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.