There are few places on this Earth where the separation of before, now and after is as thin and obvious as what you may find in the neonatal intensive care unit (NICU) of your local hospital. Call it what you will – religious, spiritual or even scientific – but there is something unexplainable and beyond our understanding happening in these little nooks of our local hospitals. Any parent who’s spent time in one; any NICU nurse who’s worked in one; any custodian who’s cleaned one; anyone who’s spent any amount of time in a NICU can confirm this and, perhaps, relate it better than I can.
In 2013, we spent two months with our daughter in the NICU. We practically lived there for over 60 days, surrounded by the busyness of the chiming monitors, the hustle and bustle of the NICU nurses and the crying of babies (and sometimes parents). What I always loved about the NICU was despite all its chaos, the room always seemed to be filled with this relentless peace and calm. It was almost tangible, like you could feel it on your skin and in your chest and the later the hours went into the night, the more present that peace and calm would feel. I’m not sure how this was even possible – how so much peace could exist within so much chaos and uncertainty –
I share that description hesitantly.
I know my experience may be light years from what others have experienced in the NICU and perhaps others – with very good reason – may have only recognized the chaos and uncertainty there. Even more, I know there are too many who’s NICU experience only ended in tragic certainty.
To those mothers and fathers and families who may have lost a child in a NICU or otherwise, I can only say I’m sorry and while we don’t know you, we love you.
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I don’t why, nor can I explain it, but it was among the peaceful chaos of the NICU that I was allowed to have some pretty special moments and conversations with my then days-old new daughter.
In one of my earlier posts, I shared a bit about our experience meeting our daughter Brynn and learning there were some pretty scary prognosis as a result of her traumatic birth. Eventual MRI’s and other tests would show no signs of brain damage and an all but miraculous outcome for Brynn, though it would take over two excruciating weeks get those results.
During that time, there were a few late nights I spent alone with Brynn as I would usually head to the NICU after work and sometimes Melissa would head home to get some rest. In the anxiety of not knowing what lay ahead for Brynn and selfishly what impact our decision to adopt Brynn may have on our own lives going forward, I found myself desperate in those evenings.
Desperate enough to hold grown up conversations with a silent, semi-conscious 1-week old.
And yes, these were conversations not monologues. Maybe it was sleep deprivation or the specialness of the NICU, but I was able to talk with my new daughter.
Obviously, she wasn’t responding vocally and to anyone who may have seen me, it would have simply appeared as though a new dad was ‘chabbering’ with his new daughter. But to me, she was speaking to my heart and my mind and it was as clear to me as day.
Brynn and I talked about our home and our dogs. I told her about her grandparents and aunts and uncles and described the silliness of her new cousins. I told her about our current home and how someday we’d go back to Washington where we’d see mountains every day and play on the beach.
But soon, I ran out of small talk and in the desperation and selfishness of that moment in my life, I put it all on her. I told her this was up to her and she had to get stronger and that we couldn’t do this for her. I asked her to fix this on her own and I begged her to wake up fine the next day.
She was one-week old, barely weighed 4 lbs, had 47 miles of cords and tubes hooked up to her and I put the weight of the world on her.
Finally, I simply told her, “I need you to fight.”
And in my heart or mind or whatever delirium I was in at the moment, she promised she would. She made a handful of other promises to me that are none of your business but sufficed to say, she promised me she would fight.
And in that same heart-to-heart or mind-to-mind breath, she made me promise the same to her. She needed me to fight too. For the longest time I struggled with this and I couldn’t understand what that meant but as clear as day, it was made known to me that I would have to fight for her.
I am not a fighter and I never have been. (In fact, while we were engaged, I made it very clear to Melissa that in fact I did not know how to fight and should we ever find ourselves in trouble in a dark alley, she should run away without hesitation lest she not keep up with me).
But what fight was this moment with my daughter referring to?
This is not a revelation I would learn overnight but instead it would come to me gradually and then finally and completely in these last 12 months. As you may have read in some Melissa’s posts, Brynn was diagnosed with Autism and fairly severely so. While Brynn is an amazingly intelligent and physically fit little being, there is much she can not do or understand. Her senses often turn on her or worse, persuade her to do dangerous things and lash out.
What we define as socially normal fundamentally disagrees with what her senses are telling her. Perhaps her senses are right and the rest of us are wrong, but for now the world is a challenging experience for Brynn.
But she promised to fight and for better or worse, fight she does.
Fortunately for us, I married a f-cking warrior.
As you’ll read in this blog, Melissa fights tirelessly to provide a life and experience for Brynn equivalent or better than her peers. She’s brought school districts to their knees (slight exaggeration), shamed countless “hags” in the Costco line and gently taught other littles how to best interact and befriend Brynn – all of this among countless other fights.
So for me the question still remains – what’s my fight?
I’ve always thought myself to be a patient and empathetic person, sometimes to a fault. But Brynn’s Autism has pushed the limits of my patience and introduced me to the seductive mistress of apathy.
Do not misread that.
Brynn’s Autism has done this and I’ve allowed it. Brynn had nothing to do with it.
So often I feel at odds with myself and angry at the impact of Brynn’s Autism on her life and ours. I’m furious that she doesn’t get to enjoy a traditional imagination and appreciate make-believe tea parties. I’m furious that she tries to hurt herself to answer to the demands of her senses. I’m furious that I often don’t understand what she’s asking me for. I’m furious that other children, although usually kind and gentle, don’t understand or know how to play with Brynn.
On top of my fury, I feel sorry for myself and my family. I feel sorry for my son who can sometimes get an unfair share of attention from Melissa and I. I wallow in the fact that we will never be able to take a normal family vacation. I feel sorry for myself and my wife as we can’t take trips together or taking a night out is such a challenge (though grandparents are a God-send here). I feel sorry for my daughter who may never marry or at the very least, experience romance.
I feel sorry for myself and I’m furious over it.
And there it is.
I’ve found my fight.
My fight is with myself. I have to fight those thoughts of anger and self-pity or those lies that will try to convince me that we, along with our daughter, will never have a normal life.
I have to fight the definition of normal in myself and fight to realize that our life is pretty f-cking awesome and our life is comparable and accountable only to our life before Brynn and not those around us or in the present. I’m not in a fight to provide my daughter and family with the same experiences as other non-autistic families.
God knows they’ve got their fights too.
I’m fighting myself to remember that we have a normal family and our experience is normal and wonderful for us. I’m fighting to focus on the good moments – of which there are many. I’m fighting to ignore the anger I feel when Brynn breaks something or the fear and anguish when she tries to hurt herself. I’m fighting to remember that her fight is far greater than any fight I’ll ever fight.
I’m only fighting me.
And fight I will.