IT’S US AGAINST A PARTICLE OF DUST
To raise a child with additional needs is to inhabit a different country from those around you. You will have your own customs, rules, rituals, habits, mores and vocabulary. People may visit, but they will never truly know what it is to live within the border.
During our time inside this country, my husband and I have developed our own code. It’s a language only we understand.
By and large, we are very different people, he and I. Will loves jazz and sports, in that order; I am highly averse to both, to the point of despair. He’s a Londoner, born and bred; I grew up in a series of small Celtic towns that he would find unthinkably claustrophobic and scant on good coffee. I wouldn’t dream of leaving the house without finessing every detail of my outfit, even if I’m going to the corner shop; he would wear a paint-stained, fraying, decades-old sweatshirt to a party, if I didn’t stop him.
Nevertheless, we share this secret language, which we use every couple of weeks or so, sometimes more. We can conduct conversations in it entirely without words, so that no one else around us knows we are communicating or what we are saying. It is an argot evolved from necessity, from desperation, from love.
We were on a bus recently with our three children. It was late, it was snowing, everyone was tired and the bus was crowded. I was squeezed on one seat with my two youngest children. Will and our eldest were strap-hanging in the aisle.
From behind us came a noise: a crackling, rustling, splitting, then a specific crunch-crunch-crunch. My head spun round on my neck, as did Will’s. We took in our fellow passenger and his snack for a split second before I shot from my seat, hustling my daughters ahead of me, locking eyes with Will.
And so began our wordless conversation.
He tilted his head, meaning, “Is that person eating nuts in the same airspace as our daughter?”
I narrowed my eyes, which meant, “Yes, I’m afraid so.”
He frowned, to say, “Don’t let her breathe in until we get off the bus.”
I shrugged, implying, “Don’t worry, I won’t.”
We ushered our baffled, uncomprehending children off the bus and into the snow, miles from home.
I realize this sounds like a deranged thing to do, so let me explain. When our middle daughter was quite young, we learned that she had an immune disorder. Born with chronic eczema, she was distressed and uncomfortable every minute of every day and didn’t sleep through the night until she was 6.
She is prone to sudden and severe infections. She is allergic to a long list of things, some of which can tip her into life-threatening anaphylactic shock. Just the inhalation of a single particle of nut dust could kill her within 10 minutes. Life, for her, is a series of dangers, strung together, one after another, like beads on a thread.
So our family exists in a state of high alert. Will and I must constantly be thinking about how best to protect her — as well as trying to minimize the impact of her condition on her siblings. From the moment she wakes to the moment she goes to sleep, we are engaged in a waltz with peril. We are trained in resuscitation, in emergency medical action plans, in auto-adrenaline injection.
We never leave the house without her medication. We taught her brother, age 7, how to dial for an ambulance and to say: “This is an emergency case of anaphylaxis.”
Her condition and all its attendant cares is what makes up our secret language, its grammar, its vocabulary, its punctuation. This daily battle on behalf of our daughter is the semantics of our silent communication, which runs on an invisible wire stretched between the two of us, at all hours of the day.
Wherever we are, whatever we are doing — working, having meetings, taking phone calls, watching films, eating with friends — this issue will be there, at the forefront of our minds. It runs through us like mica through granite.
In the interest of full disclosure, the above is the expurgated version of our relationship, edited to make us sound like virtuous and unified parents. The truth is that he and I can also argue like fiends. He is mulishly stubborn and I am unfailingly volatile. He is a stickler, a rationalist, and I have been known to throw things, while not exactly at him, then near him.
We are both exhaustively lexical people; we can dispute the ideal method to cook scrambled eggs for a startling length of time, the subject spiraling outward to encompass other extraneous flaws, neither of us willing to give way. His constant music and iPhone habit can tip me over the edge; my stockpiles of shoes by the front door and penchant for constantly rearranging furniture infuriate him.
There is, however, a sense of solidarity between us on this one issue. We never argue about how best to take care of our daughter, not because we always agree — far from it — but because we know we need to channel every atom of energy into protecting her and her siblings. Family life can be fraught at the best of times, but if one of you suffers a complex medical condition, it is something that affects all of you; every member of the household must face the stress and challenges.
Last winter, Will and I were in the throes of a disagreement that had lasted for more than two days. We whispered furiously at each other when we were alone; we shot dark and freighted looks across rooms; we sent each other long, vexed text messages.
I forget, now, what exactly we were feuding over. Probably some minor domestic detail. All I do know is that the moment my daughter started to feel unwell at the dinner table, the argument that had been so all consuming evaporated, like steam. By the time her throat had swollen and she was losing consciousness, we were assuming our roles, running seamlessly through our well-rehearsed action plan: I administered the adrenaline, he called the ambulance; I raised her legs, sending the blood back toward her heart; he cleared her siblings from the room.
What I’m saying is this: If you are a couple raising a child who for whatever reason — physical, mental, neurological, immunological — requires you to go the extra distance, there will be stress. Enormous stress. You will be tested in every way, beyond limits you didn’t even know existed.
Under these circumstances, you must not, in the smoke and noise and welter of the battlefield, mistake your partner for the enemy. You have to recognize that they are coming out of the same trench as you; they are facing the same enemy.
It’s crucial, when you are under fire, that you don’t lose your head and discharge your weapons at them. Because no one else will understand your situation, the rules of your tiny country, like they do; even your closest friends, sisters and parents won’t have seen you at your lowest ebb.
It is Will who has seen me cry after Googling side effects and survival rates and medical statistics. It is he who has taken the keyboard out of my hands and said, “Enough.” Only he knows, really, how many times a night I got out of bed and applied emollient and wrappings and bandages to my daughter’s skin. Only he knows how little sleep I got. Only he has witnessed my frustration and grief at the cruel ignorance of others.
It is he who has sat with me, beside her hospital bed, his hand gripping mine. Only he, among all my acquaintances, comprehends what it is like to witness our child sink into the clutches of anaphylaxis, to see the color drain from her face, to watch her features swell, to hear her breath rattle and strain, to wait by the door, holding her, desperately listening for the spiraling wail of the approaching ambulance.
So, yes, we can fight like preschoolers about jazz and shoes and sofas and when, in the cooking of scrambled eggs, is the optimum time to put in the butter. Maybe we need to. Maybe these are the small radiator keys that need to be inserted into our marriage in order to drain off the excess steam that builds and fizzes inside its structure.
When it counts — when it’s a situation of life or death — all that stuff and strife is forgotten. The secret code kicks in, and I know one thing: He and I will stand, teeth bared, between death and our daughter, unquestionably united, saying, Get back, get away. You’re not having her. Not today. Not tomorrow. Not any time soon.