Wow. I swear Bunz was just a baby, like a minute ago.
Random little things bring me back to the day he was born. The smell of medical adhesive tape. Extra-crisp apples. The traffic light at the corner of Cooks Lane and Edmonson.
The morning Bunz was born, my husband and I stepped through a doorway into a new world. We didn’t realize it immediately, but over time it became apparent that a profound change had taken place. As Bunz grew from an infant to a toddler to a child, my husband and I grew into new versions of ourselves. Kind of like those born-again Christians, but without the religion. Just regular born-again people.
The transformation looked a little like this:
Before we had kids, we had a cat named Kitty Little. For the first 7 years of our married life, she was our baby. One morning I dropped her off at the vet, planning to pick her up that evening. Except! The vet called me around lunchtime to say that Kitty Little’s blood glucose level was a little off and she might have diabetes. Diabetes! I hung up in tears and left right away, jogging home to grab my car so that I could collect my sick kitty. How awful! Diabetes?! What could be worse??
The days and months after Bunz’ birth were kind of like the “during” phase. Bunz started having seizures a few hours after birth, and the long list of things that could possibly be wrong with him included viral infection, bacterial infection, lung injury, bleeding in his brain, stroke, hepatitis, genetic or metabolic abnormalities and some other things I can’t recall. He had two spinal taps and his IVs were loaded up with medications for every possible issue, until one by one those issues were ruled out and a brain MRI suggested he’d had a stroke.
During these first few days, I refused to stay in my hospital bed and kept trotting off to visit him. I had no patience for wheelchairs or rest and, as a result, ended up with a nurse of my very own. When my nurse asked what she could do for me, I very bluntly informed her that the only thing anyone could do was to make my baby ok. She couldn’t do that, and anyway Bunz had to transfer to a children’s hospital, so we left. As we drove behind Bunz’ fancy NICU-on-wheels to the new hospital, I realized for the first time that my belly was empty and so were my arms.
Ah… the “during” period was rough. So much anger, guilt, fear, shame, regret. How I wished sometimes that Bunz was a cat with diabetes!
But over the years, we’ve gradually entered an “after” period. Not in the sense that the hard stuff is over — there are still days dominated by fear, anger and frustration. There are still things to worry about, things to struggle with, things to fight for, things that are unfair. It’s not fair that Bunz has a standing request to wear headphones the next time he rides in an ambulance or that his younger brother, at age 5, already knows how to wait first for the fireman to come to the door, then the paramedic. It’s not fair that life is complicated for them.
But the “after” period is all about realizing that life in general is not fair, and that’s OK. Because that’s How It Is. Life is unfair in so many ways for so many people, and this just happens to be our own personal brand of unfairness. In our growing, our transformation, we’ve glimpsed a rawness to life that’s often overlooked when everything is safe and warm and okay. At first the rawness seemed tragic. But over time we’ve come to realize that the rawness is amazing and beautiful because it clarifies what’s truly important in life – not competence, not speed, not winning, not being right all the time or even being seen. What’s important is experiencing, surviving, loving. Before Bunz, my husband and I thought we knew love. We thought we understood what it meant to trust. Turns out, we had no idea.
In the past seven years, we’ve felt like the most powerful versions of ourselves and the most powerless.
We can do nothing.
We can do anything.
He’s taught us so much.
All of this is to say that today is Bunz’ seventh birthday and he could care less about how he’s inspired and transformed his family because there’s cake! And presents! He can hardly wait!
I’m excited to introduce you to Bunz, the star of this blog! Having no idea where to begin, I’ve created this handy Top 10 list. Hopefully this will explain everything you need to know to follow this blog.
Top 10 Things to Know About Bunz
10. First, the hard stuff: Bunz was born in 2008, the year my mother-in-law passed away from pancreatic cancer. Having a baby and losing a parent is a lot for one year. But there was more: Baby Bunz had major medical problems at birth. Eventually he was diagnosed with cerebral palsy and epilepsy. All these things made for an intense year. Sometimes I wonder what our life would be like if he didn’t have these issues. As it turns out, it would be pretty boring.
9. Fast-forward 6 years and Bunz is in love with the singer from Icona Pop because she’s such a badass that she crashed her car into the bridge AND DOESN’T CARE. My darling baby boy turned to me the other day and said, with a gleam in his eye:
“Mama, I love her.”
8. Last fall, Bunz informed us that when he grows up, he wants to be a punk rocker:
“Let me show you. I wanna eyebrow ring and a nose ring. And an earring (gesturing for a small hoop at the top of his right ear, and studs on both ears). And my name gonna be Ms. Lee. And I’m gonna be 25. And Mama? My hair gotta be pink. With a candy cane in back.”
7. Bunz would also like to be In Charge. Preferably right now, but also when he grows up. This could entail being a police officer, for example. Or possibly a school principal. His very first conversation with the principal of his elementary school is telling. Things were already tense that day because I was trying to make a case that her rigorous, high-achieving language immersion school was the best placement for my child with multiple disabilities.
Principal, sternly: “Hello Bunz. My name is Principal S. I’m the boss of this school.”
Bunz, casually picking at the bindings of books on her bookshelf: “Uh, NO … I’m the boss of this school.”
Principal: “No Bunz, you’re the boss of yourself. I’m the boss of thisschool.”
Bunz, pretty sure he’s right: “No … I’m the boss of this school.”
A few months later, in the car:
“Bunz, randomly: “Principal S wears little circles in her ears.”
Little Bear: “Haha, why do you say that? Do you want to wear little circle earrings?”
Bunz: Shakes his head, smiling. “When I’m boss I’ma wear big circles in my ears.”
6. More than anything in the world, Bunz loves music. He says he loves me a million times, but I bet he loves music a hundred million and fifty. Before he was born, I mumbled along to hymns and singalongs and mostly just tried to blend in. Then, before I knew it, Bunz and I were belting out songs from the Sound of Music in the YMCA locker room; jamming to Music Together on the street; singing loudly and proudly (to my husband’s complete and utter embarrassment). Fortunately, he is always on pitch. Me, not so much. (“No, it’s a C, Mama. C. Like this. C-C-C-C-C!”)
Here’s a video of him at age 3, sitting down for the first time at a free piano we found on Craigslist:
5. He loves to memorize the most random things. He will tell you the name of that guy he sat next to on the train last week and the license plate number of our neighbor’s car. At age 1 and a half he could say the alphabet backwards and forwards. At age 3, he knew the capitol cities and nicknames of all 50 states. That same year, he memorized the ASL alphabet from a poster on his daycare wall and memorized the multiplication table up to the 10s from a placemat. (He has since forgotten most of the multiplication table, but not the states.)
We would always bring this up in response to #4, and we were always told that memorizing random information is not a Good Sign unless you actually know how to use the information. Around that time, Bunz was using his new-found love of geography to make snarky jokes: “Do Juneau the capital of Alaska?” he’d ask his teacher, then squeal in delight before she could answer. Apparently that wasn’t what the cognitive test people had in mind. When he turned 5, I heard him sound out ‘pedestrian’ — and in that moment, I knew #4 was partly a load of crap.
4. According to standardized tests, Bunz’ cognitive abilities are profoundly low. Or very superior. One or the other. If you ask the teachers at Little Bear’s preschool, they’d probably put him in the profoundly low range because the only word he ever says to them is “triangle.” When we get there, he beams and exclaims, “Triangle!” and they shower him with love and graham crackers. They had no idea he could speak full sentences until a few weeks ago, when I told them. They probably still don’t believe me.
Similarly, a local regional center for people with disabilities placed his cognitive abilities in the 1st percentile and told us he qualifies for intellectual disability services. You can’t beat free shadow aides for the after-school program and summer camp. But also – gosh. Just… gosh.
A more recent test administered by a school psychologist put his abilities in the Superior and Very Superior range for multiple areas, which is consistent with his report cards so far:
But honestly. What would you do with conflicting information like this? Where would you even start to think about your son, his potential, his future? What would you hope for? How hard would you push? We don’t know, so we just assume the best. In our eyes, Bunz is an exuberant, strong-willed, absent-minded genius. He continues to make steady progress in all areas, which is encouraging.
In one of my favorite blog posts ever, a mom writes:
“Wake up! Your kid is off the charts? Burn the charts.”
I love her like Bunz loves Icona Pop.
3. Bunz is a trickster, which goes a long way toward explaining the “Very Low” score for “Understanding Directions” in #4. He’s happiest when pushing buttons, and I don’t mean electronic ones (though he loves those, too). While he’s doing that exuberant, spastic dance in front of you, basking in your attention, he’s actually sizing you up to see what buttons are available for him to push at a later date. Preferably when you present him with a set of directions to follow.
Consider Little Bear, for example. What does Little Bear love more than anything in the world? Knowing the right answer! Little Bear raises his hand in class and talks over the other kids like nobody’s business (I know, we’re working on it). So what did Bunz do? He taught Little Bear all the wrong color names and letter sounds. On purpose. With a devilish grin. For the longest time we thought Little Bear was color blind and dyslexic.
2. Bunz won’t eat anything but cheese and yogurt. At least right now. Hopefully that will change after a few months of feeding therapy (aka “Food School”). A year ago, back when he loved “SAUSAGE-EGGS!” and ate almost everything except green veggies, I didn’t understand picky eaters. I thought maybe the parents just weren’t trying hard enough. Or maybe they were Vegan. Or maybe they kept too much junk food in the house, so naturally the kids weren’t going to want real food.
Now look at my shopping cart:
See this? This is my punishment for being so judgmental before. For attending Vegan Potlucks and cringing when my charming little carnivore shouted, “SAUSAGE-EGGS! SAUSAGE-EGGS, MAMA!”
Now Bunz refuses water and won’t even drink juice (juice!) unless it’s topped off with the head of a pretty blonde lady. He has a collection of “ladies” that he brings to school and keeps with him during carpet time. I can only imagine what the other kids think about that.
Incidentally, the clinic psychologist said that some kids will actually starve themselves rather than eat. (She said nothing about his fascination with blonde ladies.) Kids like Bunz tend to have sensory issues or gastrointestinal irregularities, she said. But just for the record, it’s actually a Thing. It’s not that we messed up as parents. Some kids just won’t eat anything. Even the oh-so-tempting junk food in my shopping cart.
I should put this stuff back.
1. Bunz charms everyone he meets. Without exception. Twenty-something drama queens who can’t stand kids find themselves catering to his every need before they even know what hit them. Watch out or you could be next. You’ll see a random kid running toward you on the street and his rapid approach will activate your fight-or-flight response, but the exuberance in his face will keep you rooted to the ground. If only out of curiosity. “Come!” he will exclaim, grabbing your hand. You’ll look at me, hesitantly, wondering whether it’s ok to say no. Or yes. Shit. What should you say. You’ll be totally confused. “Oh! Uh, haha, I can’t come! I have to go to work/meet my friend/feed my guinea pig!” you’ll say, and feel really badly for saying it (promise me you’ll feel bad. You will, right?). Then, after allowing him to give you a hug and a smile, I will pry his little hands from yours and drag him down the street, on toward his next best friend. Welcome to Team Bunz. 😉