Well... We didn't have one of these yet...
Sunday, June 7, 2009
Monday, June 1, 2009
The Blame Game
Since Willa was born I have had an extraordinary number of people ask me if I was going to sue the doctors who did not tell me that my daughter was going to be born with Costello Syndrome. “Are they going to be responsible and pay for a lifetime of medical care?!” I have been asked if I was going to sue because I must be so angry that they did not know before she was born. I have been asked if I was going to sue because how could they have missed anything as major, as huge, as forever as this?
They want someone to pay. They want to know who was at fault. They need to point the finger and drive the verdict through them like a lance.
At first I thought that person was me. I thought I should have known. I apologized over and over to my husband. I feared he would blame me for not knowing what we were going to encounter; for not preparing us for Willa as who Willa is. Before she was born, we already knew her name, why didn’t we know this? How could I not have known?
I couldn’t blame booze, I couldn’t blame drugs, I couldn’t blame family history, a fall down stairs, unpasturized cheese, nitrates. I had none of those things during my pregnancy. I gave up sugar because they thought I might have gestational diabetes (which I never had). I stayed on three months of bed rest where I only got up for appointments with my obstetrician. I read all the books, I drank a lot of water, I rested, I waited, I prayed.
In the end none of that mattered. We did not have a typical child.
And I realized almost immediately after Willa’s diagnosis that blame didn’t matter either. For two very important reasons. Firstly, it was no one’s fault. Medicine is not perfect. Doctors are not perfect. We are not perfect. There are still mysteries regardless of neonatologists, fetal echos, MRI. Blood tests will tell you nothing, amniocentesis will hide the truth, neuchal translucency measurements can be questioned. In the barking, snarling early gasps of cellular development things happen that will be forever hidden from us and in these early stages all manner of fates are decided. The mysteries will never be revealed.
Secondly, and much much more importantly, Willa is not a punishment. I do not need to blame someone for giving me the most amazing person I have ever met. I am not angry that she is my daughter. I am not sad. I feel no loss. I have only thanks now for what I have been given and I embrace that which I cannot control, namely Willa herself: my mystery, my beautiful daughter and this life we all have together.
They want someone to pay. They want to know who was at fault. They need to point the finger and drive the verdict through them like a lance.
At first I thought that person was me. I thought I should have known. I apologized over and over to my husband. I feared he would blame me for not knowing what we were going to encounter; for not preparing us for Willa as who Willa is. Before she was born, we already knew her name, why didn’t we know this? How could I not have known?
I couldn’t blame booze, I couldn’t blame drugs, I couldn’t blame family history, a fall down stairs, unpasturized cheese, nitrates. I had none of those things during my pregnancy. I gave up sugar because they thought I might have gestational diabetes (which I never had). I stayed on three months of bed rest where I only got up for appointments with my obstetrician. I read all the books, I drank a lot of water, I rested, I waited, I prayed.
In the end none of that mattered. We did not have a typical child.
And I realized almost immediately after Willa’s diagnosis that blame didn’t matter either. For two very important reasons. Firstly, it was no one’s fault. Medicine is not perfect. Doctors are not perfect. We are not perfect. There are still mysteries regardless of neonatologists, fetal echos, MRI. Blood tests will tell you nothing, amniocentesis will hide the truth, neuchal translucency measurements can be questioned. In the barking, snarling early gasps of cellular development things happen that will be forever hidden from us and in these early stages all manner of fates are decided. The mysteries will never be revealed.
Secondly, and much much more importantly, Willa is not a punishment. I do not need to blame someone for giving me the most amazing person I have ever met. I am not angry that she is my daughter. I am not sad. I feel no loss. I have only thanks now for what I have been given and I embrace that which I cannot control, namely Willa herself: my mystery, my beautiful daughter and this life we all have together.
Tuesday, May 26, 2009
More Vocabulary
I am still thinking about words. Anonymous wrote a comment that I deeply appreciated about the proper usage of Ds vocabulary. I realized that I always thought “Ds” meant “Downs” not “Down syndrome.” My eyes saw one thing and that’s what I thought it was. The comment further discussed how the usage of defining a person with Ds should be just that, a person with Down syndrome, rather than a Down syndrome person.
In the Costello community the opposite has been offered. That defining a person as having Costello syndrome, rather than a “Costello person” makes them sound as if they have a sickness when the syndrome is just the person, a defining identity trait. That saying, “Costello person” makes the syndrome and the person the same, while Anonymous pointed out that they preferred “person with Ds,” to put the person first.
Why does this all matter so much? Why so much discussion about whether to put the syndrome before or after the word person?
I find myself of two minds. Perhaps even more. It matters because words are balled fists. They land punches. But also, in the energy given over to the defining, the categorizing, the making acceptable what is ultimately not are we losing focus? Is vision blurred so you see, for example, Costello Person and not Willa?
I guess the problem is I see both. I think we probably all do. You see your child, their individuality, their themness. But you always see that other too. The features shaped and guided by their syndrome, the traits they are predisposed to.
And aren’t they both? This and that. One and the other.
It matters and it doesn’t matter. I suppose most importantly because we live in a greater world of eyes; of people who do not see the same things as us. They see the syndrome. We see our kid. They call names. We say their names. Are we trying to construct a house of words that will protect them when they are out in the world? Because when they are in our arms do we really care what the hell difference it makes whether it’s Costello Person or person with Costello Syndrome?
I think we are trying to pave something for them. With this focus on terms and usage we are trying to tell other people how to think of them. We are desperately trying to pull back the veil so they can see, all in that one moment when they encounter our family. But it will always fail. Because by the very nature of having to do any of this we are only drawing the difference more boldly. We are darkening the line. We are, in the end, not fooling anyone.
And here my other mind has its say. It still matters. We still try. We must. We are parents to these children and we cannot help ourselves. We want, like all parents do, to make our children’s lives better, easier, happier. It’s harder for our kids and for us and so we battle with these words. We write and rewrite our rules. We push language around so much with our tongue we can always taste the flavor of it. Sometimes bitter, often sweet, always there.
In the Costello community the opposite has been offered. That defining a person as having Costello syndrome, rather than a “Costello person” makes them sound as if they have a sickness when the syndrome is just the person, a defining identity trait. That saying, “Costello person” makes the syndrome and the person the same, while Anonymous pointed out that they preferred “person with Ds,” to put the person first.
Why does this all matter so much? Why so much discussion about whether to put the syndrome before or after the word person?
I find myself of two minds. Perhaps even more. It matters because words are balled fists. They land punches. But also, in the energy given over to the defining, the categorizing, the making acceptable what is ultimately not are we losing focus? Is vision blurred so you see, for example, Costello Person and not Willa?
I guess the problem is I see both. I think we probably all do. You see your child, their individuality, their themness. But you always see that other too. The features shaped and guided by their syndrome, the traits they are predisposed to.
And aren’t they both? This and that. One and the other.
It matters and it doesn’t matter. I suppose most importantly because we live in a greater world of eyes; of people who do not see the same things as us. They see the syndrome. We see our kid. They call names. We say their names. Are we trying to construct a house of words that will protect them when they are out in the world? Because when they are in our arms do we really care what the hell difference it makes whether it’s Costello Person or person with Costello Syndrome?
I think we are trying to pave something for them. With this focus on terms and usage we are trying to tell other people how to think of them. We are desperately trying to pull back the veil so they can see, all in that one moment when they encounter our family. But it will always fail. Because by the very nature of having to do any of this we are only drawing the difference more boldly. We are darkening the line. We are, in the end, not fooling anyone.
And here my other mind has its say. It still matters. We still try. We must. We are parents to these children and we cannot help ourselves. We want, like all parents do, to make our children’s lives better, easier, happier. It’s harder for our kids and for us and so we battle with these words. We write and rewrite our rules. We push language around so much with our tongue we can always taste the flavor of it. Sometimes bitter, often sweet, always there.
Sunday, May 3, 2009
Before There Were Three
Before there were three, there were two. A very happy two. A two that did everything together, as if all errands, all decisions all challenges were made with legs tied together, a constant three-legged race. The material that bound us would change. Sometimes it was rope, sometimes slick ribbon, sometimes the thinnest of cord. But it was always there. If you took it off, the legs bore the imprint, felt the sting of its removal. So even when unbound, the memory of the binding remained.
When I was rushed into the operating room for Willa’s emergency c-section my husband was not allowed to be with me. We felt the fibers stretch. When she was taken to another hospital at two weeks old we walked so close to one another we shared steps. When we were told she had Costello Syndrome the binding came all out of order. It shifted from the ankle to the knee, to mid-calf and then up at our throats, choking us both.
I have learned that when you have a sick child all binds can break between husband and wife, now father and mother. That which may have held in your past no longer applies to these new feats of strength. Your string may not be able to hold. Or, you would now be bound more tightly than ever imagined. That new threads would grow from this new root. That new knots would develop and fiercely protect your connection.
The only other thing that scared me about Willa’s diagnosis was that I might lose my husband. That in the shocking newness of what was terrible news we would not survive the earthquake. That mountains would be thrown up between us, that the mail would not get through, that we would begin to live under different stars.
We pulled at the binding, I heard it snap and lurch and creak with the weight of such unexpected sadness. But then I felt it pull us back together. We began to again walk step in step, though with new feet. We tie ourselves with a bow now, easy to undo should the strain prove too much, but it doesn’t break anything and when we have recovered we tie it up again, prettily. A gift of ourselves to ourselves and each other.
Before there were three there were a very happy two but now we are all one.
When I was rushed into the operating room for Willa’s emergency c-section my husband was not allowed to be with me. We felt the fibers stretch. When she was taken to another hospital at two weeks old we walked so close to one another we shared steps. When we were told she had Costello Syndrome the binding came all out of order. It shifted from the ankle to the knee, to mid-calf and then up at our throats, choking us both.
I have learned that when you have a sick child all binds can break between husband and wife, now father and mother. That which may have held in your past no longer applies to these new feats of strength. Your string may not be able to hold. Or, you would now be bound more tightly than ever imagined. That new threads would grow from this new root. That new knots would develop and fiercely protect your connection.
The only other thing that scared me about Willa’s diagnosis was that I might lose my husband. That in the shocking newness of what was terrible news we would not survive the earthquake. That mountains would be thrown up between us, that the mail would not get through, that we would begin to live under different stars.
We pulled at the binding, I heard it snap and lurch and creak with the weight of such unexpected sadness. But then I felt it pull us back together. We began to again walk step in step, though with new feet. We tie ourselves with a bow now, easy to undo should the strain prove too much, but it doesn’t break anything and when we have recovered we tie it up again, prettily. A gift of ourselves to ourselves and each other.
Before there were three there were a very happy two but now we are all one.
Sunday, April 26, 2009
Living in the Land of Fear or Fearing Fear Itself
There is a light that happens every evening, when the warmth of the sun has left and all that lurks are cold shadows, silver streaks and the uncertainty of your very vision. In the Land of Fear this is the light that permeates every moment, wetting the world under it, making things drip with a humid decay. Ruined houses sit in rows, each house the same, each row identical, on and on toward a horizon that never comes. This land stretches on forever.
Cats missing legs or tails or bits of ear pick from garbage left by sad lives. There are small dolls, scraps of paper with unheard or unanswered love notes on them, fish scales and bones. When you walk the streets here you must watch your step, things are underfoot that move.
When your child is diagnosed with anything, this is where you live.
I had a birthday recently. I’m older now. Again. This year I felt the change. I am different, for the first time in a long time I can feel where I am not the same. Not just in the body which bears the scars of the shift. Not just in the heart which has grown with love. Not just in the mind which bends but I have learned will not break. I am different in someplace deeper. I no longer fear anything.
What we have all been told is the worst nightmare, and what most certainly is: the loss of a child whether literal or the death of the child you thought you were to have has happened to us. Our Land of Fear brought home ruined houses filled with empty cribs, snakes curling around peeling slats and moths grown fat from shattered linens. We walked the streets. We could not get out. We could not find the horizon.
But you learn to breathe through this. You follow the bubbles to the surface. You find new light again.
And so I now know the worst can happen and I know that the very worst thing can be the best thing that ever happened to you. And it changes you. Fear lives in the deepest part of each of us. It hides there, peering out with eyes of coal. Every once in a while you see it blink. This is how you know it’s there.
This is not to say that I never feel scared, I still do from time to time. But I no longer care. I can stare back at those eyes. And I, do not blink.
Cats missing legs or tails or bits of ear pick from garbage left by sad lives. There are small dolls, scraps of paper with unheard or unanswered love notes on them, fish scales and bones. When you walk the streets here you must watch your step, things are underfoot that move.
When your child is diagnosed with anything, this is where you live.
I had a birthday recently. I’m older now. Again. This year I felt the change. I am different, for the first time in a long time I can feel where I am not the same. Not just in the body which bears the scars of the shift. Not just in the heart which has grown with love. Not just in the mind which bends but I have learned will not break. I am different in someplace deeper. I no longer fear anything.
What we have all been told is the worst nightmare, and what most certainly is: the loss of a child whether literal or the death of the child you thought you were to have has happened to us. Our Land of Fear brought home ruined houses filled with empty cribs, snakes curling around peeling slats and moths grown fat from shattered linens. We walked the streets. We could not get out. We could not find the horizon.
But you learn to breathe through this. You follow the bubbles to the surface. You find new light again.
And so I now know the worst can happen and I know that the very worst thing can be the best thing that ever happened to you. And it changes you. Fear lives in the deepest part of each of us. It hides there, peering out with eyes of coal. Every once in a while you see it blink. This is how you know it’s there.
This is not to say that I never feel scared, I still do from time to time. But I no longer care. I can stare back at those eyes. And I, do not blink.
Sunday, April 19, 2009
Should I Stay or Should I Go?
Since December we have been enjoying a relatively quiet period, no more hospitalizations or scares. Things are evening out a bit and leaving time for the normal things: therapy, doctors, trips to new specialists in Willa’s relentless drive to accumulate a legion of medical admirers. Which of course makes me incredibly and daily nervous. I am knocking on wood, I am wishing on pennies, I am dreading another stay chez CHOP.
And why? I mean, no one loves these things but what is it that really bothers me about the entire hospital stay, other than the abject fear for Willa’s life and well-being? The boredom? The lack of control? The sense of the parallel universe spinning in an orbit away from all light and normalcy and just, well, better meals? What?
I think all these things I can bear but what is so terrible is my nightly agonizing over whether to stay in Willa’s room or go home and get some sleep. This is of course after we are through anything questionable or scary. These are the nights when she is totally stable and doing her usual, which is to say, not sleeping.
When I sleep at the hospital, there is no sleep. When I go home, I cry all the way to the elevator, down to the garage and all the way home. I feel like a traitor, a Benedict Arnold of epic proportion, a skunk beyond all reckoning. I feel like I am the worst mother that has ever walked the face of this earth. I feel like everyone is watching me with disapproving eyes, they peer into my soul and condemn me. Is this dramatic enough?
It’s awful. It’s unwinnable. If I stay I am sacrificing the only sleep I may get this year. If I go I am so guilt ridden my night is riddled with bad dreams and sadness. The doctors all tell you to leave. The nurses say that they are paid for this and can go home and sleep in the morning. I have been told that it’s ok, that I am not the antichrist of mothering, that people need to sleep and she will be well looked after. And she will be, but not by ME. And so we go around again…
Willa has had 6 hospitalizations and each time this question gets no easier to answer. I am so far incapable of making any peace with this, of being decisive, of managing to take care of Willa and myself at the same time. I can’t do it with any grace or fortitude. I have no conviction. Either way it sucks and that’s pretty much all I can get to in all this.
And so I dread the hospital… For this above all reasons. I dread walking out the door and leaving Willa behind. I dread the loss of all sleep and the crushing exhaustion of a medical emergency and then the long recovery. Is there any way to make peace with this? I think I need Willa to tell me what to do but so far she ain’t talkin’.
And so I’ll knock on wood, I’ll wish on pennies, I’ll pray for good health and sunny skies and the wisdom to know next time.
And why? I mean, no one loves these things but what is it that really bothers me about the entire hospital stay, other than the abject fear for Willa’s life and well-being? The boredom? The lack of control? The sense of the parallel universe spinning in an orbit away from all light and normalcy and just, well, better meals? What?
I think all these things I can bear but what is so terrible is my nightly agonizing over whether to stay in Willa’s room or go home and get some sleep. This is of course after we are through anything questionable or scary. These are the nights when she is totally stable and doing her usual, which is to say, not sleeping.
When I sleep at the hospital, there is no sleep. When I go home, I cry all the way to the elevator, down to the garage and all the way home. I feel like a traitor, a Benedict Arnold of epic proportion, a skunk beyond all reckoning. I feel like I am the worst mother that has ever walked the face of this earth. I feel like everyone is watching me with disapproving eyes, they peer into my soul and condemn me. Is this dramatic enough?
It’s awful. It’s unwinnable. If I stay I am sacrificing the only sleep I may get this year. If I go I am so guilt ridden my night is riddled with bad dreams and sadness. The doctors all tell you to leave. The nurses say that they are paid for this and can go home and sleep in the morning. I have been told that it’s ok, that I am not the antichrist of mothering, that people need to sleep and she will be well looked after. And she will be, but not by ME. And so we go around again…
Willa has had 6 hospitalizations and each time this question gets no easier to answer. I am so far incapable of making any peace with this, of being decisive, of managing to take care of Willa and myself at the same time. I can’t do it with any grace or fortitude. I have no conviction. Either way it sucks and that’s pretty much all I can get to in all this.
And so I dread the hospital… For this above all reasons. I dread walking out the door and leaving Willa behind. I dread the loss of all sleep and the crushing exhaustion of a medical emergency and then the long recovery. Is there any way to make peace with this? I think I need Willa to tell me what to do but so far she ain’t talkin’.
And so I’ll knock on wood, I’ll wish on pennies, I’ll pray for good health and sunny skies and the wisdom to know next time.
Monday, April 13, 2009
My Dream Deferred
When I was pregnant with Willa I spent the hours on bed rest imagining the things we would do together. We would see movies at the theater, gorging on popcorn and candy. We would investigate the gardens of Pennsylvania, prying open the petals of spring or fall pansies to look at the lady within. We would bake ill-conceived cookies and laugh at our clumsy results. We would take long walks on the shores of our Lake Galena, her in her stroller, me in my full glory parading my daughter about the periphery of a man-made lake dotted with small sailboats.
Now certainly this year has not been without adventures. We have learnt the inner workings and labyrinthine doings of the hospital. We have strolled the corridors from the MRI suite to the cardiology floor and back again. We have welcomed friends and family members who are so loving they come to us, though no one lives close by.
This past year I put aside my dreams for Willa and my time in the more immediate concerns of her health, her development, the formulation of a program for her care, assembling her team. Movies, cookies, strolls were as out of reach as Paris, the moon, long division.
But spring is here.
I heard the last churn of the enteral pump last week signaling the end of Willa’s 3:00 feed and I made a decision. I, with my daughter alongside, was going to charge the evening. I loaded Willa into her car seat. We took the short trip to the fabled Lake Galena. I put her in her stroller and we strolled. In my full glory I paraded my girl up hill and down, round bends and back again, spying the daffodils burgeoning in the woods, seeing the bluebird in the field, feeling the long forgotten sun. I walked so far I took all the skin off my toes and felt nothing. I walked so far with her that I was sore for days afterward. My dream was now my evening. My hope was now my life.
There are moments when you have these funny little successes, things that were just so banal and effortless in your previous life you cannot imagine that one day they will be your personal climb up Everest. But that walk was. That walk took a year to get to. And it was so worth it.
Now certainly this year has not been without adventures. We have learnt the inner workings and labyrinthine doings of the hospital. We have strolled the corridors from the MRI suite to the cardiology floor and back again. We have welcomed friends and family members who are so loving they come to us, though no one lives close by.
This past year I put aside my dreams for Willa and my time in the more immediate concerns of her health, her development, the formulation of a program for her care, assembling her team. Movies, cookies, strolls were as out of reach as Paris, the moon, long division.
But spring is here.
I heard the last churn of the enteral pump last week signaling the end of Willa’s 3:00 feed and I made a decision. I, with my daughter alongside, was going to charge the evening. I loaded Willa into her car seat. We took the short trip to the fabled Lake Galena. I put her in her stroller and we strolled. In my full glory I paraded my girl up hill and down, round bends and back again, spying the daffodils burgeoning in the woods, seeing the bluebird in the field, feeling the long forgotten sun. I walked so far I took all the skin off my toes and felt nothing. I walked so far with her that I was sore for days afterward. My dream was now my evening. My hope was now my life.
There are moments when you have these funny little successes, things that were just so banal and effortless in your previous life you cannot imagine that one day they will be your personal climb up Everest. But that walk was. That walk took a year to get to. And it was so worth it.
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