What I Didn’t Say Before

I’m afraid. I’m afraid because I’ve brought a child into the world who may never develop the life skills to care for himself. I’m scared because I can’t promise him I’ll be here tomorrow and we’ve lost six long years to not knowing. Six years to denial. Six years to “it’s just a little speech delay.”

I’m scared of that word. Retard. I’m scared of hate, and exclusion and closed minds. I’m scared of you.

His big sister, Cleo, is smart. The kind of smart that worries me. The kind of smart that if it can’t find it’s purpose might just flail wildly in the world and never make a mark. She’s fascinating. And she’s in a perpetual state of existential crisis. Most nights when I lean in to give her a goodnight kiss she whispers her fears in my ear. “I don’t ever want to die. I don’t want to get old. I don’t want to grow up.” I could do as her dad does and joke that she doesn’t have to. “Then don’t!” he’ll say. “I certainly don’t plan to.” And he laughs. But she knows it’s a lie. So I just squeeze her and remind her again that she won’t have to worry about these things for a very long time. A half-truth.

Then it’s time to say goodnight to Huey. I lean into his bed and he wraps his little arms around my neck, his fat cheek pressed against mine so that it hurts, his stout little body rigid and sincere. I can feel his hot breath on my neck, and he whispers something about monster trucks. I tuck him in and reassure him that he may play with his trucks again tomorrow while my heart whispers a prayer. “Please, little man…don’t grow up just yet.” And now we know that he won’t. Not in the ways that it matters.

“Nobody does ‘wonder’ quite like Huey,” Andy says, and it’s true. If you want to see the beauty in a day I know just the guy you should spend it with. And he’s kind. Not in the learned way that kids are kind. When they’ve mastered the art of sharing, and learned how their words can hurt. Bear finds joy in the sharing, and this is what scares me most.

I’ve learned to be Huey’s advocate, his teacher, his planner, his seeker of answers. These things I can do with confidence. But I’m afraid I won’t be able to protect his sense of wonder in this world that seeks to steal it away. Will I be able to shield his extra squishy heart from those who would see it calloused and broken? Will I be able to protect his joy?

The evidence is flimsy. Just last week at the lunch table a group of boys insisted Huey had whispered a swear word in someone’s ear. It seemed plausible. Swear words are cool and Huey doesn’t yet fully comprehend how they can be hurtful. But the boys seemed a bit too giddy, so I turned to Huey and asked him what he’d said.  He grinned with embarrassment, drew his chin to his chest and confided that he’d whispered to his friend “I love you.” When my other children were six I’d have wondered if this was a poorly concocted lie. On this day I didn’t. It wasn’t. So I scooted him closer and told him that “I love you” is the most lovely thing you can say. Then I offered him some ice cream. But I wonder, should I have said something to those boys? Called them out? Was I enough in that moment? Will I ever be enough?

I can’t say what the future holds. And we’ve barely begun to understand what it means to prepare a child with intellectual disability for a lifetime of challenge. But we’ve turned to face the thing from which it is human nature to turn away, and we’ve found that this simple truth remains; Our son is beautiful and worthy, and he’s going to need an army of us to carry him.

If there was ever a case for having five children this is is it. Thank the universe for poor planning and romantic notions. Huey has a built-in army of superheroes.

I’ve spoken to his siblings. They know. I think they knew before I did. Kids are like that. I consider the parts that he will borrow from them; Cleo’s pluck, and Aidan’s wit, and Maeve’s arms wrapped around him, with her matching heart, and grit that dares to be reckoned with, and I feel soothed.  I imagine them together on the day that I am not here, holding each other up. And I am a little less afraid.

Look at it with us, will you? This thing called Intellectual Disability. Look into its eyes, the same deep purple where you will often find stars. Hold it tight when the moment calls, and see what it has to give you back. And when it whispers “I love you” in your ear, know that this comes from a place of the deepest sincerity. Cherish it.





Answers

The warm October day that brought us Huey we’d spent running around town as a family. There’d been an appointment with the ophthalmologist and some last minute errands. The kids had fought in the backseat while the radio hummed, the five of us unaware of the gorgeous little creature the universe would gift us that coming night.

He didn’t cry. He stared out at me past the noise and celebration. And while much was made about the size of his head and his chunky shoulders I looked upon him with recognition. I thought, quite plainly, “of course this is my son.”

His name had come to me first, just a few months into the pregnancy. It was later I’d learned of my Granny’s older half brother who was also named “Huey.” A kind and gentle man by all accounts he’d been killed during WWII. I used to know which battle, but this detail now seems unimportant. He’d sent home a necklace for his little sister that she’d received only after his death. Somehow this detail is most significant of all.

With Little Bear only a few days old, we ventured out to the Whole Foods. He was snug in his Moby wrap, content on my chest as I perused the sandwich menu when an old man, perhaps in his nineties, approached us. I can still remember the deep crevices of this man’s face and his gentle smile. The two studied each other for a moment. There were decades between them and no time at all. The man’s eyes met mine. “You got your little sweetheart there?” he said simply. And I beamed.

The Lumineers “Ho Hey” was top of the charts that fall, and it became our anthem. “I belong with you. You belong with me. You’re my sweetheeeaaart…” I’d dance Bear to sleep on my chest and he’d gaze up at me with his near purple eyes. I’d breathe in the scent of his hair and his sweet exhale.

With the other kids this smell had long faded by age three, the smell of one who needs protection. I’d try to find it when they’d crawl into my bed at night and then grieved the loss of it. At age six Huey still smells like that. When he climbs into my lap I still feel a desperate need to hold him tight. To keep him from a world that doesn’t yet deserve him.

“Oh he’s just your baby.” says the pediatrician, kind, but firm. At age three we’d begun various therapies to grow his speech and motor skills that were now noticeably lacking. We’d discussed the strange movements he makes upon waking, a series of head nods and awkward jerks. I believe I am witnessing seizures, but preliminary tests have revealed normal brain activity. Still, I insist that something isn’t right.

A few months later he has his first grand mal seizure. He’d gone to bed loaded up with Tylenol and Motrin, but despite these measures, the fever had still threatened to break through. I’d awoken to Maeve screaming, and jumped up from bed to find my little boy with his lips contorted, ugly and blue, and every other part of his body overtaken with violent spasm. It was so wholly terrifying I’d been unable make sense of my phone to call emergency services.

Once at the hospital, it had taken him hours to utter a single word, and he’d remained flaccid and barely responsive throughout a series of tests including a CT and spinal tap. I’d selected a helicopter for him from the toy cart. It had flashing lights and a spinning propeller, but even this had failed to animate him. As evening drew near I’d pleaded with the doctor to let us stay. He still hadn’t seemed like himself. I was later told that children who have these types of seizures usually bounce back within the hour. This fact still does not sit well with me.

By age four we’d hit our insurance limit for therapy, but we’d been advised that he was ready for preschool. So, we put him in a little Montessori alongside his sister and hoped he’d catch up in his own time. He didn’t. By age six the seizures had begun to manifest without fever, and his teachers observed some distressing new symptoms. They no longer had confidence that he was best served in the Montessori environment.

Recognizing this as the kindest sort of rejection, and finding ourselves on unsteady footing we threw ourselves into uncovering the cause of his delays. For several months Huey underwent aggressive testing. Piece by piece a picture began to emerge.

On a quiet morning this past December, Andy and I, still nibbling on Christmas leftovers, studied CT images of Bear’s brain. We’d been given a cursory explanation of the findings by phone, but still, we struggled to understand what we were looking at. Andy geeked out over the slides and for a moment it felt like progress. Like if we could just identify this wayward artery for ourselves we could zap it with one of the magic wands that had arrived under the Christmas tree. “Abwa Cadabwa!” we’d say.

About a week later a friendly gentleman arrived at the house weighed down with fancy EEG equipment and we spent three days tripping over wires and working to make sure Bear was distracted so that he didn’t tear off the sensors. At the follow-up appointment, we were told the test revealed “anomalous activity.” Ultimately we would come to realize this tells us very little.

The more difficult news came when we consented to academic testing. We’ve dreaded this process. Knowing that once it is complete Huey would find himself entangled in a web of labels and assumptions, of lowered expectations, and it would be difficult to escape should he ever seek to extricate himself. On the other hand, we needed more information in order to give him the best chance of success. I requested a copy of his results in advance of the official meeting. I know myself, and I’d need a moment to react. There would be a lashing out before my heart could accept.

The report is cold. Without the warmth of the evaluator’s presence, it feels like a butchering. Midway through I looked to Andy who sat next to me on the couch. His face betrayed the same devastation that had produced a lump in my own throat. We spoke in whispers so as not to wake the little man napping in his room. When he did awake I found it difficult to look at him, feeling that I had betrayed his trust. After all, there is no other human who has been privy to any similar such document outlining my own intellectual abilities. This is true for most of us. So I held him tight and covered him with kisses while my heart ached and I grappled with the reality of all that lay ahead.

The following morning I put the kids on the bus and then folded myself back into bed to cry. I tried to identify the precise cause of my grief, but nothing fit. I wondered aloud if it’s because I wished for him an easier path. Slightly hysterical, I insisted that we hide his diagnosis. That it would be unfair to share it. I willed myself to believe for a moment that I was only worried about how other people would view him. None of this is true. The truth is too shameful to admit.

Then I imagined him in class, shuffling around in his little purple sweater, unpacking his belongings from his Incredibles backpack and working hard to fit in. It was show-and-tell day, so in a while, he would bravely stand up before his peers, against whom he’s been measured as “less than”, and he would speak in mixed-up sentences in an effort to connect. He would try to be funny. Maybe they’d giggle. I hoped they’d giggle.

I thought about his little ears, only recently exposed by an overzealous hairdresser, about how they make him seem more vulnerable. I recalled how his shoulder’s slump when he feels hurt. And I imagined how his heart would break if he knew that his mama was at home crying because she’d learned a few silly truths about his brain. For the first time, I realized I didn’t have his back. It was like a stab to the heart.

I remembered then that he’s just as perfect as the moment he was first placed on my chest. That I already know who he is. That I have always known him. I remembered that in his few short years on earth, and with his “limited abilities”, he has already changed our family. He’s taught us to understand that the happiness derived from pride and bragging rights is fleeting. That it can’t ever really be regarded as happiness. But that if we measure happiness by the love that we share we find that it is limitless. He’s reminded us that in the face of immense struggle, you can reach out and touch another human heart. That the name of the stupid battle won’t matter in the end as long as you sent the goddamn necklace.

I consider his diagnosis now and the tears don’t come so readily. Huey’s diagnosis is complicated and nuanced, and will likely change with time. It’s far more complex than I have conveyed here. But to deny the basic findings would be to deny who he is today. I know my little sweetheart with his tremendous capacity to love will find his place. That the love he receives in return will be enough to carry him. This will be his strength.

At this week’s swim lesson I watch as he flails hopelessly in the water. Overwhelmed by the noise and losing sight of the goal, he makes several outrageous attempts to reach the other side of the pool. When it comes time to “show off” their skills, each of the other children try their best to straighten their legs and maintain good form. When it’s Huey’s turn he emerges from a spectacle of wild splashing with a wide grin. The dad sitting next to me turns and says “He just has the best smile.” I think he means it as some sort of consolation. I just giggle and nod. He doesn’t know of Huey’s gift. When Bear gets out of the pool he gives me a soggy hug and I offer a series of high fives. “I do so gweat!” he says. “You did do so great!” I say, and I mean it with my whole heart.