us and tell us the diagnosis. "Random and spontaneous event" "very serious" "nothing you did or didn’t do" "left side of heart not developed" "called hypoplastic left heart syndrome" "fatal unless open heart surgery performed within a few days of birth."
Suddenly questions like "What should I register for?" turned to "Will I come home to an empty baby room?" and "What type of birth should we have?" turned into "Will I get to hold our baby before he goes in for surgery?" and "How long will he have to stay in the hospital?" "Are my parents going to be disappointed that their long-awaited first grandchild might not survive...or will have long-term medical issues?"
Then all the spiritual issues hit..."Why?" I have always thought that nothing tests people’s faith like the question of babies and children suffering and dying. When it’s your own child, those feelings and sentiments are magnified intensely. It was a most difficult weekend because we got few answers last week, but the dr’s really gave us the greatest Easter present of all--a better chance of survival, because HLHS diagnosed in utero means a better survival rate than not diagnosed until birth.
Today, we got a lot of hopeful news. We met with an infant cardiologist who said our baby is a candidate for a 3-stage surgical process which changes the blood flow system and kind of switches the sides of the heart. I don’t mean to say it’s easy or straightforward--it’s one of the most complicated surgeries out there. The very good news is that Children’s Hosp in Milw has the best outcome rate for this type of surgery in the country--how’s that for coincidence?! He will have to go into surgery 3-8 days after birth. He will not be coming home before surgery, and will most likely be in the hospital 4-8 weeks after birth, at the minimum. After that, he will need lifelong monitoring and medications, but luckily that should taper off to apts every 6 months or so eventually. He may need a heart transplant at any time in his life.
More good news is that I have a lot of family and friends around Children’s Hosp that I can stay with for those hospital periods. More goods news--when Shawn or I or most of you were born, the chances of survival for this condition were...guess what...zero. Absolutely zero. There were no survivors of this condition before the 1980’s. Nowadays, a child with HLHS has a 75% chance of making it to 5 years of age. Today, many of these kids can live very good qualities of life.
It’s all been very overwhelming, and imagine all the new people in our life...suddenly we need a perinatologist, infant cardiologist, medical social worker (Shawn majored in medical social work, so luckily he understands what that person will be doing), surgeons, anesthesiologist, pediatrician, medical equipment for home monitoring...how are we going to pay for all this?!?!
It’s a long road ahead and filled with many possibilities and unknown outcomes, and I very much appreciate everyone we know keeping us all in your thoughts and prayers...one of our friends had her entire church praying for us on Sun, which was really nice and amazing. We think if he can live, he will be an incredible blessing to us, our families, and those around us. These are truly miracle babies. Oh, and more good news is this: I don’t have to modify anything about the pregnancy itself (other than all the extra tests and dr’s apts) because he’s fine where he is until birth. Therefore, they’re still letting us do the natural birth thing and such!!
I will keep everyone posted and probably start a separate blog on this issue. Mostly, we just want everyone to still be happy for us and happy about the baby, and treat his life with the welcome we would give any baby entering this world. We don’t want to let this "thing" rob us of our joy, or "abnormalize" our experience any more than we absolutely have to. I wish I could tell everyone more about HLHS, but not a whole lot is known about it. The best place to look is just at the little info there is online--and don’t forget to look at the success stories out there!
Tuesday, March 25, 2008
I’m not very good at keeping secrets...I can keep them for other people, but I burst at the seams when it involves something in my own life, and I’ve decided to come out of the ultrasound closet (now that I’ve had 3 in the past few days). There are some people we aren’t ready to talk about this with yet because they require a different handling (nosy neighbors, employers, etc) but as far as friends and family go, I don’t want to leave anyone in the dark, even though I can’t control how people will respond, I think it’s better to get it out there and let those who want to be involved be involved in some way. This is going to be on the long side, because in a few short days our lives have changed forever in ways we never expected.
Ok, so, at first it’s going to sound like a lot of very bad news but there’s a lot of very good news too. Some of the good news is that our baby boy is a womb maniac, cracking up all the dr’s and ulrasound techs with his antics and the fact that he likes to punch me a lot. And wave his hands about. And flip around whenever they try to take his pictures. The very good news is that the right side of his heart is doing very well, and he seems to have no other problems other than the Big Issue.
Imagine you’re on the train to Babyville for the first time, and you’re seeing all sorts of new and exciting things..you’re picking out the theme you want for their room...registering for cute Pooh sleepers...when all of a sudden your Babyville train slams to a halt, brakes screeching, cars crashing into each other, and you have to get off the train and get onto a new train to Babyville. This train has a much more perilous route--sort of like in Polar Express. This new train is going to have a lot more stops, too, remote locations where few have gone and have many tests to pass and trials to overcome before you get back on and eventually reach your destination.
That’s what it felt like, when our ultrasound tech on Thurs seemed to be gone forever, and when the door re-opened, our dr walked in instead of the tech. We heard things like "something with the heart" "could be nothing" "referring you to a specialist" "go ASAP."
Fri: a surprise snowstorm hits WI and we are stranded 3 cars behind an overturned semi blocking the entire highway...Good Fri...the specialist and his team stay late to meet us and tell us the diagnosis. "Random and spontaneous event" "very serious" "nothing you did or didn’t do" "left side of heart not developed" "called hypoplastic left heart syndrome" "fatal unless open heart surgery performed within a few days of birth."
Suddenly questions like "What should I register for?" turned to "Will I come home to an empty baby room?" and "What type of birth should we have?" turned into "Will I get to hold our baby before he goes in for surgery?" and "How long will he have to stay in the hospital?" "Are my parents going to be disappointed that their long-awaited first grandchild might not survive...or will have long-term medical issues?"
Then all the spiritual issues hit..."Why?" I have always thought that nothing tests people’s faith like the question of babies and children suffering and dying. When it’s your own child, those feelings and sentiments are magnified intensely. It was a most difficult weekend because we got few answers last week, but the dr’s really gave us the greatest Easter present of all--a better chance of survival, because HLHS diagnosed in utero means a better survival rate than not diagnosed until birth.
Today, we got a lot of hopeful news. We met with an infant cardiologist who said our baby is a candidate for a 3-stage surgical process which changes the blood flow system and kind of switches the sides of the heart. I don’t mean to say it’s easy or straightforward--it’s one of the most complicated surgeries out there. The very good news is that Children’s Hosp in Milw has the best outcome rate for this type of surgery in the country--how’s that for coincidence?! He will have to go into surgery 3-8 days after birth. He will not be coming home before surgery, and will most likely be in the hospital 4-8 weeks after birth, at the minimum. After that, he will need lifelong monitoring and medications, but luckily that should taper off to apts every 6 months or so eventually. He may need a heart transplant at any time in his life.
More good news is that I have a lot of family and friends around Children’s Hosp that I can stay with for those hospital periods. More goods news--when Shawn or I or most of you were born, the chances of survival for this condition were...guess what...zero. Absolutely zero. There were no survivors of this condition before the 1980’s. Nowadays, a child with HLHS has a 75% chance of making it to 5 years of age. Today, many of these kids can live very good qualities of life.
It’s all been very overwhelming, and imagine all the new people in our life...suddenly we need a perinatologist, infant cardiologist, medical social worker (Shawn majored in medical social work, so luckily he understands what that person will be doing), surgeons, anesthesiologist, pediatrician, medical equipment for home monitoring...how are we going to pay for all this?!?!
It’s a long road ahead and filled with many possibilities and unknown outcomes, and I very much appreciate everyone we know keeping us all in your thoughts and prayers...one of our friends had her entire church praying for us on Sun, which was really nice and amazing. We think if he can live, he will be an incredible blessing to us, our families, and those around us. These are truly miracle babies. Oh, and more good news is this: I don’t have to modify anything about the pregnancy itself (other than all the extra tests and dr’s apts) because he’s fine where he is until birth. Therefore, they’re still letting us do the natural birth thing and such!!
I will keep everyone posted and probably start a separate blog on this issue. Mostly, we just want everyone to still be happy for us and happy about the baby, and treat his life with the welcome we would give any baby entering this world. We don’t want to let this "thing" rob us of our joy, or "abnormalize" our experience any more than we absolutely have to. I wish I could tell everyone more about HLHS, but not a whole lot is known about it. The best place to look is just at the little info there is online--and don’t forget to look at the success stories out there!
Friday, May 8, 2009
I'm Finally Doing This...
Starting a blog about my life as a mom of a son with HLHS, that is. I have to strive to make this my own space, and not a page about my child's journey per se. Some of the best travel advice I've ever received came from an HLHS dad who said of his daughter, "HLHS is her journey, not ours. Our journey is to be her parents."
Every day, I have to remind myself that HLHS is not my journey. I cannot live Kieran's life, and I cannot take on what he has to. But I can embrace my role as his parent.
Part of my journey is the desire to give hope to others along the way. My experiences traveling and living abroad have equipped me for my journey into the unknown and the less-visited areas on the parenthood map. My geographical travels have taught me that life is all about experiences and relationships; that it's not what you take (baggage), but what you take with you (experience, widsom, understanding). And of course, what you give.
A true traveler knows the journey never ends. That if you let it, the journey will continue to take you to places of surprise, coincidence, reflection, and meaning.
If I can make a difference in someone's life, I consider life worth living. I am thankful that I was able to help make a difference recently. I did not do it single-handedly, but that doesn't matter at all; in fact, I was glad to be in solidarity with other HLHS parents.
That's not to say that this blog is necessarily going to be all about hope and optimism. Watching Michael J. Fox's new show recently, Adventures of an Incurable Optimist, I wondered yet again why many of my friends think of me as an optimist. I am way too critical to be a true optimist. And way too honest. But I believe, in the HLHS community optimistic honesty is a virtue that is truly valued and appreciated.
No, this blog does not have pretenses at being a source of seasoned wisdom or a panacea for the many difficult issues parents of kids with HLHS face. Rather, it is the story of my own journey, which is a learning process, an online space I've finally created for myself on this pilgrimage.
Every day, I have to remind myself that HLHS is not my journey. I cannot live Kieran's life, and I cannot take on what he has to. But I can embrace my role as his parent.
Part of my journey is the desire to give hope to others along the way. My experiences traveling and living abroad have equipped me for my journey into the unknown and the less-visited areas on the parenthood map. My geographical travels have taught me that life is all about experiences and relationships; that it's not what you take (baggage), but what you take with you (experience, widsom, understanding). And of course, what you give.
A true traveler knows the journey never ends. That if you let it, the journey will continue to take you to places of surprise, coincidence, reflection, and meaning.
If I can make a difference in someone's life, I consider life worth living. I am thankful that I was able to help make a difference recently. I did not do it single-handedly, but that doesn't matter at all; in fact, I was glad to be in solidarity with other HLHS parents.
That's not to say that this blog is necessarily going to be all about hope and optimism. Watching Michael J. Fox's new show recently, Adventures of an Incurable Optimist, I wondered yet again why many of my friends think of me as an optimist. I am way too critical to be a true optimist. And way too honest. But I believe, in the HLHS community optimistic honesty is a virtue that is truly valued and appreciated.
No, this blog does not have pretenses at being a source of seasoned wisdom or a panacea for the many difficult issues parents of kids with HLHS face. Rather, it is the story of my own journey, which is a learning process, an online space I've finally created for myself on this pilgrimage.
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