Thursday, March 26, 2009

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.


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.

Monday, March 23, 2009

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.

Monday, March 16, 2009

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…


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.

Friday, March 13, 2009

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!

Friday, March 6, 2009

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.

Sunday, March 1, 2009

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?