Monday, January 26, 2015


"Has he had much peer interaction?"

I'm sitting in a meeting with Kade's speech therapist and his wide-eyed, concerned teacher. She notes that he may be a year behind, she wishes she had more time with him, he's just not ready for kindergarten. She leans forward, trying to be empathetic and asks absurd questions like, "Can he form complete sentences?" At this point, there's a lump in my throat the size of Texas and tears are stinging, forcing themselves forward when I strain my eyes. I try focusing on the clay paperclip bowl on the desk, likely made by a healthy child who was born ready for kindergarten. 

I feel like Kade was robbed. I want to shake them and show them the last four years of his life. I want to walk them through the agony of waiting; for someone to listen, for answers, for a surgery to be over, for more answers. I want them to feel the desperation of losing a job, too exhausted to get up for work, spending the night with a coughing, gagging toddler. I want them to spend months toting an oxygen tank from place to place. They should try to hold their baby down while someone forces tubes into their noses and throats. Maybe if they left their lives behind and drove away, if they traded their comfort for a chance, they might not stare at me like this. But then again, I wouldn't wish it on the most aggressive of my enemies.

I promise, I did all that I could.
I wonder if they know that kids with CHD are more likely to have a learning disability. 

They don't know that while most kids Kade's age were starting their first day of preschool, Kade was on his way to Washington. Kade was eating at Salvation Army every night and slowly tapering off his asthma medications. They don't know that while Kade was in daycare, he missed a lot of days. Viruses shared by friends put him in the hospital and often, he just slept through it. It exhausted him, that peer interaction. 

I feel that he was robbed of his babyhood. As an infant, his heart was failing; unbeknownst to us or anyone. At nine months, he was surviving and healing from a very successful but traumatic open-heart surgery. By age two, the asthma started and months on end were spent in and out of that haze of hospital rooms and wearing face masks to the grocery store. 

Two years ago, I wrote that, "The sad reality is that your children become exactly who you taught them to be. And not just with interactions at home; it's the movies you let them watch, the the music you let them listen to, where they spend their time and who with, the way you talk about your peers in their presence... They're watching and they're sponges and they're copy cats. Be mindful of your words but even more so of your actions..." 

This is still true, as a good friend reminded me today. But, the sad reality is also that Kade was tossed into a very adult world very early on. He traded his play dates for asthma clinics. When a doctor comes in to deliver the news, your baby is there, picking up on the anxiety. When a nurse rushes in to start force-flow because O2 sats are dropping rapidly, your baby is there to hear some very scary words and he can feel the stress and urgency. 

I'm afraid Kade is still being robbed. He's behind, yes; understandably so. But they look down at him and see what they believe to be an under-educated preschooler, not grasping the concepts, not interacting with his peers and not responding to their childish questions. They assume he's non-verbal, not knowing that he comes home speaking volumes. He knows every word to the Pizza Song they've taught him and he remembers the names of each of his classmates. Abigail is his favorite

Because Kade is absorbing the songs and rhymes, I can only assume he's absorbing this too. He plays on the colorful alphabet rug while they tell me this: He's not ready. He's nonverbal. He's not interacting. He's lashing out. They take him to the special-education wing to use the bathroom, a fact that makes my blood boil. They separate him from his peers and tell him, you are different. You go here. Trying to squeeze a square peg into a round hole. 

I believe in self-fulfilling prophecy. If you sit a child down and repeat again and again that he's not ready, not interacting, that he's shy or doesn't know his colors... then he's not, he is and he doesn't. 

Kade is growing up, fast. His legs are getting long and lean, his feet are big; baby feet no more. Suddenly, his babyhood is over. He's moved on to boyhood and I'm realizing that we aren't ready. I guess we felt that we would move through all of this and have our baby at the end. Here he is: he survived and now you can start over. At least I felt that we would move on and be ready; for preschool, the alphabet, kindergarten. But that's just not so. 

So, we try to move at his pace. We play hours of candyland and remind him that red and orange are different; green and blue are not the same. We read books again and again, can you help us find the letter A? What about J? We remind him that the word Butter does not have a y in the middle. Buh-TER! And he marches about the house singing, "Buh-TER!!" This is all we can do for now. We work and we love. We push and encourage, we have high expectations, we tell him again and again, "You can Kade. You can learn anything." 

Last night at dinner, Kade looked at us and grinned. He said, "I just love you Mom and Dad! You're my best guys!" I winked at his Daddy. Non-verbal, my ass.

Friday, January 16, 2015


Our first night in Seattle, we drove up and down the hills with eyes bleak- exhaustion gripping us by the bridge of our noses and nerves shot with the stress of travel. It was maybe 2am and we were searching frantically for a hotel, a motel, a somewhere that had a room, accepted pets and would take my apparently high maintenance VISA card.

It's true- we didn't plan ahead.

Up and down what I think was the university village, all the way to Lynnwood and back, through so many freeways and byways that our heads were spinning. We had no sense of direction- which direction are we facing? Is this west? Is that water or land? We lost ourselves there. We were angry and maybe scared too. Ian exclaimed we would sleep in the car. I peeked back at Kade, already snoozing,and let out a sob. But he deserves a bed.

 Finally a hotel will take us. They have a pet room for my grumpy dog and a covered parking garage.

Running back to the car to tell Ian, a bright flash goes off in a second story room followed by a POP! Ian stares at me and says bluntly, "Great. Someone just fucking offed themselves." I rolled my eyes at him because that's just the mood I was in. Those rolling eyes turned wide as we were surrounded by SWAT vehicles. We tried to drive off and were greeted by a squad car with two officers asking questions. "Did you guys hear that?" they asked, just as shocked as we were and maybe amused. That was your SWAT team. We sort of giggled, but were frightened. Would they pull us out, search our car? Memories flooded of Ian being thrown to the ground as a teenager, mistaken as a crime suspect while walking home.

They casually turned up the radio and nodded, "You're right! Cool, man. Have a good night!"

It was apparent we weren't in Utah anymore. We drove away in a fit of giggles, the stress rolling from our backs with the sweat.

We returned to the hotel, ready for sleep and a hot shower. The awkward boy at the front desk is playing electronic dance music and remarks that this is his last night, an exciting one at that! "Well, the pet rooms are on the second floor. And the second floor is kind of... police zone right now. So I'll move you to the third! And the parking garage is full. You'll have to park in the alley behind it."

I guess that should have been a red flag. We were just relieved to have a bed to heave into.

So we slept there, with a full-blown SWAT drug raid happening right below us. When we woke, we peeked out at an industrial part of town. From the thin window, homeless wandered the parking lot of Sams Club, cheap motels boasted super low nightly rates and bars littered the small spaces between Used Car dealerships and Office Depot. The night before, in the dark, it was hard to tell where we were; what kind of neighborhood had we landed in?


I later told a friend that we stayed on Aurora and she gasped, "What in the living hell were you doing in that part of Seattle? Like, holy shit man."

I guess we still had a lot to learn.