Language Gaps

In my language classes we learned words like table, went and cold.

We learned how to describe our homes, our families and our interests.

We learned how to talk about our home countries, its weather and how people celebrate Christmas, or not as the case may be.

We learned so many useful things. Things  that I use on a daily basis. Language that helps me go to the shops, to pick up the kids from kindy, to pass pleasantries on the bus.

But I never learned the words for breathing. I never learned the word for bleeding, or vomit, or rash. I never heard the word for seizure.

I never learned these words until I needed them. Until after I needed them. I learned these words in hard places. In doctor’s offices, or in panicked late night phone calls.

No matter how good at a second language you get there are always gaps. Little gaps mostly. Ones that you can work through if people repeat their words slowly, laying the bricks down like a bridge forming in front of you. Or that you can shrug off, walking away from a stranger with a smile, sure that whatever it was being said it was, at least, kind. Or gaps so small you can just skip over them, without slowing down the tempo of your already clumsy conversation.

The gaps might just be single words that you can fill in. A connect-the-dots conversation where you are a very determined five year old. Pencil gripped firmly between your fingers. Eventually the time comes where you are tired and you lay your pencil down. Brain done. Can I watch TV now?

We learned how to ask someone to speak English, or to speak slowly. We learned the common phrases, you’re welcome, how are you, how much is this apple? But we never learned what the operator will say when you call an ambulance at night. So your brain catches when you hear it. A slight panicked freeze in which all you can find are your gaps. Because in these gaps are all the important words.  All the fear of the what-ifs that can’t be spoken out loud, no matter what language you try to say it in.

People are kind. They hide their frustration. There is always that fortune of living where English is widely spoken. Even then, those times when defeat is admitted, or the conversation is too important for my mistakes the gap is there. Each doctor finds their own unique gaps. Our conversations slip and slide as our languages are mixed. A word here and there, untranslatable – do you understand? Mutual incomprehension is, thankfully, rare.

We nod, our brains churning. The glazed stares of parents still in shock. The English slides over us too. Important facts snagging, to be held onto and inspected later. Only now in the moment we must keep moving forward. Any questions? Always. There are always questions. The deeper you go you find that there are not always answers of course.

We are grateful, so grateful, for every person who makes that effort to speak to us in a language we can easily understand. Those who take incomprehensible facts and lay them out in front of us so we can understand them. But it is hard to show grateful when you are scared for your child.

In this we are no different to any other parent. No matter what language we speak.

There are no words for some things, in any language. No word for the measured look in a doctor’s eyes as your questions stumble out. No word for the silences that grow louder as they listen, and measure, and poke. No word for the perspective trick that makes your child appear smaller on a hospital bed, or under a mask, or surrounded by machines, electromagnetic waves aimed directly at the heart.

There is a word we learned. Hjerte.

Then there are the things we don’t need words for. They are the same whatever language you speak. The whispered lullabies. Fingers that stroke gently across foreheads, smoothing down the hair. The questions posed by little arms that clutch to you for safety and the answering beat of your own heart.

A beat that is the simplest, most universal message of them all. A beat that says I love you. I am here.

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No Air

Breathing.

The background rhythm of life.

The first breath. The long awaited wail of lungs opening and the shock of air for the first time. Every parent, I think, holds their own breath until they hear it. Some parents have to wait longer than others. Too long.

Then we hardly notice it. Our lungs continue a pattern, breathe in, breathe out, breathe in, breathe out. It is the white noise of our life. If you were an astronaut in deep space, cut off from radio contact, just this noise would be left to assert you are still alive. The swish of your blood through your ears. The air moving through your nostrils as they flare.

We take it for granted. Unless of course, something goes wrong.

The first wrong thing we noticed was a cough at night.

I’m a lifelong asthmatic and I knew what it was. I was not too worried then. I knew what asthma had meant for me and I was confident we could manage it. We started MJ on steroid inhalers. They helped, but not as much as we would have expected.

We noticed more wrong things. A cough after running. A cough on cold days. Snoring. He complained of being tired, constantly. Between his coughing and a baby our nights were sleepless, leaving three of us with dark rings under our eyes.

More than a year later, the dark rings are still there.

Our son has lived the last two winters with a very real constriction in his chest. We as parents, have faced our own metaphorical one. A slow suffocation of our hopes as we try to care for a son who might be playful and cheerful and loud, but who, try as we might, is never quite well.

Sometimes we allow ourselves to think he is improving, that the most recent change to his medication has helped. Even now I think this might be the case. It is hard to hold onto the faith it will last.

Winter is fading. The grey skies are being replaced with blue. The frost coverings on the ground replaced with purple and white crocus. Hope creeps in with the advance of spring. We will get a temporary reprieve at least, without the cold air that shocks his lungs into submission. New worries arise too though, the memory of days last spring where thick white pollen blew through the air like snow. Will it trigger his asthma this year?

I think back to my childhood, with the delay in diagnosis due to me lacking a typical wheeze. For years I thought I was just an uncoordinated and unfit child, now I suspect the truth has more to do with my asthma not being as well controlled as we thought it was. My failure to keep up in PE class was due to a tightness in my chest that, no matter how hard I tried, I couldn’t quite beat.

I didn’t learn to swim properly until we realised chlorinated pools were one of my triggers. I remember trying to time my breathing to the rhythm of my arms. Always I would end up gasping. Not able to last from left arm, to right arm, to left arm and breathe. I would end up standing in the pool, sucking in the air, watching my peers swim ahead.

MJ is four, and his kindy has a strong emphasis on outside play, whatever the weather. He loves it, and so do we. Lately though the story has changed. He tells us he can’t run as fast, he can’t keep up with his friends, that he was too tired for games. I look at him and I see myself reflected. I see his childhood constricted. I want to set him loose but it is not within my power.

I do not torture myself asking “why’s”. Why him? Why us? Life is unfair and, in balance, I know we are very blessed. Asthma is just the hand we have been dealt. Like any parent, parents of chronically ill children just get on with it. We are all just doing our best. Living our lives. We just have an extra ball to juggle.

We all get extras ball to juggle, sooner or later.

I am not interested in speculating if there is something we could have done differently to avoid it. Asthma and allergy rates are rising, and it is right for scientists to try to understand why that is. Whether it is because we are “too clean” or whether it is exposure to antibiotics or overuse of paracetamol. But on an individual level those questions are meaningless. There is nothing we can point to other than the genes he so obviously inherited from me.

My son has asthma. There is the fact, the truth. Why? Why is meaningless.
Night time arrives. Our bedtime routine with the medicine he resents is fraught. We limp through, he lies down. We sit in the room next door and every evening we listen, on edge. At some point, inevitably, the coughing starts. Every time my heart sinks. It is as though the air leaves the room. Ventolin is a wonderful life saving medication but it is not without side effects. Nervousness. Shaking. Palpitations. Headaches. Insomnia. Would you be surprised to learn that after one, two, three or four doses of Ventolin my son struggles to settle? Too often the price for his breath has been sleep.

I love this bright, sparky, funny son so much it takes my breath away.  Sometimes when I watch him run and play he is so full of life. Other times he runs and then he stops. He just stops. When I see him standing there, when I hear him gasping, again, again, again, it is soul crushing.

We are never more vulnerable than we are in the depths of the night. Asthma visits, like the relentless Nightmare from myth. It rides us hard. My son is left winded, me with the crushing weight of failure on my chest. Failure despite the privilege of access to modern medical knowledge, a socialist health care system, and pharmaceuticals to make this stop. I throw all my balls in the air and hold his medicine to his mouth. I count each breath as we catch them. One, two, three… I feel the coughing ease. I feel his body relax. His symptoms have been kept at bay once more, the Nightmare banished. The air comes back.

We breathe deep, in the dark of his room, in the dark of the night, as he slips back into a sweeter dream. And all that I am left is the weight of a mother’s love.

 

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