I have ventured into new terrain: the meat section of the grocery store. However, I don't think I'll be making a trip there very often. I had no idea what to purchase. I felt like I was in the middle of a morgue; there was a chill in there air and flesh and body parts lay all around me in a relatively sanitary, sterile atmsophere. I was shocked at how expensive the meat was. I'm so used to relatively inexpensive grains, legumes, fruits and vegetables, and dairy products.
I should back up a minute and say that Himal finally started eating meat--sort of. I do not know how to cook or store meat, so I told Esposo that he should be in charge of this area. He's up to the task--my husband loves cooking. Esposo is what we've deemed an opportunistic/non-practicing meat eater. He'll eat if it's around, he might order it once in awhile if we're out, and if I'm going to be gone for awhile, he might cook some at home. But he's not a regular carnivore, and these tendencies pre-date our relationship.
When my brother was living in Budapest and I visited him, we went to his girlfriend's ancestral home in rural Hungary. There, her vegetarian mother cooked a small feast for the family, and picked at a few mushrooms while the rest of us stuffed ourselves (I was eating her chicken dish, as I can be lax with vegetarianism abroad--food offered to a guest should be eaten, as much as possible). I asked my brother's girlfriend about how one can be a vegetarian in Hungary, which seemed like such a meat-based cuisine, and she replied, "oh, she cooks meat for all of us. She just doesn't eat." Glancing at this gaunt woman who was grimacing and picking at her mushrooms, I saw this to be true.
Despite the grim portrait this scene painted in my mind, I thought I would follow her example. After I returned from Hungary, I made the Hungarian chicken dish for Esposo (who was Novio at the time), as a gesture of how highly I thought of him and how I was (symbolically) willing to make sacrifices to please him. But I think my attempt scared Esposo more than anything.
Thus, that was the one and only time I've cooked meat (other than seafood and eggs, which I will cook). Fast-forward several years, and we have a toddler in our midst, a toddler with a heart condition that makes his red blood/iron count on the low side to begin with. I started wondering if Himal was getting enough iron in his diet, as he tends to refuse almost all animal protein. Of course, I've been careful to include iron-fortified foods in his diet, but I still wondered if it was enough. I was relieved when we went to Irish Fest last weekend, and Himal chowed down on a corndog, corned beef, and a chicken strip. I thought this might be the completion of a diet that is otherwise extremely healthy. Until he got sick...along with Esposo. They have since been suffering from stomach "bugs" whereas I've been spared--was it the meat they ate?
Nevertheless, I chugged on in this terra nova--right into the meat section of a local store yesterday. But I ran into immediate confusion--looking at the nutritional information--4% of one's daily iron in this serving of chicken?! What?! When Rice Krispies have 50% ?!!! Why in the world would I spent so much money on chicken if it's not worth the nutritional bang for the buck? Sure, I could splurge on a more iron-rich meat, but what toddler really eats steak? Who dares to eat liver these days, the organ meat that stores all the pesticides the animal has eaten? This is not making sense to me...are people aware of the nutritional value of meats opposed to grains, legumes, veggies? All my life, carnivores have lectured me on the merits of eating meat...but I don't see their views bearing out on the labels.
Esposo also made the point that maybe Himal doesn't like "meat" yet, but the salty taste that imbued the hotdog, corned beef, etc that he ate at the festival. "Hm," I mused. If I remember 23 years or so back, I might be able to recall what a hotdog tastes like, but I've never had corned beef. I thought a nice transition would be to buy some "chicken strips." I baked them last night, but Himal refused to eat them.
This morning, I wondered what to do with the leftover chicken, and decided to make fried rice--a toddler staple around here. It's easy, it includes several food groups in one dish. I fried up some veggies and egges--standard for fried rice. I made the rice. I cut up the chicken...and then I remembered the Old Testament admonition about not cooking a lamb in its mother's milk. I don't know if it's the same thing or not--serving a grown hen in the same dish as an egg, but it reminded me of just how much I was venturing into unfamiliar ethics. I remember reading that verse in high school, when I was dating the son of a Lutheran pastor. I asked my then-boyfriend what the verse meant, and he said, "well, it's just obvious. It's unethical." But it raised so many questions in my mind--did that mean, according to the Bible, that animals have family bonds that should be respected? I still wonder about that verse.
I tend to respect meat eaters who have the courage to raise/hunt, and slaughter and process their own animals. I think if you're going to be a meat-eater, you should be willing to do that--otherwise, how will you have an accurate picture of what meat eating really is--if you always let someone else do the dirty work for you? If you give an animal a good life, and kill and eat it, I think that's awesome. If you go to the grocery store and pick out factory-farmed meat that has been raised in terrible conditions, that an undocumented, underpaid foreign worker has slaughtered and cleaned up for you in dangerous conditions, if all you ever see is the nicely-packaged meat without all the exploitation and sacrifice...I'm sorry, but I don't have a whole lot of respect for that food choice. I don't know how we're going to negotiate getting some meat into Himal's diet...I figured that sooner or later, he would go after it himself, and then we would do our best to supply him with good quality/humanely-raised meats from then on. Maybe he's not there yet. But this has been something of a practice run.
Thursday, August 26, 2010
Wednesday, July 21, 2010
A Question of Wills
As Himal's 2nd birthday draws nigh, I've been thinking a lot about parenting lately. There are a couple of blog posts I've been wanting to write for awhile now, but like all my heady summer thoughts, they seem fragmented. I've reflected a lot on what the past year has taught me, all the hard-won lessons I've learned, and how my pespective has changed over the past year.
In the past, I've written about choice and free will, mentioning that despite our free will, there's a lot we don't get to "choose" in this life. I cited our birth families as an example. But, the more I think about it, the more I wonder if there is more of a cosmic roll call going on than we realize.
I remember when I first got to Nepal and was to live with a host family. Our program director, Manohari, had a mind-boggling list of families who had bravely volunteered to host an American college student of unknown character and hygiene. A few families had specified whether they wanted a male or female student to share their home, but other than that, there were no qualifications. I listened attentively as Manohari went down the list. I hadn't realized there would be some degree of choice involved, so I hadn't come up with any particular attributes I'd like my host family to have. The list went on and on, and still no family seemed quite right to me. After Manohari read each description, one or another of my 23 colleagues would jump on it. As he approached, the bottom, I felt a growing apprehension that I wouldn't find a suitable match.
Then, towards the very end, I heard this: "An ethnic Limbu family from the eastern hills living in Dhumbarahi. Extended family living situation involving a mom and her 2 girls and 1 boy, an aged grandmother, an auntie and uncle with a 3 year old boy, and several other people living both upstairs and downstairs. The father is away, working in Hong Kong." My hand shot up and I rushed to the front to sign my name on that line. I had found my perfect family, and perfect they were. I'm wondering lately if something similar occurs on a more spiritual level.
Today a neighbor came over with her 6-month old son. I'd never met her before, but I had many of Himal's baby clothes and toys to give her. As she entered our home, the difference between life with her child and life with my child was astounding. She nonchalantly mentioned that her husband was home "deathly ill," and the heart parental red flag went up...the unspoken code that You Do Not Come Over If There Is Illness in the Family flag. But, I sighed internally and let it go--after all, she doesn't know. Then, she proceeded to tell me that her pregnancy was completely unplanned, and she didn't even know she was pregnant until the 3rd trimester. The thoughts came washing over me in an unwanted tide...those thoughts that I try so hard to repress. But think about it--if you were me, wouldn't you think them too?! The thoughts that we had planned Himal's pregnancy so carefully and done everything "right," but he has HLHS. The thoughts that this woman didn't even know she was pregnant, didn't want children at all, and--surprise!--gave birth to a perfectly healthy baby like magic.
I looked at the baby, who was an adorable boy. At 6 months, he already weighs 18 lb (Himal is almost 2 and weighs 25 lb). The 6 month old is almost in 12 months clothes. He sits up on his own and is almost standing up on his own. The difference between the 2 experiences couldn't be greater.
Sometimes it's hard to comprehend. It's hard to comprehend why some people try so hard to have kids and can't, whereas others have kids they didn't plan or even want. But, as I looked at this mom and baby, I got the impression that having her son had completely changed her life around. There was no question that she loved her son and was a good mom to him. She might not be like me and her priorities were certainly very different, but I've come to believe that both of our sons have completely changed us internally.
I marvel at how she didn't *know.* I knew...I mean, really knew...that I was pregnant even before an early detection test would work. I bought the earliest detection test on the market and took it days before it said it would work, and the faintest pink line confirmed my knowledge. I *knew* Himal was a boy even though my family and friends all guessed he was a girl. I knew, deep down, that there was something wrong with him, despite everyone around me insisting things were fine and that all expectant moms share this worry. And I also knew that he really wanted to be born and be given every chance to fight.
And this brings me to the crux of this post. I was chatting online with a fellow heart mom a couple weeks ago--a heart mom who was asking some heavy questions about faith and God. I brought up a train of thought I've been wondering about lately. Our culture places a huge emphasis on controlling one's own destiny, exercising our individual rights, and asserting our free will. Modern Christianity also is a big proponent of the idea of "free will." And yet, our notion of "free will" seems so violated when a traumatic event happens in our lives. We didn't "choose" this--we didn't choose to give our son HLHS, and he didn't choose to be born with it...right?
Wait a second. Maybe...we did? And I'm not talking about in the Garden of Eden, when humanity chose to know good and evil alike. God knows us better than we know ourselves. He knew our souls even before we were born on this earth.
Someday, when Himal is say, 16 or so, he might scream at me, "why was I even born?! I didn't ask to be born!" But I know better. I, as his mom, *knew.* Sometimes, we parents know our kids better than they know themselves. Sometimes we remember things that for them are deeply buried in their blurry subconcious. I might then say, "I knew you before you were even born. And at that time, you told me you wanted to be born and live this life."
What if I, before I was born into this earthly body and forgot what came before, volunteered to be a mom to a child with HLHS? I can just see God calling for volunteers. Maybe volunteering is different than raw choice.
Even Jesus, who volunteered to lay down His life for humankind, seemed to have momentary forgetfulness in Gesthemane, when He begged God to take away the cup He had to drink. But God said, "I know better. I remember. You volunteered to do this."
I'm not saying I'm a god of any sort. I'm merely saying that there may be Biblical precedent for this idea.
Countless times I've heard parents talking about how their heart kids seem otherwordly, almost as if they have a more direct connection to the Divine. I've heard stories of heart kids having premonitions and heavenly messages that, if I didn't know the parent were telling the truth, I'm not sure I would believe. I've heard parents talk about some of the things their heart kids have said about God and heaven, and these things are way beyond their years and even way beyond most people's spiritual understanding. I've heard other (as we call them, "heart healthy") parents say to parents like me, "God chose to give you this child because He knew your faith would be strong enough to be their parent." But "choosing" to give us this situation...is that like God? Maybe yes, maybe no. What about Himal? He didn't "chose" this...or...is it possible that God called for volunteers and he stepped up?
I can actually picture it so perfectly.
God: I need a few special souls to be born with heart defects. You're going to have to go through operations and countless procedures and feel immeasurable pain. Everyday things will often be a struggle for you. You might not live very long. But the payoff far outweighs all that. You are going to touch a whole lot more lives than you ever dreamed. You're going to give people hope and you're going to be loved more than you can even bear it. You're going to know what really matters, and your going to show it to others. You're going to meet the most amazing people, the faces of determination and dedication, such as pediatric cardiologists and physical therapists and other special people who take interest in you and protect you. And I'll even throw this into the deal: I am going to keep you close to me, under my wing and especially tight in my palm, because I know you're going to need me a lot (and that's a good thing).
Himal (and several other voices in a chorus): ok, I think I can do that. Sounds like a pretty big adventure. Sign me up, then.
I think this is a pretty radical idea as far as Christianity goes, and maybe it's even a bit of a stupid idea. To go around saying that we chose our general lot but forgot? I don't think most religious folks would really accept it or acknowledge much Biblical basis for it other than what I've outlined. In fact, some would probably say this entire post is an indication that I'm getting way off-base, and need to start attending church again so that my spiritual ideas can be tested for truth (ie, shot down) by a body of believers. What about Job, right? No warm fuzzy notions of choice there! But I don't quite feel like Job. I feel like I've been blessed, not cursed, punished, or stricken. More on that later. But because of the theological shakiness, I do feel obliged to put in a disclaimer: this is only an idea and I do not claim it to be absolute spiritual truth.
Then again, maybe we didn't choose at all. Maybe God, knowing our souls inside and out, just *knew* that we would choose this path if we could do it over again (more on this later too), having the hindsight or the greater knowledge we will eventually have, and chose for us.
In the past, I've written about choice and free will, mentioning that despite our free will, there's a lot we don't get to "choose" in this life. I cited our birth families as an example. But, the more I think about it, the more I wonder if there is more of a cosmic roll call going on than we realize.
I remember when I first got to Nepal and was to live with a host family. Our program director, Manohari, had a mind-boggling list of families who had bravely volunteered to host an American college student of unknown character and hygiene. A few families had specified whether they wanted a male or female student to share their home, but other than that, there were no qualifications. I listened attentively as Manohari went down the list. I hadn't realized there would be some degree of choice involved, so I hadn't come up with any particular attributes I'd like my host family to have. The list went on and on, and still no family seemed quite right to me. After Manohari read each description, one or another of my 23 colleagues would jump on it. As he approached, the bottom, I felt a growing apprehension that I wouldn't find a suitable match.
Then, towards the very end, I heard this: "An ethnic Limbu family from the eastern hills living in Dhumbarahi. Extended family living situation involving a mom and her 2 girls and 1 boy, an aged grandmother, an auntie and uncle with a 3 year old boy, and several other people living both upstairs and downstairs. The father is away, working in Hong Kong." My hand shot up and I rushed to the front to sign my name on that line. I had found my perfect family, and perfect they were. I'm wondering lately if something similar occurs on a more spiritual level.
Today a neighbor came over with her 6-month old son. I'd never met her before, but I had many of Himal's baby clothes and toys to give her. As she entered our home, the difference between life with her child and life with my child was astounding. She nonchalantly mentioned that her husband was home "deathly ill," and the heart parental red flag went up...the unspoken code that You Do Not Come Over If There Is Illness in the Family flag. But, I sighed internally and let it go--after all, she doesn't know. Then, she proceeded to tell me that her pregnancy was completely unplanned, and she didn't even know she was pregnant until the 3rd trimester. The thoughts came washing over me in an unwanted tide...those thoughts that I try so hard to repress. But think about it--if you were me, wouldn't you think them too?! The thoughts that we had planned Himal's pregnancy so carefully and done everything "right," but he has HLHS. The thoughts that this woman didn't even know she was pregnant, didn't want children at all, and--surprise!--gave birth to a perfectly healthy baby like magic.
I looked at the baby, who was an adorable boy. At 6 months, he already weighs 18 lb (Himal is almost 2 and weighs 25 lb). The 6 month old is almost in 12 months clothes. He sits up on his own and is almost standing up on his own. The difference between the 2 experiences couldn't be greater.
Sometimes it's hard to comprehend. It's hard to comprehend why some people try so hard to have kids and can't, whereas others have kids they didn't plan or even want. But, as I looked at this mom and baby, I got the impression that having her son had completely changed her life around. There was no question that she loved her son and was a good mom to him. She might not be like me and her priorities were certainly very different, but I've come to believe that both of our sons have completely changed us internally.
I marvel at how she didn't *know.* I knew...I mean, really knew...that I was pregnant even before an early detection test would work. I bought the earliest detection test on the market and took it days before it said it would work, and the faintest pink line confirmed my knowledge. I *knew* Himal was a boy even though my family and friends all guessed he was a girl. I knew, deep down, that there was something wrong with him, despite everyone around me insisting things were fine and that all expectant moms share this worry. And I also knew that he really wanted to be born and be given every chance to fight.
And this brings me to the crux of this post. I was chatting online with a fellow heart mom a couple weeks ago--a heart mom who was asking some heavy questions about faith and God. I brought up a train of thought I've been wondering about lately. Our culture places a huge emphasis on controlling one's own destiny, exercising our individual rights, and asserting our free will. Modern Christianity also is a big proponent of the idea of "free will." And yet, our notion of "free will" seems so violated when a traumatic event happens in our lives. We didn't "choose" this--we didn't choose to give our son HLHS, and he didn't choose to be born with it...right?
Wait a second. Maybe...we did? And I'm not talking about in the Garden of Eden, when humanity chose to know good and evil alike. God knows us better than we know ourselves. He knew our souls even before we were born on this earth.
Someday, when Himal is say, 16 or so, he might scream at me, "why was I even born?! I didn't ask to be born!" But I know better. I, as his mom, *knew.* Sometimes, we parents know our kids better than they know themselves. Sometimes we remember things that for them are deeply buried in their blurry subconcious. I might then say, "I knew you before you were even born. And at that time, you told me you wanted to be born and live this life."
What if I, before I was born into this earthly body and forgot what came before, volunteered to be a mom to a child with HLHS? I can just see God calling for volunteers. Maybe volunteering is different than raw choice.
Even Jesus, who volunteered to lay down His life for humankind, seemed to have momentary forgetfulness in Gesthemane, when He begged God to take away the cup He had to drink. But God said, "I know better. I remember. You volunteered to do this."
I'm not saying I'm a god of any sort. I'm merely saying that there may be Biblical precedent for this idea.
Countless times I've heard parents talking about how their heart kids seem otherwordly, almost as if they have a more direct connection to the Divine. I've heard stories of heart kids having premonitions and heavenly messages that, if I didn't know the parent were telling the truth, I'm not sure I would believe. I've heard parents talk about some of the things their heart kids have said about God and heaven, and these things are way beyond their years and even way beyond most people's spiritual understanding. I've heard other (as we call them, "heart healthy") parents say to parents like me, "God chose to give you this child because He knew your faith would be strong enough to be their parent." But "choosing" to give us this situation...is that like God? Maybe yes, maybe no. What about Himal? He didn't "chose" this...or...is it possible that God called for volunteers and he stepped up?
I can actually picture it so perfectly.
God: I need a few special souls to be born with heart defects. You're going to have to go through operations and countless procedures and feel immeasurable pain. Everyday things will often be a struggle for you. You might not live very long. But the payoff far outweighs all that. You are going to touch a whole lot more lives than you ever dreamed. You're going to give people hope and you're going to be loved more than you can even bear it. You're going to know what really matters, and your going to show it to others. You're going to meet the most amazing people, the faces of determination and dedication, such as pediatric cardiologists and physical therapists and other special people who take interest in you and protect you. And I'll even throw this into the deal: I am going to keep you close to me, under my wing and especially tight in my palm, because I know you're going to need me a lot (and that's a good thing).
Himal (and several other voices in a chorus): ok, I think I can do that. Sounds like a pretty big adventure. Sign me up, then.
I think this is a pretty radical idea as far as Christianity goes, and maybe it's even a bit of a stupid idea. To go around saying that we chose our general lot but forgot? I don't think most religious folks would really accept it or acknowledge much Biblical basis for it other than what I've outlined. In fact, some would probably say this entire post is an indication that I'm getting way off-base, and need to start attending church again so that my spiritual ideas can be tested for truth (ie, shot down) by a body of believers. What about Job, right? No warm fuzzy notions of choice there! But I don't quite feel like Job. I feel like I've been blessed, not cursed, punished, or stricken. More on that later. But because of the theological shakiness, I do feel obliged to put in a disclaimer: this is only an idea and I do not claim it to be absolute spiritual truth.
Then again, maybe we didn't choose at all. Maybe God, knowing our souls inside and out, just *knew* that we would choose this path if we could do it over again (more on this later too), having the hindsight or the greater knowledge we will eventually have, and chose for us.
Sunday, July 11, 2010
For the Record...
Raising a family, parenting, trying to keep it all straight...is hard. Few would dispute it. There's a lot to keep straight. This is the medication schedule:
8:30 am: Himal's 1st round of meds
Cat's morning pill
11:30 am: Himal's 2nd round of meds
2:30 pm: Himal's 3rd round of meds
8:30 pm: Himal's 4th round of meds
Cat's evening pill
Is it any wonder that once in awhile we realize, with horror, we've lost track of the time, or forgotten to call in a refill for 1 of many Rx's? On top of that...2 of the meds are refrigerated, so when we're not at home for one of the scheduled med times, we have to be sure to pack up a cooler and bring it with us (sometimes we realize, with horror, we've reached a destination only to have forgotten the meds at home, and have to turn back and start all over again). Keep in mind that Himal is not old enough to swallow pills, so these meds have to be made in liquid form at the pharmacy, and we in turn draw them up individually in oral syringes. We also have a pill cutter so we can give the cat her proper dose. If we spend the night somewhere, we have a lot of meds to pack up and keep cool, and we have to make arrangements to have a pet sitter come 2x/day for the kitty.
I'm not complaining...I'm just saying...as someone who could never even remember to take her birth controll pill on a daily basis, I've had to come down to earth a lot.
8:30 am: Himal's 1st round of meds
Cat's morning pill
11:30 am: Himal's 2nd round of meds
2:30 pm: Himal's 3rd round of meds
8:30 pm: Himal's 4th round of meds
Cat's evening pill
Is it any wonder that once in awhile we realize, with horror, we've lost track of the time, or forgotten to call in a refill for 1 of many Rx's? On top of that...2 of the meds are refrigerated, so when we're not at home for one of the scheduled med times, we have to be sure to pack up a cooler and bring it with us (sometimes we realize, with horror, we've reached a destination only to have forgotten the meds at home, and have to turn back and start all over again). Keep in mind that Himal is not old enough to swallow pills, so these meds have to be made in liquid form at the pharmacy, and we in turn draw them up individually in oral syringes. We also have a pill cutter so we can give the cat her proper dose. If we spend the night somewhere, we have a lot of meds to pack up and keep cool, and we have to make arrangements to have a pet sitter come 2x/day for the kitty.
I'm not complaining...I'm just saying...as someone who could never even remember to take her birth controll pill on a daily basis, I've had to come down to earth a lot.
Tuesday, July 6, 2010
Sultini
I want to be more than just a receptacle for memory
a repository for stories
a teller of truths, a chronicler,
a sifter, a winnower
But I feel like a shadowy ghost
I can build a house
windows, roof and floor
four walls and door
I can light a fire
and candles against the night
offer you a place of repose
when your thoughts take flight
But nothing more
You come to me for wisdom
when the world has hemmed you in
when it pushes on all sides
and you look to the horizon
You make me an outcast, a witch
on the edge of what you see
banished to the hovel in the forest
between the village and the sea
The house is empty, bare, unfurbished
a structure you inhabit only when you wander
then you seek me, looking for words to squander
a library, an index, the wind howls through
without you it's bare bones mi amor
and nothing more
Are you ashamed, or do you want
to keep me to yourself
your little secret not quite dirty
not quite clean, but I've
grown weary of playing the role
in which you've cast me,
teller of tales, house of words
walls windows and floor
and nothing more
so there's the door :)
a repository for stories
a teller of truths, a chronicler,
a sifter, a winnower
But I feel like a shadowy ghost
I can build a house
windows, roof and floor
four walls and door
I can light a fire
and candles against the night
offer you a place of repose
when your thoughts take flight
But nothing more
You come to me for wisdom
when the world has hemmed you in
when it pushes on all sides
and you look to the horizon
You make me an outcast, a witch
on the edge of what you see
banished to the hovel in the forest
between the village and the sea
The house is empty, bare, unfurbished
a structure you inhabit only when you wander
then you seek me, looking for words to squander
a library, an index, the wind howls through
without you it's bare bones mi amor
and nothing more
Are you ashamed, or do you want
to keep me to yourself
your little secret not quite dirty
not quite clean, but I've
grown weary of playing the role
in which you've cast me,
teller of tales, house of words
walls windows and floor
and nothing more
so there's the door :)
Thursday, May 27, 2010
The jury's still out: CHDs, "developmental delays," and nutrition
The field of pediatric cardiology is relatively new. Even newer is the treatment for HLHS. Before the 1980's there were no survivors of HLHS, and even up until the mid-90's, survival rates were depressing enough to make me not even want to think about them--only about 40% for the first surgery alone. Although all fields of medicine rapidly change, there is still so much that is unknown about CHDs in general, and HLHS in particular. As more CHD'ers reach adulthood, the story continues to unfold.
All of this can leave me pretty confused as a parent sometimes. At the same time, there's something exciting about it too: I feel like I am part of history in the making, a part of something that's really dynamic and progressing at a fast rate. And yet, there is sadness too, knowing that it is already too late for so many kids who have already passed away from the silent killers known as heart defects. Sadness that in 5, 10, or 20 years, I will see technologies that could've helped my son in a much better way.
The world seems to change quickly, and in a mere 3 decades, there's a lot I can say, "it happened in my lifetime" about. However, many of these things are reflective of tragedy and stuggle. Yet, 2 of them I can say "it happened in my lifetime" about with unabashed joy: the survival of kids with HLHS (not only survival through childhood, but into adulthood, allowing people with HLHS to go to college, marry, and even see the 1st woman with HLHS to have a child of her own) and the World Series win of the White Sox :)
Thus, things in the CHD world seem to be changing more quickly than in many other areas. Still, there are questions I discuss with other parents, sometimes with vigor. The first of these is the matter of "developmental delays." Numerous studies show that kids with CHDs are at an increased risk for delays in gross and fine motor skills, speech, and eating, as well as "behavioral problems" like ADD and OCD. The risk for these problems is much greater for single ventricle children such as my son. Yet, very few outside the CHD world seem to know this, or even acknowledge it. Even when I try to tell to people I assume would or should be aware of this (like teachers, etc), it's like I'm talking to a brick wall, and I'm told to my face that my son's condition is only physical. Unfortunately, we as a culture have stereotyped and put the terms "developmental delay" or "sensory overload" in a box (popularly) to refer to children on the autism spectrum or someone with a "learning disability." In reality, children with a wide range of medical conditions and physical ailments (especially those children who have had long hospital stays) confront these issues.
The issue is complicated. At first, it was thought the CHDs themselves caused delays in other areas, but I've heard from cardiologists that the body protects the brain before anything else, and that the heart condition itself is not the cause. One recently told me that although there are often delays in the motor and speech areas, there is no actual evidence for real cognitive delays, and that the vast majory of "heart kids" catch up to their peers by 5 years of age or so. Then it was widely believed that the surgeries themselves caused the delays. The argument, quite believable, was that being on the bypass machine at such a young age, with its accompanying need to freeze the child's brain and reduce brain activity as much as possible, was the culprit. Yet, a recent study of respected cardio-thoracic surgeons reported to Children's Hosp in Philadelphia that this did not appear to be the cause, either. So what is it, really? Our cardiologist has suggested that it could be a combination of many things, including the experiences of heart surgeries and hospital stays themselves. No one has yet mentioned the possible effect of being on multiple medications from birth, but I wonder if this could be a reason. In addition, many children with HLHS have strokes during childhood, and I always worry about the possibility than many of them are too small to be noticed or diagnosed.
In any event, this is an area of research that is being worked on all of a sudden--a hot topic in the field. A cardiologist told me last weekend that, "we're learning these days that it is not enough to save a child's life through heart surgery. We also have to be good citizens and do more to find ways for them to have a higher quality of life." I am, without a doubt, glad so many are suddenly paying attention to this subject, but again, it is a bittersweet feeling, because whatever strides are made from research will certainly come too late for my own son. Even a few years before he was born, it was still pretty fuzzy that CHDer's would need PT, OT, and speech therapy services in early childhood, so I can at least be grateful that we have had the opportunity to qualify for and get these services early via the federally-funded early intervention program.
Another issue we CHD parents face some uncertainty on is diet for our "heart kids." As if we all don't get enough mixed messages about food in our country, how much more so heart families!! On the one hand, some of our children's cardiologists and dieticians are telling us "calories! add butter! whatever it takes!" Other cardiologists and parents appear to be horrified by the suggestion, because we've been so conditioned by our very own American Heart Association that "bad fats" are, well, bad for the heart--how much more so for someone with heart disease?!
Sigh, and sigh again! First of all, I apologize for offending the sense of unity and magnamity we so like to feel in the CHD world (and who can't support Jump Rope for Heart), but AHA is not really our friend. Let's not have any illusions on that matter. I will change that statement when I see AHA devote more than 1/100th of their funding to heart disease that affects children. Secondly, with their paltry 1/100th, they claim to fund research as to the "cause" of CHDs. Seriously, AHA, others much more qualified (ie, who know *anything* about CHDs) and well-funded can do this research a lot better than you. Nevermind that specialists in the field have long discounted what you say on your very own webpage--that CHDs could be all but wiped out if women stopped pesky behaviors during pregnancy--nevermind that people who know *anything* about the field reiterate over and over again that the vast majority of heart defects happen for unknown reasons, that the vast majority of "heart moms" never used drugs or had diabetes or took class D drugs during pregnancy. And even in cases where an event happened during pregnancy that is possibly linked to having a child with CHD (having a fever, virus, strep throat, or UTI), they are things beyond an expectant mom's control, and the majority of women report they did not have these problems during pregnancy. Finally, AHA is unclear about what it's talking about on the matter of heart kid nutrition: at a conference last week for heart parents, AHA had their token stand and handed me a book of "heart-healthy recipes" for kids. "Are they for heart kids?" I asked. "No," I was told. "They're for all kids." I chucked it. "Do you know if these recipes are appropriate for heart kids, many of whom are underweight and burn a lot more calories than 'all kids?'" I asked. "Um, no." I was told.
I will be listening to my son's specialists on the matter of nutrition, as well as following common sense. First of all, toddlers need fat. They need so-called "bad fats," like whole milk, for their brain development. They need calories. Heart kids need them even more--as I said, most of them are lousy eaters, and their hearts work harder, causing them to burn more calories than the rest of us. Yet, some heart parents disagree with me. They live in such a culturally-perpetuated fear of artery-clogging (a legitimate fear, but one that should be directed at sedentary adults and schoolkids, not toddlers) that they won't put butter on their toddler's green beans or give them whole milk to drink. Then again, I'm not taking my son to McDonald's or letting him have junk food, because that's not healthy for...anyone. Likewise, as always, the rule of thumb for eating anything is *moderation.* But ice cream once in awhile? Fine. Whole milk? Fine. Butter, eggs...a couple times a week, fine. Finally, going organic with the fats is a wise idea. Pesticides are stored in body fat (and of course, collect in what acts as a filter for toxins, the liver)--in us humans as well as in animals. Animals eat pesticide-laden plant products, then store the pesticides in their fat, which is passed on to those of us who eat animal fat in the form of meat or dairy.
Oh, and of course, the jury is still out about what even causes CHDs in the first place: environment, genetics, or a complex mix of both? And to that I say, "I have no idea." We do know that people all over the world, of both sexes, are born with heart defects. We do know that certain genes have been pinpointed to heart defects. We also know that the rate of heart defects is higher in certain places, such as WI, Baltimore, and China. Or how about a 4th option: completely random chance?
All of this can leave me pretty confused as a parent sometimes. At the same time, there's something exciting about it too: I feel like I am part of history in the making, a part of something that's really dynamic and progressing at a fast rate. And yet, there is sadness too, knowing that it is already too late for so many kids who have already passed away from the silent killers known as heart defects. Sadness that in 5, 10, or 20 years, I will see technologies that could've helped my son in a much better way.
The world seems to change quickly, and in a mere 3 decades, there's a lot I can say, "it happened in my lifetime" about. However, many of these things are reflective of tragedy and stuggle. Yet, 2 of them I can say "it happened in my lifetime" about with unabashed joy: the survival of kids with HLHS (not only survival through childhood, but into adulthood, allowing people with HLHS to go to college, marry, and even see the 1st woman with HLHS to have a child of her own) and the World Series win of the White Sox :)
Thus, things in the CHD world seem to be changing more quickly than in many other areas. Still, there are questions I discuss with other parents, sometimes with vigor. The first of these is the matter of "developmental delays." Numerous studies show that kids with CHDs are at an increased risk for delays in gross and fine motor skills, speech, and eating, as well as "behavioral problems" like ADD and OCD. The risk for these problems is much greater for single ventricle children such as my son. Yet, very few outside the CHD world seem to know this, or even acknowledge it. Even when I try to tell to people I assume would or should be aware of this (like teachers, etc), it's like I'm talking to a brick wall, and I'm told to my face that my son's condition is only physical. Unfortunately, we as a culture have stereotyped and put the terms "developmental delay" or "sensory overload" in a box (popularly) to refer to children on the autism spectrum or someone with a "learning disability." In reality, children with a wide range of medical conditions and physical ailments (especially those children who have had long hospital stays) confront these issues.
The issue is complicated. At first, it was thought the CHDs themselves caused delays in other areas, but I've heard from cardiologists that the body protects the brain before anything else, and that the heart condition itself is not the cause. One recently told me that although there are often delays in the motor and speech areas, there is no actual evidence for real cognitive delays, and that the vast majory of "heart kids" catch up to their peers by 5 years of age or so. Then it was widely believed that the surgeries themselves caused the delays. The argument, quite believable, was that being on the bypass machine at such a young age, with its accompanying need to freeze the child's brain and reduce brain activity as much as possible, was the culprit. Yet, a recent study of respected cardio-thoracic surgeons reported to Children's Hosp in Philadelphia that this did not appear to be the cause, either. So what is it, really? Our cardiologist has suggested that it could be a combination of many things, including the experiences of heart surgeries and hospital stays themselves. No one has yet mentioned the possible effect of being on multiple medications from birth, but I wonder if this could be a reason. In addition, many children with HLHS have strokes during childhood, and I always worry about the possibility than many of them are too small to be noticed or diagnosed.
In any event, this is an area of research that is being worked on all of a sudden--a hot topic in the field. A cardiologist told me last weekend that, "we're learning these days that it is not enough to save a child's life through heart surgery. We also have to be good citizens and do more to find ways for them to have a higher quality of life." I am, without a doubt, glad so many are suddenly paying attention to this subject, but again, it is a bittersweet feeling, because whatever strides are made from research will certainly come too late for my own son. Even a few years before he was born, it was still pretty fuzzy that CHDer's would need PT, OT, and speech therapy services in early childhood, so I can at least be grateful that we have had the opportunity to qualify for and get these services early via the federally-funded early intervention program.
Another issue we CHD parents face some uncertainty on is diet for our "heart kids." As if we all don't get enough mixed messages about food in our country, how much more so heart families!! On the one hand, some of our children's cardiologists and dieticians are telling us "calories! add butter! whatever it takes!" Other cardiologists and parents appear to be horrified by the suggestion, because we've been so conditioned by our very own American Heart Association that "bad fats" are, well, bad for the heart--how much more so for someone with heart disease?!
Sigh, and sigh again! First of all, I apologize for offending the sense of unity and magnamity we so like to feel in the CHD world (and who can't support Jump Rope for Heart), but AHA is not really our friend. Let's not have any illusions on that matter. I will change that statement when I see AHA devote more than 1/100th of their funding to heart disease that affects children. Secondly, with their paltry 1/100th, they claim to fund research as to the "cause" of CHDs. Seriously, AHA, others much more qualified (ie, who know *anything* about CHDs) and well-funded can do this research a lot better than you. Nevermind that specialists in the field have long discounted what you say on your very own webpage--that CHDs could be all but wiped out if women stopped pesky behaviors during pregnancy--nevermind that people who know *anything* about the field reiterate over and over again that the vast majority of heart defects happen for unknown reasons, that the vast majority of "heart moms" never used drugs or had diabetes or took class D drugs during pregnancy. And even in cases where an event happened during pregnancy that is possibly linked to having a child with CHD (having a fever, virus, strep throat, or UTI), they are things beyond an expectant mom's control, and the majority of women report they did not have these problems during pregnancy. Finally, AHA is unclear about what it's talking about on the matter of heart kid nutrition: at a conference last week for heart parents, AHA had their token stand and handed me a book of "heart-healthy recipes" for kids. "Are they for heart kids?" I asked. "No," I was told. "They're for all kids." I chucked it. "Do you know if these recipes are appropriate for heart kids, many of whom are underweight and burn a lot more calories than 'all kids?'" I asked. "Um, no." I was told.
I will be listening to my son's specialists on the matter of nutrition, as well as following common sense. First of all, toddlers need fat. They need so-called "bad fats," like whole milk, for their brain development. They need calories. Heart kids need them even more--as I said, most of them are lousy eaters, and their hearts work harder, causing them to burn more calories than the rest of us. Yet, some heart parents disagree with me. They live in such a culturally-perpetuated fear of artery-clogging (a legitimate fear, but one that should be directed at sedentary adults and schoolkids, not toddlers) that they won't put butter on their toddler's green beans or give them whole milk to drink. Then again, I'm not taking my son to McDonald's or letting him have junk food, because that's not healthy for...anyone. Likewise, as always, the rule of thumb for eating anything is *moderation.* But ice cream once in awhile? Fine. Whole milk? Fine. Butter, eggs...a couple times a week, fine. Finally, going organic with the fats is a wise idea. Pesticides are stored in body fat (and of course, collect in what acts as a filter for toxins, the liver)--in us humans as well as in animals. Animals eat pesticide-laden plant products, then store the pesticides in their fat, which is passed on to those of us who eat animal fat in the form of meat or dairy.
Oh, and of course, the jury is still out about what even causes CHDs in the first place: environment, genetics, or a complex mix of both? And to that I say, "I have no idea." We do know that people all over the world, of both sexes, are born with heart defects. We do know that certain genes have been pinpointed to heart defects. We also know that the rate of heart defects is higher in certain places, such as WI, Baltimore, and China. Or how about a 4th option: completely random chance?
Friday, May 14, 2010
1 tbs of mind crumbles: A rambling continuation of the previous post
A Conversation about God cont'd
Sometimes I feel like I've seen too much, known too much, heard about too many messed up things. Is it any wonder those of my generation, and the ones younger than mine, are said to be jaded, cynical, disillusioned? We have constant access to sensationlist news, activist outrage, celebrity gossip, as well as talking heads who say a version of the same thing on the hour and streaming headlines fed across TV screens and email servers. Our propensity to relay tragedy seems never-ending. Combine this with what occurs in the course of our everyday lives. Combine this with extensive travel abroad, the bulk of it in developing countries. I feel too young to have seen what I have seen, to have read/known/heard what I have read/known/heard...if life expectancy were still 45 years, I could at least feel justified in being world-weary from time to time. But I am relatively young for my times. Then I think, "if my mind aches from even thinking about the difficult things I've seen in my own short little life, how could I possibly comprehend God's knowledge of the full extent of all the terrible things in the history of the world?" It would absolutely blow my mind and I'd probably wind up in an insane asylum...rather depressing thoughts but a perfect example of why God protects us from "the reason" for each and every evil/messed up thing that happens.
Sometimes I feel like I've seen too much, known too much, heard about too many messed up things. Is it any wonder those of my generation, and the ones younger than mine, are said to be jaded, cynical, disillusioned? We have constant access to sensationlist news, activist outrage, celebrity gossip, as well as talking heads who say a version of the same thing on the hour and streaming headlines fed across TV screens and email servers. Our propensity to relay tragedy seems never-ending. Combine this with what occurs in the course of our everyday lives. Combine this with extensive travel abroad, the bulk of it in developing countries. I feel too young to have seen what I have seen, to have read/known/heard what I have read/known/heard...if life expectancy were still 45 years, I could at least feel justified in being world-weary from time to time. But I am relatively young for my times. Then I think, "if my mind aches from even thinking about the difficult things I've seen in my own short little life, how could I possibly comprehend God's knowledge of the full extent of all the terrible things in the history of the world?" It would absolutely blow my mind and I'd probably wind up in an insane asylum...rather depressing thoughts but a perfect example of why God protects us from "the reason" for each and every evil/messed up thing that happens.
Sunday, May 9, 2010
A Conversation about God
And there will no longer be heard in her the voice of weeping and the sound of crying. No longer will there be in it an infant who lives but a few days, or an old man who does not live out his days; For the youth will die at the age of one hundred and the one who does not reach the age of one hundred Shall be thought accursed. And they shall build houses and inhabit them; they shall also plant vineyards and eat their fruit. They shall not build, and another inhabit, they shall not plant, and another eat; for as the lifetime of a tree, so shall be the days of My people, and My chosen ones shall wear out the work of their hands. They shall not labor in vain, or bear children for calamity; for they are the offspring of those blessed by the LORD, and their descendants with them. It will also come to pass that before they call, I will answer; and while they are still speaking, I will hear. (NASB) Isaiah 65:19-24
M: Tonight as I was driving home, I saw a beautiful buck on the side of the road that had been hit by a car. Blood was coming out of its nose. Why do these things have to happen?
E: Because of our human greed and stupidity.
M: So it's all the fault of humans?
E: Society has deemed it necessary to have cars and roads, so yes.
M: Why are some things born just to be killed right away? Do you remember those baby rabbits at my old place that were killed by that stray cat? It was so sad. The poor mother rabbit. Why did they even have to be born at all, if they were just going to die? That incident can't really be blamed on humans, can it? Or is it because nature is out of balance due to human actions?
E: It could be, I guess.
M: But why do humans have to be like that? I'm a human, but I don't want those things to happen. I wish I could create a mode of transportation that didn't involve death. Is each and every one of us responsible, or humanity in general? I can understand that bad things happen because we live in a fallen world. I can understand that bad things happen because humans create a lot of our own suffering, as well as cause the suffering of other living things. I can even understand reasons why God would create beings who would die shortly after but who would have a tremendous and profound impact on others. What I don't understand is the seemingly senseless deaths of some creatures.
E: I'm not sure. Does God really care? I believe in God, but I've always questioned how much He cares about our individual lives. Maybe He only cares about the big picture.
M: But of course God cares!
E: Does He?
M: Of course He does. It says in the Bible that God notices when even a sparrow dies; therefore, as we were created in His image, how much more so does he notice us. He sees all. That's why I think you should eat less meat. God knows about the factory farming. He sees what is going on and He is angry when we cause his creatures unnecessary suffering.
E: You think God cares about the animals?
M: Of course He does. People did not even eat animals until after Noah's Ark, after the flood. It also says that in Heaven, there will be no more death. Eventually the wolf and the lamb will lie down together, and the lion will eat straw. God does not desire suffering or death for any of His creatures.
E: If He cares, then why doesn't He show it?
M: You don't think He does?
E: No--I mean, how does He? We don't see Him, it doesn't feel like He's around or that He cares.
M: What are you looking for? Thunder and lightning bolts?
E: Well, sure.
M: But, it doesn't matter. Because even when He did show it, people still refused to believe in Him. When Jesus was doing work on earth, in the flesh, many if not most people still rejected Him.
E: Hm.
M: You had Jesus performing miracles in front of people's eyes, but they still rejected Him. They were so caught up in the fact that the miracle occurred on the Sabbath, that legalism clouded their eyes and they said, "He doesn't fit our view of God, therefore he cannot be God."
E: Hm.
M: You see, God is always showing us He cares. He is always performing miracles. It just in ways that we don't expect, sometimes in ways we're not looking for, and because it doesn't fit our narrow, human framework, we refuse to accept them. God is bigger than our minds, than our own understanding. He is bigger than our rules. He refuses to play by our flawed human rules and tests.
E: Hm.
M: We cannot understand why these seemingly senseless things happen. We can guess, but it is only a shadow of complete understanding. Our minds are not ready to understand yet, because we're still living in the midst of it. And we are spiritual infants compared to eternity, compared to God.
E: Hm.
M: It's like Himal's heart surgeries. He is too little to understand; he cannot understand. All he knows is that these things have happened to him, and are happening, and maybe he even wonders why we as his parents do not put a stop to it. Can't we? Don't we want to? We did not desire for it to be this way. But we let it happen because it is his only chance at life. Without these things happening to him, he would die, although he does not understand that yet.
E: True.
M: We have to believe that all these things that happen will be used for greater good in the end. God will turn everything to good, and for His glory, if only we let Him. We have to believe that we will either learn why someday, or that eventually, the question of why will not even matter in the bigger scheme of things.
Unfortunately, no matter what, some will still be angry at God, although that anger is misdirected. They will ask why God didn't create a wonderful paradise for us all--forgetting that He did, and we as humans (ie, Adam and Eve, as the primordial ones) chose to leave it. Also unfortunately, there are some who will still reject the existence of God because He has somehow failed their test of what God should be. God wants us to believe in Him because He desires only good things for us. He is always inviting us to be a part of something amazing, something that will cause us to outgrow the narrow wooden beams we try to keep housing our belief system in. Although he have to step out of our comfort zone to truly follow God, it is always more than worth it to move into God's expansive mansion.
There is more than enough room in my Father's home. If this were not so, would I have told you that I am going to prepare a place for you? John 14:2
M: Tonight as I was driving home, I saw a beautiful buck on the side of the road that had been hit by a car. Blood was coming out of its nose. Why do these things have to happen?
E: Because of our human greed and stupidity.
M: So it's all the fault of humans?
E: Society has deemed it necessary to have cars and roads, so yes.
M: Why are some things born just to be killed right away? Do you remember those baby rabbits at my old place that were killed by that stray cat? It was so sad. The poor mother rabbit. Why did they even have to be born at all, if they were just going to die? That incident can't really be blamed on humans, can it? Or is it because nature is out of balance due to human actions?
E: It could be, I guess.
M: But why do humans have to be like that? I'm a human, but I don't want those things to happen. I wish I could create a mode of transportation that didn't involve death. Is each and every one of us responsible, or humanity in general? I can understand that bad things happen because we live in a fallen world. I can understand that bad things happen because humans create a lot of our own suffering, as well as cause the suffering of other living things. I can even understand reasons why God would create beings who would die shortly after but who would have a tremendous and profound impact on others. What I don't understand is the seemingly senseless deaths of some creatures.
E: I'm not sure. Does God really care? I believe in God, but I've always questioned how much He cares about our individual lives. Maybe He only cares about the big picture.
M: But of course God cares!
E: Does He?
M: Of course He does. It says in the Bible that God notices when even a sparrow dies; therefore, as we were created in His image, how much more so does he notice us. He sees all. That's why I think you should eat less meat. God knows about the factory farming. He sees what is going on and He is angry when we cause his creatures unnecessary suffering.
E: You think God cares about the animals?
M: Of course He does. People did not even eat animals until after Noah's Ark, after the flood. It also says that in Heaven, there will be no more death. Eventually the wolf and the lamb will lie down together, and the lion will eat straw. God does not desire suffering or death for any of His creatures.
E: If He cares, then why doesn't He show it?
M: You don't think He does?
E: No--I mean, how does He? We don't see Him, it doesn't feel like He's around or that He cares.
M: What are you looking for? Thunder and lightning bolts?
E: Well, sure.
M: But, it doesn't matter. Because even when He did show it, people still refused to believe in Him. When Jesus was doing work on earth, in the flesh, many if not most people still rejected Him.
E: Hm.
M: You had Jesus performing miracles in front of people's eyes, but they still rejected Him. They were so caught up in the fact that the miracle occurred on the Sabbath, that legalism clouded their eyes and they said, "He doesn't fit our view of God, therefore he cannot be God."
E: Hm.
M: You see, God is always showing us He cares. He is always performing miracles. It just in ways that we don't expect, sometimes in ways we're not looking for, and because it doesn't fit our narrow, human framework, we refuse to accept them. God is bigger than our minds, than our own understanding. He is bigger than our rules. He refuses to play by our flawed human rules and tests.
E: Hm.
M: We cannot understand why these seemingly senseless things happen. We can guess, but it is only a shadow of complete understanding. Our minds are not ready to understand yet, because we're still living in the midst of it. And we are spiritual infants compared to eternity, compared to God.
E: Hm.
M: It's like Himal's heart surgeries. He is too little to understand; he cannot understand. All he knows is that these things have happened to him, and are happening, and maybe he even wonders why we as his parents do not put a stop to it. Can't we? Don't we want to? We did not desire for it to be this way. But we let it happen because it is his only chance at life. Without these things happening to him, he would die, although he does not understand that yet.
E: True.
M: We have to believe that all these things that happen will be used for greater good in the end. God will turn everything to good, and for His glory, if only we let Him. We have to believe that we will either learn why someday, or that eventually, the question of why will not even matter in the bigger scheme of things.
Unfortunately, no matter what, some will still be angry at God, although that anger is misdirected. They will ask why God didn't create a wonderful paradise for us all--forgetting that He did, and we as humans (ie, Adam and Eve, as the primordial ones) chose to leave it. Also unfortunately, there are some who will still reject the existence of God because He has somehow failed their test of what God should be. God wants us to believe in Him because He desires only good things for us. He is always inviting us to be a part of something amazing, something that will cause us to outgrow the narrow wooden beams we try to keep housing our belief system in. Although he have to step out of our comfort zone to truly follow God, it is always more than worth it to move into God's expansive mansion.
There is more than enough room in my Father's home. If this were not so, would I have told you that I am going to prepare a place for you? John 14:2
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