Below is a heartbreaking, depressing, and true account of what most parents of terminally children must face in those final years, months, days, hours, minutes...and even seconds. While every child and situation are unique, much of the emotions and ordeals have common threads running through them.
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Reposted from: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1
Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of
creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and
focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and
will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare
genetic disorder. He is slowly regressing into a vegetative state. He’ll become
paralyzed, experience seizures, lose all of his senses before he dies.
There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose
your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound
understanding of the human experience or without hard-won lessons, forged
through grief and helplessness and deeply committed love about how to be not
just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the
parenting magazines. During my pregnancy, I devoured every parenting guide I
could find. My husband and I thought about a lot of questions they raised: will
breast-feeding enhance his brain function? Will music class improve his
cognitive skills? Will the right preschool help him get into the right college?
I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no
future. The prenatal test I took for Tay-Sachs was negative; our genetic
counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is
thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive
about such matters, I had it done anyway, twice. Both times the results were
negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make
little sense now. No matter what we do for Ronan — choose organic or
non-organic food; cloth diapers or disposable; attachment parenting or sleep
training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children
in music class or take them to Mommy and Me swim class because we hope they will
manifest some fabulous talent that will set them — and therefore us, the proud
parents — apart. Traditional parenting naturally presumes a future where the
child outlives the parent and ideally becomes successful, perhaps even achieves
something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the
latest handbook for parents hoping to guide their children along this path. It’s
animated by the idea that good, careful investments in your children will pay
off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a
perfect SAT or sprinting across a stage with a Harvard diploma in his hand.
We’re not waiting for Ronan to make us proud. We don’t expect future returns on
our investment. We’ve chucked the graphs of developmental milestones and we
avoid parenting magazines at the pediatrician’s office. Ronan has given us a
terrible freedom from expectations, a magical world where there are no goals, no
prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my
son: cuddling, feedings, naps. He can watch television if he wants to; he can
have pudding and cheesecake for every meal. We are a very permissive household.
We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s
clean and warm and well rested and ... healthy? Well, no. The only task here is
to love, and we tell him we love him, not caring that he doesn’t understand the
words. We encourage him to do what he can, though unlike us he is without ego or
ambition.
Ronan won’t prosper or succeed in the way we have come to understand this
term in our culture; he will never walk or say “Mama,” and I will never be a
tiger mom. The mothers and fathers of terminally ill children are something else
entirely. Our goals are simple and terrible: to help our children live with
minimal discomfort and maximum dignity. We will not launch our children into a
bright and promising future, but see them into early graves. We will prepare to
lose them and then, impossibly, to live on after that gutting loss. This
requires a new ferocity, a new way of thinking, a new animal. We are dragon
parents: fierce and loyal and loving as hell. Our experiences have taught us how
to parent for the here and now, for the sake of parenting, for the humanity
implicit in the act itself, though this runs counter to traditional wisdom and
advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal
and unwieldy and embarrassing. The certainties that most parents face are
irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the
stakes impossibly high. Conversations about which seizure medication is most
effective or how to feed children who have trouble swallowing are tantamount to
breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly
possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to
be superhuman, to raise children who outpace all their peers, don’t want to see
what we see. The long truth about their children, about themselves: that none of
it is forever.
I would walk through a tunnel of fire if it would save my son. I would take
my chances on a stripped battlefield with a sling and a rock à la David and
Goliath if it would make a difference. But it won’t. I can roar all I want about
the unfairness of this ridiculous disease, but the facts remain. What I can do
is protect my son from as much pain as possible, and then finally do the hardest
thing of all, a thing most parents will thankfully never have to do: I will love
him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my
reflection in his greenish-gold eyes. I am a reflection of him and not the other
way around, and this is, I believe, as it should be. This is a love story, and
like all great love stories, it is a story of loss. Parenting, I’ve come to
understand, is about loving my child today. Now. In fact, for any parent,
anywhere, that’s all there is.
Reposted from: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1
*************************
Reposted from: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1
Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of
creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and
focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and
will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare
genetic disorder. He is slowly regressing into a vegetative state. He’ll become
paralyzed, experience seizures, lose all of his senses before he dies.
There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose
your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound
understanding of the human experience or without hard-won lessons, forged
through grief and helplessness and deeply committed love about how to be not
just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the
parenting magazines. During my pregnancy, I devoured every parenting guide I
could find. My husband and I thought about a lot of questions they raised: will
breast-feeding enhance his brain function? Will music class improve his
cognitive skills? Will the right preschool help him get into the right college?
I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no
future. The prenatal test I took for Tay-Sachs was negative; our genetic
counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is
thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive
about such matters, I had it done anyway, twice. Both times the results were
negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make
little sense now. No matter what we do for Ronan — choose organic or
non-organic food; cloth diapers or disposable; attachment parenting or sleep
training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children
in music class or take them to Mommy and Me swim class because we hope they will
manifest some fabulous talent that will set them — and therefore us, the proud
parents — apart. Traditional parenting naturally presumes a future where the
child outlives the parent and ideally becomes successful, perhaps even achieves
something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the
latest handbook for parents hoping to guide their children along this path. It’s
animated by the idea that good, careful investments in your children will pay
off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a
perfect SAT or sprinting across a stage with a Harvard diploma in his hand.
We’re not waiting for Ronan to make us proud. We don’t expect future returns on
our investment. We’ve chucked the graphs of developmental milestones and we
avoid parenting magazines at the pediatrician’s office. Ronan has given us a
terrible freedom from expectations, a magical world where there are no goals, no
prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my
son: cuddling, feedings, naps. He can watch television if he wants to; he can
have pudding and cheesecake for every meal. We are a very permissive household.
We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s
clean and warm and well rested and ... healthy? Well, no. The only task here is
to love, and we tell him we love him, not caring that he doesn’t understand the
words. We encourage him to do what he can, though unlike us he is without ego or
ambition.
Ronan won’t prosper or succeed in the way we have come to understand this
term in our culture; he will never walk or say “Mama,” and I will never be a
tiger mom. The mothers and fathers of terminally ill children are something else
entirely. Our goals are simple and terrible: to help our children live with
minimal discomfort and maximum dignity. We will not launch our children into a
bright and promising future, but see them into early graves. We will prepare to
lose them and then, impossibly, to live on after that gutting loss. This
requires a new ferocity, a new way of thinking, a new animal. We are dragon
parents: fierce and loyal and loving as hell. Our experiences have taught us how
to parent for the here and now, for the sake of parenting, for the humanity
implicit in the act itself, though this runs counter to traditional wisdom and
advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal
and unwieldy and embarrassing. The certainties that most parents face are
irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the
stakes impossibly high. Conversations about which seizure medication is most
effective or how to feed children who have trouble swallowing are tantamount to
breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly
possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to
be superhuman, to raise children who outpace all their peers, don’t want to see
what we see. The long truth about their children, about themselves: that none of
it is forever.
I would walk through a tunnel of fire if it would save my son. I would take
my chances on a stripped battlefield with a sling and a rock à la David and
Goliath if it would make a difference. But it won’t. I can roar all I want about
the unfairness of this ridiculous disease, but the facts remain. What I can do
is protect my son from as much pain as possible, and then finally do the hardest
thing of all, a thing most parents will thankfully never have to do: I will love
him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my
reflection in his greenish-gold eyes. I am a reflection of him and not the other
way around, and this is, I believe, as it should be. This is a love story, and
like all great love stories, it is a story of loss. Parenting, I’ve come to
understand, is about loving my child today. Now. In fact, for any parent,
anywhere, that’s all there is.
Reposted from: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1
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