In the Shadow of the Moon

There’s dying from cancer and there’s living with cancer. There are two worlds, or more specifically, there are two sides of a single moon. It is out there, orbiting, changing our tides, causing domestic battles and inspiring young children. This moon lights my night. It darkens all my days.

Cancer is that strong: planetary, cold and omnipresent. I see its reflection in my morning coffee, in the face of my daughter, in the voice of my husband. Cancer exerts its own pull. These two sides, the living and the dying are in constant concert. They dance so closely you cannot tell one step from the other. They sway across the sky of my life, locked together, locking me in their pull.

Willa, today, is living with cancer. Willa, tomorrow, may be dying from it. We do not yet know which way balances will tip. I still do not know if there is a tip, if there is a balance. I think in my deepest places that cancer will do its work. That the moon is, in the end, uninhabitable.

But this is not defeat. This is life. This is the business of living with a power that you have absolutely no control over. We seek treatment, we pray, we bargain with the universe but the universe is not talking back. It keeps its secrets.

Willa has just completed her seventh week of treatment. In a month we will do another CT scan. We will assess the tumor once more, prod its corners, learn its secrets, face the damage done and ask one question. Can it be removed? If it can then we use a very particular language. We use words like, “cure.”

If the tumor cannot be removed, if it is wrapped around the vessels, if it has invaded Willa’s abdomen like a mass of snakes then we use another dictionary altogether. We do not use words like “cure.” No, that will not be made available to us. We will use words like “prolonging life,” like “palliative care.”

I had been making my adjustments. We drive into the city every Friday. Willa takes her medicine. Through the port they pour the poison and we pray. We wait. We laugh, we read stories, we play with toys. Because we make every minute count. I had found a new rhythm. I had worn a new path in the ground for my steps to follow. It was getting easier after discovering my own orbit. I could find it in the dark.

But the moon switched face. We learned this new fact. That in one month’s time we will be shown one of two faces. The living, or the dead. Only the universe knows, and again, the same stubborn silence.

This is what cancer does.

It is not the disease. It’s the surprises. It’s the cruelty in hope, in thinking, “well, we’ve got this figured out. It’s hard but we’ll get through it.” Because really, you may not. At least, not altogether.

Tonight the wind blows so cold the house moans. Lacking arms it cannot wrap its limbs around to warm itself. I feel that way too. Something has been taken from me that I needed. We live with cancer but cancer kills. We live with cancer but cancer changes. We live with cancer but cancer will exact its price.

The moon hovers in the frozen sky. Diamond-hard and winking its one eye. All my life has been frozen and smashed to shards.

But I still believe in the sun.

The Invisible City of the Kidnapped

I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.

Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.

I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.

Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.

We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.

But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.

In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.

Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.

Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.

Willa has cancer.

Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?

We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.

Prayer

The night we sat in our kitchen, the words Costello Syndrome ringing in our ears, deafening, insistent, inevitable, I said to Colin, “I think these are the moments when it helps to be religious. To feel like there is a reason, a purpose for this. That there is a God that chose this and all we have to do is have faith.” But we are not. And there was to be no such reassurance. We would find that somewhere else.

Not that religion gives pat answers. Not that God cannot be argued with, challenged in his wisdom, asked for more. Children are born with syndromes, medical anomalies, challenges and futures we could never have imagined, and there is nothing you can do about it as a parent. The helplessness is absolute.

Over Willa’s 18 months we have had many people tell us they are praying for us. Many people we do not know. Many people we have never met. Word has spread in circles we have never ventured that there is a child, a family, that needs help from God. Candles are being lit.

I am so thankful for all of this. I have found myself saying my own prayers, not to anyone in particular but to whomever may be listening. It can’t hurt. I haven’t found religion in all this but I have found that there is a beauty in prayer, in the way it connects people. To know that someone closes their eyes and offers up hopes and gives energy to our daughter, an act of kindness that makes us less invisible.

So many ecclesiastic words are bandied about in regards to children with special needs. They are “angels” they are “gifts from God” they are going to teach us lessons about love, forgiveness and strength. But that doesn’t tell me why I had a daughter like Willa. I had learned many lessons previous to her arrival, believe me. I know a lot about love, forgiveness and strength.

For me, seeing her Costello Syndrome as a statistical short straw is liberating. We have no burden from this “gift.” It just happened. It just happened to us. And so we have to find a way of dealing with it.

And still, I pray. I pray for all the other families I see now who can no longer be invisible. I pray for the families who are about to be rocked to their very core. I pray for these children that their lives be happy. That they find acceptance and love and are seen in turn by eyes who will see beauty and illness, despair and deep contentment.

I pray for us, I pray for Willa, I pray that someone is listening, I pray that if I am meant to learn more lessons I am worthy of the extra knowledge and will not fail the challenge of my life. While I cannot find peace in religion I can find peace in myself. In the mash of all I feel and hope for and am confused about I do think that there is great purpose to all things. I’ll light candles too, something to light the dark and perhaps enough to see by.

Spica! And I'm Teething Too...

Talking To Myself

The other night, like many others, Willa and I were in the kitchen making dinner. She sat in her bouncy seat on the floor while I, in my culinary habit, walked a mile in between trips to the sink, the stove, the refrigerator in a distracted yet somehow successful rite of nightly passage. At 6:00 pm Willa gets dinner 1 (dinner 2, the sequel, follows at 9:00), and so while she is happily marooned in her seat she is being fed via g-tube. I hang her enteral bag on a cabinet knob and the pump does its work from the floor. Willa gets dinner and I make dinner in our family’s version of normal.

As I go about all this I keep up a steady stream of chatter. I tell Willa what I am taking out for dinner. I tell her that I am opening the box. I tell her that Daddy particularly loves his vegetables and won’t it be wonderful when one day you dear baby will be able to share in this meal we will soon eat. I go on and on.

It reminded me of people I saw in my pre-Willa days. People on television: documentaries or human interest stories about illness. It reminded me of something I had seen in coffee shops or hospitals or bus rides. I remembered all these women talking to children who did not respond. They were either incapable of it for cognitive reasons or medical ones. The eyes of the children seemed vacant to me. The exercise immensely depressing. I thought how incredibly sad that these women must talk to themselves, all day, all alone, pretending that their beloveds can hear them.

I stopped dead in my tracks in my kitchen. I looked at my daughter. She looked at me. I realized that we had been having a conversation, not a mommy monologue. As I had been opening the olives, turning on the water, being careful cause the stove is hot! she responded back in kind. She laughs at me. She listens. She is accumulating knowledge. She is feeling close to me, and most certainly I to her.

What I had never allowed for in my vision of those “poor mothers” was that they were having conversations too. There is no talking to oneself. If the mind be slower, if the body feeble, if the eyes cannot quite follow the linear progression of words in sentences wrapping all around it does not mean that there is no one there. They are there. In a look come the words. In a tremor of the body come the responses. In sighs and breaths and winks and tilts of heads paragraphs bloom.

I think of people catching us through night windows. A mother talking to a daughter who cannot respond and I wonder what they might think. I hope they can see how much fun we are having. How much we have to share. And I am now very much comforted by the fact that in kitchens all around us such wonderful discussions are being had. We are all connecting and connected.

Hospital III or The Invisible City of the Wait

I walked her to the operating room in my arms. The sedation made her body heavier, denser, more like muscle moving through deep water: uncoordinated, sleepy. When I handed her over she reached her tiny arms up for me. My body snapped. And then, the long nervy wait for her release from that room, the place we were not allowed to follow her.

Then, for us, life in the Invisible City of the Wait. It is a place where time can only be time. It does not pass. It does not stretch. It sits upon the clocks, choking them, smothering all life out of the moving hands, the numbered faces.

You pass through a world of seaweed, kelp forests of jangly nerves, deepest underwater fears, clingy hopes and darkness. You cannot tread in these waters. There is no footing either. All senses are sharpened points. Every sound could be news. Every person could bring word. Every sight is hope of report.

But the answers cannot come. They cannot swim. Somewhere on a foreign beach, past the twisted morass you are locked in, they are baking on a beach, bleached by the sun, taking their place amongst the shells, the driftwood, the matte shards of sea glass.

In the Invisible City of the Wait you drown, choke, are clogged, wrapped up in your fear, your desperate need for your child to be alright. But they don't know this. Because while you are trying to breathe, to fight to the surface, to see the sun again through the blackened filament of panic, you appear to all others to be "holding up well" perhaps a little "nervous." You drink coffee, you pace, smile at the nurses solicitously. There may be magazines involved. Because in the end remember, this city is invisible...

Updates and a Fix

It has been a weird few weeks. I had surgery this time, nothing major (double epi-gastric hernia repair, thanks Biscuits), but I am not to lift anything over ten pounds for four weeks which is a bit inconvenient with a sixteen pound girl who needs her mother’s hold for all mobility…

And then, another trip to the orthopedist this past Wednesday brought news that Willa will need surgery again. This time to rebuild her stubborn hip that will not mend on its own. Soon my restrictions will be over and good timing as poor Biscuits will be in a body cast for six weeks following her surgery. A 15 month old in a full body cast during the height of summer. Should be glorious, not to mention laundry fresh…

It’s a good time for it however. Her heart has been stable. We have managed to put some weight on her. She has been doing incredibly well since her December scare and so I stood there when I got the news and nodded with a new abandon, or resignation. I had been waiting for the next thing.

But something new happened. This sense of resignation had a ring to it. It was not soft or lifeless, quite the opposite. It felt metallic with light glinting and a steeliness I have found in other parts of me as well. This is to be our lives. This news will keep coming. I am finally, bit by relentless bit, learning to pace myself. It was the first trip to this doctor I felt no pain.

Another new happened as well. This is a surgery that should “fix” the problem. It surprised me. Fix? I had never contemplated this possibility with Willa before. Nothing has been fixable: not her heart, not the eating issues, the sleeping issues, the growth, the Costello. We can fix her hip. What a strange concept.

My daughter is not fixable. Costello has no cure. Her very genetic material is different and no pill or treatment can rewrite what nature decided to give her. I’m cool with this. It makes her who she is. An abandon, a resignation. But again, liberation. No hunting for the impossible, no hope for something that will never happen, no confusion over who sleeps in that crib upstairs. Willa is Willa.

So we have the surgeries. Some fix, others don’t. We know more are to come in our future however long we are fortunate to have one. I’m ready. All fixed up myself and trying not to lift the child that is the motivation of all my movements these days. Her hands are still on the levers. But increasingly I find that my hands cup hers, guiding more and more our flight.

Father's Day

It’s cold today. Later June and still, this chill in the ground, in the roots, still holding onto the memory of winter. All ice and snow in the shoots. There are birds though. I watch them fly back and forth across the yard. Hurrying, forever employed, desperately beating wings in air. My flowers cannot gain purchase on this summer, but the birds choke the clouds with their song. And it is Father’s Day.

Sometimes, in my late-night moments, when the work of the day is done, after I have told my husband all the household news: the updates from therapy with Willa, the thoughts of the doctors from the appointments, the latest news from the CS listserv, when alone in the quiet of falling-to-sleep, I feel like today. There is a chill still in my bones. There is ice and snow and winter maybe in the marrow.

There are birds though, the thoughts of Willa smiling in her high chair, the good news, the small battles won. This tumble of day memories and thoughts are busy, forever employed, as I am as her mother. But unlike today, unlike the shoots that struggle to grow in this cold wet June, I am warmed by the man beside me. All is thaw and sun and future flowers.

I cannot imagine what this year has been like for my husband. What being Willa’s father is like for him. I cannot imagine what he has felt in his quiet falling-to-sleep moments when you are too tired to not be completely honest with yourself. I can barely wrap my mind around my own such things.

But I do know this: without him I would gain no purchase on this life, without him my daughter would not grow, without him all would be winter frost and no birds, no song, no nothing.

So I thank you and can tell you this: that little girl loves you. With everything she has. And she knows something so incredibly important, she knows something that lives in her bones, that fires the fierce warmth inside her tiny self: you are her daddy.

Happy Father’s Day.

You Just Get

A little while ago I had a conversation with Kirsten about the surprises of having children. Another new mother, she has also found that while we prepared ourselves for “nothing will ever be the same” we could never have prepared ourselves for what that actually, daily, really meant.

The disappointments that come with losing all control of your life, the challenges associated with the things we do not like or enjoy about motherhood, the seldom acknowledged but palpable grief we feel over the loss of our former lives all get obscured by our children. We feel all this for them. We give all this up: control, sleep, a bit of ourselves for the children that bring us to a new place, an Invisible City for every new mother.

Until our children were born we were denied entry. The passports required were not yet assembled. But with the baby came the journey and we arrive on the shores of the Land of the New Self in which you meet, for the first time, the person you have become. It is the Land in which you are a mother.

Kirsten also said something to me in our conversation that I haven’t been able to shake, “You just get.” We do. Be it a boy when we hoped for a girl, be it Costello Syndrome rather than a typical child, be it brown eyes rather than blue, we just get. It’s a Yankee swap, the lottery, bingo. You put a hand into a bag and pull out your future. No backsies.

There are people who say that you only get what you can handle. I don’t agree. I have no gifts that endowed me with a special patience, acceptance or greater virtue. But I had to adapt. I had to change. I had to learn for my daughter because she needed me to. That’s motherhood. You change. You learn. You adapt because if you don’t you will lose the most important thing in your new life: the health and happiness of your child.

If I just got her than Willa just got me. Yes, I think we were lucky to get each other. We have both worked hard this year. Her to live and flourish. Me to break old boundaries I had set for myself and grow new distant horizons I hope to reach. And if it’s not her fault for being who she is, if it’s not my fault for having faults, if this new thing isn’t perfect than everything is exactly as it is meant to be. But that does not absolve you of the onus to improve. We can be better. And it is absolutely amazing what you learn to love and enjoy and thrive in.

In my Land of the New Self it takes me a while to find the Mother Me. We have trouble recognizing each other. So much has changed. But I take her hand and hold it tight. You just get. You just get.

The Dread Pirate Biscuits

Well... We didn't have one of these yet...

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.

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.

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.

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.

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.

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.

In the Land of the Village

For the last few years before Willa’s arrival my husband and I had lived a rather solitary life as a couple. We took up residence in a lighthouse of the mind. Still projecting light and welcome, but having very few visitors. Then Willa came to live with us by the sea and since then, well, the boats keep coming.

Willa has a speech therapist, an occupational therapist, a physical therapist and a special instruction educator come to the house weekly or bi-weekly. We also have a nurse during the week to accompany us to all the many appointments and to give me a few hours of sleep the mornings I can get them since our girl would rather not at night. Our lighthouse of happy solitude has become a village of helpers, or rather trained medical and therapeutic personnel, Willa’s entourage or team.

They set the hours on our new clock, moving hands I am unfamiliar with. They populate the air with their voices, speaking to the baby in foreign tones and singing unfamiliar songs. They introduce what is to be our routine. They are the ones to reveal new tasks, new strategies, new roads for exploration. In the Land of the Village, the many are for the One. My One: my Willa.

Our Lighthouse is now a thing of the past. There is no more solitude; there is no more stasis. Things are never where I leave them anymore. The inanimate objects of my home have found legs and walk all over the countertops. They find their way to places I would not have imagined for them. The refrigerator has new contents daily that come and go without my hand to choose them. The radio is set to stations that continue to surprise me.

There are sacrifices that surprise you in these new worlds. We have had to sacrifice our aloneness, our privacy, our hold on the unchangeability of our home. It is an incredibly small price to pay for what is gained. But still I feel the loss. It is weird to have the first noises of the day originate from someone else in your kitchen. It is strange to have people walk in the back door at the same time, every week or bi-weekly. It is odd to think that other hands help shape my child’s destiny, other hands that do things I cannot. I have so much to learn.

It is important to every so often pull the boat, the one stashed in the reeds, out from its hiding place and escape from the Village. It is necessary to put the three of us on the plank seat, grab an oar and row for the horizon, out to sea rather than in from it. We need to still confront our waves as a family, making the decisions for us, finding our way out of the storms that may surround us.

Only from out there in the brine surrounded by gulls can we turn back to shore, see the light from the lighthouse guiding us in and row for the many that wait for us on the shore, the Land of the Village we now call home.

Pace Yourself

The six weeks have expired and Wednesday found us back at the orthopedists for the verdict on Willa’s errant hip. Home free? Body cast? Surgery? It was to be none of the above.

Willa will need to wear her brace for the next six months. That’s MONTHS. Immediately my brain began to whir and threw up thoughts such as: by the time this thing comes off she will have spent a third of her life in it, she will never walk at this rate, she is going to spend the long summer in a foam and plastic cast which will rot her flesh, she can still not swim…

But then there were also these: it’s not surgery, it’s not a body cast, it’s just a brace and will probably work eventually, she doesn’t even really mind it, she will need new clothes…

Which leads me to one of my many questions in all this. When you have a medically fragile child, when life will be punctuated by constant and ever-present medical issues to varying degrees, when there is no cure, no end date, no stop to the body of my daughter that insists on presenting challenges to her life and development, how are you meant to pace yourself?

I sat in the orthopedists office and was wracked by the news. Again. It was not a new feeling. Not even a merely familiar one. It was a feeling that I feel all the time now. It’s a strange sensation, sickening fear mixed with a bored aggravation. It is simultaneously visceral and mundane. The “here we go again” married to “oh my god.” And each time you have to strap the kid back into her apparatus, drive home and make dinner. It’s just life now.

So, how do I pace myself? How do I feel what I feel but not let it chip a piece out of me each time? How do I stem the flow of worry and sickening fear and morbid thoughts of death and dying? How am I to have the energy to live a lifetime of this? How do you manage to not just live your life but flourish in it? How do you not go dead behind the eyes? How do you fiercely defend your very being from your life? Or rather, how do you allow your very being to embrace the life you have, letting the new bolster the old?

Willa is one and she has been hospitalized six times. She has developed scoliosis. She has hip dysplasia. She does not eat. She is in the 0.08% for height and the 0.14% for weight. She cannot push up her head when on her stomach. She has heart problems. She needs to wear braces on her wrists to keep them aligned. She does not sleep. She almost died in surgery. She is on medication all day.

Willa is one and she has not developed cancer. She smiles and laughs. She adores her parents and throws her body at us when she sees us. She does not have Chiari malformation. She is not on a ventilator. She is able to tolerate her g-tube feeds. She is not in constant pain. She can pass toys in her hands. She can say “ga.” She is not in a body cast. She is not having surgery again soon.

Hopefully.

Each step feels like it is made by feet with the toes cut off. Each mark of progress somehow bears the mark of amputation. But progress is progress and we have made ours. And so we march on. I am learning to pace myself. Slowly.

Dearest Darling Willa,

Today is your birthday my girl, the very first time we will present the candled cake, the streamers, the song. We will sing to you while you watch fire melt wax, while outside shoots are testing the loam, while buds are turning the trees red. All around us spring is happening and you are one year old.

You see sweetheart it is a celebration of your coming into the world. Your birthday is a gift and so you will receive them, wrapped in papers and ribbons you will be much more interested in than the toys within. We give you things because you have given us so much and we want to thank you for it.

Before long you will learn to wish on those candles. You will close your blue eyes and with a powerful exhalation throw that wish up with the smoke to the world. I hope all your wishes are answered. I wish on that moment too. I wish all the time. I wish for so many things for you. I won’t say them out loud. I want them to come true.

Willa, you are the daughter I had no idea I always wanted. We were made for each other kid. Getting to know you over the past year I think I have learnt more about myself than I had thought possible. I am learning about all kinds of new possibilities through you. I am meeting those I have loved the most in my life all over again through your eyes.

Your daddy and I are so deeply in love with you it has torn our hearts all to pieces like fine paper. Then the love stitched them back together again with new threads, making them stronger in the process. The pieces got all combined in the shuffle, a little of mine ended up in his, his mine and yours in each of us. We are all three of the same heart now.

On this day, your birthday, I will sing to you from this new heart, this better one. I will wish with this heart stronger hopes. I will look on you with my opened eyes. I will promise you with my whole being to celebrate you for everything you are and will be.

Happy birthday my baby. I love you so very much.

From the Land of No Sleep

There is a land where you do not sleep. I live in its capitol city. I moved here a year ago. Like so many transplants, I thought it would be temporary but a year later we have settled in, the carpet wears the depressions of furniture that does not move, my eyes have baggage, my body is unglued. We live each day with no sleep to pull us together, no sleep to give our eyes their rest, no sleep to stop the hallucinations.

Willa is the sun that will not set. In this land she fills our sky with waking. She will not allow the moon to rise; she with her tiny hands manipulates the levers, never setting the stars into motion. She will not allow sleep to come. Not to anyone.

Late in our never-ending day we slip her a drug to march her off to a slumber that will not last. We may, on a very very good night, get two hours. Then she is up every twenty minutes the rest of the night. It has been this way for eleven months. Every night.

She knows it’s time, she knows what sleep is for. She just cannot sustain it at all. During the days she takes occasional Napoleonic naps (15 to 20 minutes) before marching off to conquer Europe.

Apparently this is one of those constant Costello traits. The ones we all suffer. I can see my neighbors in this Land of No Sleep from my bedroom window; all lights are on, even in the dead of night. I wave.

We hope this improves. No one can tell us if it will or by how much. And so I go about my day, not worrying about the cats I see out of the corners of my eye that cannot be there, or the people that populate empty rooms. I know my tired mind is making them up but I am too tired to care anymore that they are there, or not there as it were.

My husband and I trade off nights though we have refused to separate into separate rooms. So this of course means that neither of us sleeps ever. We’ve made our peace with that too.

I avoid heavy machinery. I no longer do simple arithmetic. I smile a lot, just so, with a slightly deranged look in my eye. The one that twitches…

Kidding.

But not by much.

And the 15 pounds of unstoppable life? The sun, moon and stars in our Land of No Sleep? She keeps going, fueled by something internal that would power a locomotive, I’m sure of it. I think it is her will to live. I think it may be that she refuses to miss anything, even if she has to see it through closed eyes, hear life through ears that are open all the time.

Just being in close proximity to her you get a little of this energy. It does rub off, but not enough. Her coal burns entirely for her. So we inhabitants of this strange land have caffeine addictions, unnatural love for pillows, loss of words. Sometimes we just can’t find things in the dark, and sometimes we get to dream.

Vocabulary Lessons

I was having a conversation the other day when I realized that the words appearing in the dialogue bubble over my head were as strange and foreign as any distant language. I saw them there, suspended in mid air, hard, glistening, in bold. So much has entered our lives that is new, the I.V. pole, the enteral pump, the baby in a brace. But here too, vocabulary… These words are new, at first they hurt your brain but then… there they are, on the tongue, in the conversation, hanging above and around you like weather.

Some examples:

Costello Syndrome (Over the past year I have said the following to a number of insurance customer service operators, nurses, appointment makers, and random askers and acquaintances. I say, “ She has Costello syndrome, like Abbott and Costello but a lot less funny. This invariably gets me crickets. CRICKETS. Laugh! It’s ok. Sheesh.)

Hard munchibles (In Willa’s oral stim therapy we are introducing hard munchibles, i.e. a carrot or celery stalk to ready her mouth for the distant dream of getting food in there. Apparently my thumb is classed in this category as Willa’s new favorite pastime on my lap is to grab my digit and maul it with a ferocity bordering on mania.)

Non-nutritive suck (While meeting with speech pathologists in the early days we learnt this term, describing Willa’s oral aerobics about the bottle nipple she refused to take food through. This is a personal favorite for us as much of our life this past year has itself been a non-nutritive suck.)

Dysplasia (In and of itself not such a great thing but the word is promising. In my ear it sounds like a lost continent on which flourished beasts of incredible dancing ability.)

Afebrile (Without temperature for those who may not be up on their hospital lingo… When the nurses looks at my girl and says, “Well she’s afebrile so that’s good” I always hear the following said in the voice of Ralph Wiggim from the Simpson’s, “I’m afebrile!”)

What wonders! What strange sounds! What bizarre roads we walk down!

Upon Hearing Wonderful News

One of my best friends has just told me that she is pregnant. I could not be happier for her, her husband, the future child they will have. I cannot wait to meet this person as my friend is one of the singularly most wonderful people on the earth and her child will be, well, most welcome.

And then I find it gives me pause. I think about how she will soon have a three month old, a nine month old. Her child will all too rapidly be one, an age Willa is fast approaching and suddenly the ground beneath me, that I had thought fixed, permanent and unchangeable, shifts. Fissures sparkle and I realize that I am standing on pack ice in the middle of a polar sea. A crevasse opens and on the one side I stand in mittens and hat and on the other are the mothers I can no longer sit with at the table. They will be rescued. I will have to turn back to the ship, frozen in ice, an artic explorer writing a ship’s log of fear and sometimes desperation.

My friend’s child, this unborn possibility, will lap Willa within months of being born. Developmental milestones will be tossed to the annuals of its personal history and we will still not be eating, not walking, not talking.

I haven’t quite dealt with this yet. While I managed to make my break with Willa not being the typical child we expected I guess I haven’t made the break with the typical mom I thought I was to be. I am scared that the people I know are going to have children, and we will recede into our invisible city, forever inhabitants of a place no one can join.

Today my invisible city feels empty, apocalyptic. Drifts of snow piled in cabin corners, ice on broken windowpanes and roving polar bears. My friends will soon be separated from me, my experience apart that much more from their own experience, their own commonality of motherhood, the concerns of the typical child.

Will the interest in our life, like all novelties, fade in the glare of a sun not meant to shine on what is frozen? Will the eyes of our friends soon have to look away toward what they can use, toward what they can share, away from what is so completely foreign to the child they will have lying in the cribs of future nurseries?

As Willa gets older I see ever more prominently what is not there. When you have a child with developmental delay you make all these rationalizations, well they aren’t that far behind, with the adjusted age… It’s a lie of course, and as they get older the gaps widen and you, as the mother, fall in.

I’m tumbling down into one of these gaps. I feel miniature. I can hear the chatter from the world above. I’m part of it but somehow parallel to it. I am a mother but I am not the mother my friend will be. I’m not the mother I thought I was. I’m not the mother my other friends will become. I will be wearing blue when they wear red. I will be drinking when they eat. I will see when they close their eyes to sleep.

I know I am not alone. I know there are legions of mothers like me, living in cities of their own. But this is the first time. The first time knowledge has come home to roost. I know too that chasms exist between mothers with different children. I will do everything in my power to throw lines across the void, tie together rope to make a bridge, send out flares from below, write letters and put them in bottles to float off towards horizons I can no longer reach. I will talk and share and I will be patient too. And I will congratulate my friend with great love in my heart because she is going to have a baby, a beautiful baby soon and I would not want anything less for her.

I hope our children can become correspondents, from one city to another, one world to the parallel one. They can send letters across. Children can do anything. I have to gather the stationary, hoard postage, ready my girl for reaching out from deep places and taking hold of friendly little hands; the hands of her future friends.

Back on my ship, frozen in ice I finish my entry and walk up to the top deck. It is the permanent arctic night and up above plays the aurora. I see impossible colors and shapes. There are others who see these strange phenomena too. I have to remember that. And to these mothers I look now and extend my mittened hand once again. I feel fearful but warm, excited for what I will discover and sad at heart for the distance between old friends and myself. I feel numb sometimes too. But I look up, and there is the aurora, there is Willa, there is my life and my greatest joy.

What Our Eyes Are Trained To See

I read to Willa and say the same words over and over in multiple stories: cat, bird, red, black. I am training her eyes to see what she may someday recognize as part of her world. I am inhabiting her vision with the characters who will walk beside her. On future outings down future streets she will see cats in curtained windows, scarlet cardinals sounding out from the willow tree. She will know what they are and this will make her world larger because of it.

There was a time when I had no idea what ginestra was. I passed tables upon which sat their olfactory payload and was robbed by my own ignorance. Then I went to work for my mother-in-law at her flower shop and discovered it. Ginestra is the most shockingly gorgeous smelling flower on the planet. It is completely unassuming, slight even, but will fill your head with visions of a better world.

I have written before about living in these invisible cities. That since having Willa I see all around me now people I had not noticed before. I see so many Downs children, so many kids with cerebral palsy, so many different faces, different limbs, different abilities for walking, talking, eating. I see you because I see myself, my child and am a raw open wound of sensitive to how people see us.

To be invisible to the eyes around you is a cruel fate. A thing worse than anything. Because you live, you breathe, you see.

I tell Willa about cat, bird, red, black. I also tell her Costello, different, not all the same, beautiful, endless beautiful.

I stop at window boxes and smell the ginestra. I take every opportunity. Spring is coming and I will show this to my daughter and show her other flowers too. Because once you know such things you never go back.

My eyes had not been trained. But I learned. All of our eyes are hungry for new information, new sights, new words that will satisfy the person behind them. We forget that we are smarter than we think. We can improve.

It doesn’t make me a better person but it does make my life better, having my eyes see what they were ignorant of. To look at what is in front of me every day, adding color to my world, new visions of what already exists. It rounds out the picture. It fills the frame. Having a daughter with special needs and a medically complex constitution has done nothing but open the blinds for me.

I see you.

Do you see me?

Hospital II

There you are, sitting bedside, after having been through it. And what do you feel? When the fear and panic have passed, when the battles have been fought and apparently won, when you are on the walk home to health and your routine, you sit there, bedside and you feel one thing so crushingly and immediate you cannot fathom how you will be able to stand it: boredom. You are bored to fits.

All the articles have been read in the magazines, you already made your fifth walk of the day to the cafeteria for coffee, you have no more questions to ask of doctors or nurses, your minutes are gone.

I have to come up with something for these times. Something in advance. Because when you are there you are too exhausted, too out of your element, too pale for thinking. Crosswords require the alarms to not sound on the monitor, writing requires leaving her alone in the room, television requires no commercials because I cannot stand the frantic pace of TV in the hushed world of the hospital room.

I don’t sew. I don’t do mathematical equations for fun. I don’t know how to manicure my nails. I wish I could have the presence of mind to listen to language tapes, learn Mayan history, memorize the calls of the North American Songbirds. Cause you have all this time...

But I find myself buying M&M’s from the vending machine, going to the bathroom, again, making a phone call to my husband with absolutely nothing at all whatsoever to say. I reread Us Weekly looking for clues in paparazzi photos that may tell me something larger about our world. I find nothing, I’m getting fat on M&M’s, I’m bored with a shockingly empty bladder. Time to go get some more coffee.

Surprise!

This past week we took Willa to her first orthopedic appointment. My Costello tarot cards have been functioning quite well lately and so I saw scoliosis in our future and was predictably serene when the doctor informed us that Willa does, indeed, have it.

However, I was not prepared to hear that the ball of her left hip was not in the socket, apparently never has been, and she will need to be in a brace for the next six weeks. If that doesn’t work, full body cast, if that doesn’t work, surgery.

Now, this is not a life-threatening situation by any stretch. It’s not ideal obviously, not good even, but most likely we will be able to fix this problem and prevent other much more severe issues from developing. It was good we found it when we did.

As I was trying to cram Biscuits into her infant seat which did not accommodate the new “extras”, with her pleading and disquieted eyes, in a busy parking lot, with her stroller starting to plot its big escape down an incline, I paused to think… I was upset. Actually, pretty significantly upset.

Why? I know all about Costello surprises. I know that they will come, frequently, and with great force. I know my cards are more some kind of ancient riddle, churning out only so much information and barely hinting at the other realities that lay in store. I know that she’s going to be ok with this, that her doctor will be able to help, that it’s six weeks, that it’s going to pass.

But I wasn’t ready. And here I am confronted with a vision of my future, I never will be.

So what now? I think I shall have to toss my cards in the air and watch them come down like feathers, and blow away. I cannot rely on them anyway. They assist in nothing. All my research, my questions, my reading up, my preparation will at many points in this life come to naught. There will be surprises I had not forseen. But this is where I remember the joy of having a child like Willa. Life is like this, for everyone, at all times. I just get more reminders.

And so I look at my girl in this brace and see her future healing. We are all healing…

Hospital

I’ve never been to Las Vegas, Atlantic City, Reno, none of the fabled lands of the casino, gambling, lights. But I have ideas… I imagine great sweeping expanses of noise and machines and tables and comfortable footwear and no windows, no clocks. I imagine casinos are where time stands still.

Hospitals are like this. You enter the doors under duress, altered, attired in whatever you were wearing when things got too bad to stay home any longer. When you are admitted, an interesting word in and of itself, you commit to being a member of the ecosystem, microcosm, parallel universe that is the hospital.

There is no outside air. Vents whir and dispense their own weather. It always feels the same. There may be windows but you soon realize they are an illusion. These are covered in darkness, shrouded to protect the ill. Through them you will get no sense of what is happening outside. Or if you do it only serves as a stark reminder that there is a world functioning out there that you are separated from, held apart behind glass.

The clocks mean nothing. Hours pass as if minutes or days. It changes. Time itself is changeable and unpredictable. You catch yourself at moments standing in a tunnel. You can see the beginning and the end but are never sure where you are in between. All the numbers of minutes and hours start to blend anyway.

You are surrounded by numbers: temperature, blood pressure, dosage, weight. They tumble out of drawers, fall off walls, pour around corners, leap from pages and mouths and forms you are meant to sign. They clutter your mind and disorient you.

You, in your not right clothes, in your not right mind, in this not right place. It is easy to go dead behind the eyes. To let go. To gamble at these tables without any remembrance of your life on the outside. That world seems so far away now. Dramas happen every minute in here. Dramas we hope never to play any part in. There are miracles too and children. Lovely beautiful funny dopey silly children who still run and laugh and cry and scream in equal order. They seem to be the only ones who can maintain themselves; their childness.

Adults are crushed under the weight of this other world. Without our privacy, our things, our rules, our control we spin like insects missing wings, broken, unmoored. So we have to look to children, seek out their eyes. In them we see an antidote to the pressure. We see maps to lightness, the absence of fear.

Children are so rarely in control of their lives they thrive in these environments, they know to become like liquid in these worlds. They find all the cracks in the façade and one way or another they break through.

How I Made the Break

I have read a few stories now of parents dealing with their children’s diagnoses. The same word keeps coming up in the following phrase: “I was devastated.” Yes, I was devastated too. But I look at this word now and think how incredibly nothing it sounds compared to the violence of emotion behind it. It’s almost a dam against comprehension. Cities are devastated by natural disaster and tweens are devastated Joe Jonas will never love them and the word means the same to each.

I was devastated upon confirmation that my daughter had Costello Syndrome. But here is what that really meant:

It was June. Willa was again in the hospital and every day I was riding the commuter train 2 hours down to Philadelphia to spend the day with her then come back in order to sleep. Rinse, Repeat. This had been going on for a week.

One morning while getting dressed and readying myself for another day on the Cardiac Care Unit I paused. I realized I was alone in the house. The neighbors were at work. The air outside was not yet hot with the day, the windows were open and I could see the tender green of the neighboring trees.

I started screaming. Not crying, not wailing, not asking why, no tears. I just screamed with my entire body behind it.

I broke the dam of devastated. I broke capillaries in my face. I screamed for everything we lost in this storm. I screamed for the disappointment. I screamed for the things we would never have. I screamed for the places we would no longer go in life. I screamed because I will never be the mother of the bride. I screamed because my daughter will never share romantic love. I screamed for the grandchildren I will never have. I screamed and screamed and screamed.

And then I finished getting ready and I drove to the train, took it the two hours to Philadelphia, spent the day with my daughter and then came home to sleep.

Rinse, repeat.

And I never went back.

The Noro Diet

Trying to lose those stubborn 5 lbs left over from baby? Here’s a tip ladies, contract yourself some good ole fashioned Norovirus and watch that weight just flush itself away…

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Testimonial:

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Willa a.k.a Biscuits a.k.a. The Nibbler a.k.a. Willard...

Meds

The photograph above is part of our nighttime ritual. Turn on the dishwasher, turn down the heat, shut off the lights, draw Willa’s meds. These take us from 9:00pm to 6:30am, peppering the evening and deep night hours with their interruption. Those tableaux of weirdness I mentioned before? This would be one.

My husband will not even take Tylenol if he has a headache and I know looking at this layout every night on our countertop makes his brain collapse a little each time. He cannot believe it’s ok to give a baby so much medication, ok for a baby to have so many tests and procedures, ok for a baby to have radioactive materials pumped into her like water. And I say, “Look at her, we feed her through a tube, none of this is ok.”

And it’s not.

It’s not ok.

During the first real scare we were ambulanced (is this a verb?) to the local hospital. Frustratingly (if not dangerously), because of insurance and liability issues we have to be taken to the nearest medical facility. Never mind the fact that they do not even have pediatrics. Never mind the fact that Willa is way way more than they can handle. Never mind the fact that each time we are sent there we waste five to six hours waiting for the transport that will take us to CHOP (Children’s Hospital of Philadelphia and the most unfortunate acronym I have ever heard) when the baby is failing. It’s a nightmare and this past time we found ourselves in the ER I found myself doing something that shocked the hell out of me.

The ER doctor looked at Willa and began ordering tests, blood work, cultures and all manner of time-consuming, unnecessary and misdirected busywork leading us down lost avenues and forgotten streets. I knew that he was leading us there and so I said, “No. I don’t want you to do any of those things. I just want you make sure she is stable and arrange for the transport to CHOP.”

Now I never in my life would have thought I would do something like this. I’m no shrinking violet but I was brought up to allow figures of authority to do their bit and listen quietly while that bit was done. Not anymore. I’m learning what so many of you already know. When it comes to medicine, all bets are off. You have to trust yourself when you know things are not ok.

Part of finding my way as a mother has been finding my way as an untrained, unskilled and highly emotionally invested nurse. I can insert an NG tube into my baby’s nose, put it in her stomach and tape the outside section to her face in less than a minute. I can draw meds perfectly, I can administer them in the dark, shutting off a pump, disconnecting tubes, flushing lines and getting the feed rolling again before the alarm goes off. I can insert a g-tube into a hole in my kid. I can identify when Willa is tachycardic. I can talk my girl through an MRI, an X-ray, a DMSA, a VCUG.

It’s not ok.

I never wanted to be a doctor because I never wanted to have to do any of these things, make any of these decisions, live with consequences. What if I had been wrong in that ER? What if I make a mistake with her dosages? What if I have to decide to let her live or die?

We don’t even take Tylenol, but we have a girl who takes everything, needs everything, will have every test, will need every procedure.

So what is ok? Different things different days I think. It’s ok that my husband and I talk about everything. It’s ok that we demand what’s best for her; even if we are using what information we have at the time. It’s ok that I can learn new things. It’s ok that I know I’ll make mistakes. It’s ok that I am scared of very little at all anymore. It’s good even.

It’s a morass: medicine and its world. But we are in it, whether we like it or not. I’m not a doctor, or a nurse, but a mother with an interesting skill set. Now if I could only figure out how to work my crock-pot I’d be unstoppable.

Section

I need to tell this story because I need to write it down and look at it. It has itself rewritten my body, the mark of the surgeon forever a part of me now and so in order to stop late night images I have to do something else with it.

After three months of bed rest my water broke at 1:00 in the morning on Easter Sunday. While little bunnies were depositing candy and eggs in country corners I was loading myself into the car, deeply relieved, incredibly excited, mightily anxious and just thrilled that the nightmare of my pregnancy would soon be over and the baby would finally be here.

Things went strange pretty quickly. I progressed to 8 cm in an hour. And then Willa’s heart rate slowed, and slowed more. There wasn’t time to wait out the extra 2 cm and so I was hurled through the hallways of our small maternity department and into the OR for the c-section.

While the gurney was breaking through the doors I remember thinking, I can still feel these contractions. I told the anesthesiologist. When they made the first incision I looked at him and said, “I felt that.” He said, “Does it feel like pressure or like burning?” “Burning” I said. His face was partially obscured by the mask but I saw he blanched. I saw his eyes. I knew then that I was in trouble.

Throughout what followed I remember trying not to scream. I did not want to frighten Willa in her first moments in the world. They strapped down my arms and my legs flailed. I yelled because I could not control it. The pain was beyond all reckoning. I felt every moment of my daughter being taken out of me.

Through the viscera, the rank fear and the straining for a hand to hold (my husband had not been allowed in the room, he was outside closed doors listening to what was happening) I still waited for the cry. I needed to know she was ok and that cry was going to tell me all I needed to know. She cried, she howled. I passed out.

So now I carry this mark. It pulls the skin slightly in this funny way, not very noticeable but to me it’s a sentence with a strange new punctuation, something invented to suit a new purpose, a mark that rewrites all meaning. I look at it everyday and remember how it got there. It makes things clear for me. All that came before its presence no longer exists. Life began at that mark. In fact life was taken from underneath it, and lived, and sits on my lap and howls still but with new vigor, new purpose. We all have new purpose.

It reminds me too that we can survive anything, we can take it, we can walk through fires and though we may bear the scars ever afterwards, they only add to our story. They write wonderful new chapters. These are titles to poems of daily life. Willa is my poem and the mark that marks her entrance to this world and the terrible experience it was only reminds me of the strength I have to continue. We all of us. All of us. This is the strength of motherhood, of parenting interesting babies and singular lives. We are simultaneously both: alone in our unique circumstances and just like everyone else in what we have the capacity to endure.

Since Willa arrived I have met wonderful mothers. Women who walk through fires everyday that so many of us could not imagine and what you will continually hear from them is this, “I’m just like you.” And so we must support each other, for our sameness, our differences and the ways in which little marks mean big things. We all have a story to tell.

Another Country Heard From

We thought we had a lot going on. The adjustments, the difficulties, the laughing, the crying, the silent struggles, the hot new joys. We thought we were the sole helmeted travelers exploring the centers of this swirling new universe, just born from the particles of infinite space and time. And then I caught my cat straddling the baby in her bassinet, ever so nimbly eating the tubing from the feed bag, while the feed was going through the pump, while Willa slept soundly, while we were talking in the next room, in broad daylight, plastic and all. I looked at her, she looked at me and I knew, ok so I guess I’m not the only one making hay…

Ever the opportunist, our cat, The Panda, has been making some personal discoveries on her own these days. The most wondrous being the ins, outs, and contents of the feeding apparatus Willa came with. The baby may have stolen the laps, may have shut the doors of the bedroom, she may have turned the doting eyes of the two parents in her general and forever direction but there is a bag filled with the wonders of free food and it sits there as if from a limb high in the bassinet, just ripe for the picking. It sends a chill down my spine.

I’m sure you can imagine: a quick game of word association if you need help: cat, baby, bassinet, smother, accident, death etc etc… And so life gets a little more complicated for The Panda. At 9, 12, 3 and 6 she is shooed into the basement to wait out the hour-long feed. She is watched, monitored and disciplined. None ideal as far as she is concerned and she looks at us with saucer eyes, “Why?” I tell her, “Panda, the last thing I need from you is a guilt trip. We all have to make adjustments.”

Well, she’s made hers. I caught her again Wednesday. This time she had managed to disconnect the bag tubing from Willa’s extension on her g-tube (this is not made to be disconnected so easily, it’s a plastic nozzle that snaps into the extension, the extension goes right into Willa’s stomach via button. Is this the same apparatus that was so recently a near death experience you may ask? Yeah, that one…), she had pulled it onto the floor where she was busily eating as much of it as she possibly could before getting caught.

I honestly couldn’t even get mad. I was just plain impressed. Again, Willa never even woke up. Now, if I sneeze two rooms over it will wake her. If I put the dishes away in the kitchen it will wake her, if I walk too heavily, if I touch tin foil, if I need to make a phone call, if I think about doing laundry, all will wake her. But a cat pulling off her feed from a hole in her body? Apparently, no biggie.

And the universe expands…

Retarded

I read the letter detailing Willa’s many current and future (potential) symptoms due to her syndrome and came upon this sentence: “Willa will be mentally retarded.” Now I grew up in Massachusetts and can spot a Scarlet Letter when I see one and at that moment I saw it, the large R emblazoned across her onesie, the final diagnosis of her mental capacity and perhaps even of her as a person.

As I have enumerated before, Willa has a lot going on, she’s our baby with extras but this one, the “mental retardation” piece has been an interesting one for me as her mother. When we read “The List” I felt a cold chill go through me when I saw that she would be “retarded.” (I keep putting the word in quotes because it is so profoundly not my word. I will stop but please place them there at your convenience.) Why? Why was this the thing that so devastated me? Willa has a 17% chance of getting cancer for God’s sake and yet this nasty ugly word was the thing that made the tears run hot and steady.

I saw the faces of future kids in her future school, mocking or ignoring her. The people on the street looking away from the family that had such a cross to bear. I hear the second person addresses changing to third person addresses, from “How are you baby?” to “How is she?” I saw my future embarrassment and shame, the shocking and constant assault to my vanity and in that the memories of our own childhood treatment of these kids, our adult inability to see what is in front of you.

When I was a young Girl Scout our meetings were held in the special education room of the local small public school. When we, ablaze with badges and hopped up on cookies entered this room we did not make eye contact with the other kids in the hall because they would call us retards for just going in there. We were tainted. And the children with special needs who inhabited the room during regular school hours? I was terrified of them. They were the ultimate other and it appeared that people did not like them. And so, I kept my distance for fear of their stain and the unpopularity it signaled.

As an adult you want people to ooh and ahh over the very devastating cuteness that is your offspring. I was picturing Baby Gap adorable and wanted the world to feel likewise. VANITY! My God, I am ashamed to even admit it but I have to, it’s true. You want people to sneak photos of your kid on the street, steal glances at their perfect form and claim that they have never ever seen a more adorable child, how can I even bare being the mother of such a perfect example of the human form?

Instead I have doctors who do not look at her, do not engage with her because what is the point? At hospitals I see parents of children with Downs who look away and are amazed when I make eye contact and smile. Their faces betray their habitual treatment, people do not do this, strangers do not make contact. The parents smile back at me with deep surprise and my heart breaks. For all of us.

Now let’s flip this coin over. There is the other side too.

We just watched Tropic Thunder. After the controversy I needed to see what the hubbub was all about. So we watched. We also watched the Public Service Announcement that appeared in the DVD extras at the very end of all browsing, the equivalent placement being in a shoe box, placed in a larger box, buried under furniture in the basement of an abandoned house. A cute little montage of children and adults with mental disabilities with an uplifting message about acceptance and respect. (My God, you could see the meeting where this was discussed and approved. It made my stomach turn.) And I was struck by the feast or famine nature of this whole thing. Either you are maligned, dismissed or ridiculed or you are canonized as a living saint teaching all us mentally proficient people a transformative lesson about love, and the way to a fulfilled life. It’s insulting.

Willa is no saint. She’s no retard either. The word is such a black mark because it functions as an indictment, of her future and of her potential. It attempts to say who she will be and what will happen to her. Rules accepted only by the uninitiated. And this is the important secret that no one tells you. It’s all a lie. It means, and I am understanding this more and more, it means absolutely nothing at all: ash in the wind, a fallacy.

What does this mean for my intelligence? The fact that I have a nine month old running my house, getting me to wash her, carry her everywhere, entertain her at will, live for her favor… This kid knows what time it is.

Thanks Willa, for teaching me about this word. It’s important. But you are a little devil and all the more wonderful for it. I promise you will always be my beautiful and completely untainted, unblemished, unbowed perfect daughter in my eyes, nothing less, nothing more.