Albinism in Pop Culture

(This doesn't count as my Friday post, but I still had to share)


Another villain who looks like a person with albinism. How....original.


Wesley MacInnes as "Iceman" in Smallville

Honestly, my first thought when I saw this was, "Smallville is still on? And people actually watch it?"

Easter Recap

It's nearly a week after Easter and my house is still littered with borrowed dining room chairs waiting to be returned to their rightful owners, a basket full of candy that tempts me every time I walk past it, and a fridge that offends my vegetarian sensibilities by stinking of ham (with undertones of hard-boiled egg). Despite the aftermath, however, the weekend was well worth it.

It started on Saturday with the now-annual Easter Egg Hunt fundraiser at Georgia Street Community Garden in Detroit. We spent the morning at Eastern Market, picking out a locally-raised ham for Sunday dinner and flowers for the table setting. The trip was shorter than we had planned for due to a late start (imagine that - our family running late!), but the boys got to see a marching band, ducks, baby chicks, rabbits, and a heck of a lot of people. We got to see a man shoving a live sheep into the trunk of his Mercedes.

I was immediately indignant. "That's animal cruelty! That sheep is huge - it's not going to be able to breath or move in that tiny trunk!"

Robbie rolled his eyes.

"I don't think they care if it dies in the trunk - they're going to slaughter it anyway."

"Oh....yeah."


After the market, we raced to the Garden and were relieved to find the hunt hadn't started without us.







They boys were a little slow to catch onto the concept, but they pulled in a decent haul and the weather held out. Afterward, we ate brunch in the community store, got a chance to talk to some amazing people, and Fionn did a little dancing.



Thankfully I didn't pay to have the boys' picture taken with the Easter Bunny at the mall. I got this priceless picture for free.



On Sunday, we hosted 20 people (family and Easter orphans) for an egg hunt, dinner and some Easter games. It was fun to see all the babies in their first egg hunt, and having a large orchard across the street from us came in handy.











We enticed a few people to do the egg toss with raw eggs after Robbie demonstrated how to catch the egg without breaking it...and how to not catch it in front of your face. Five minutes later, his dad took one in the face.

Dinner was a lot less messy and by some miracle we fit all those people into our tiny dining room.



Later, as we collapsed onto the couch, we promised each other (as we do after every party) that next time we will scale WAY back.

We won't.

But Now I See

As usual, the aide on the school bus scooped up a sleeping Emerson and sent him staggering out the door into my arms. He said a muffled goodbye as she handed me his backpack...and his white cane.

He started taking cane lessons with his vision teacher a few months ago, but this was the first time I had ever seen it and the first time we would do a lesson at home.

It's hard to explain how something can be so adorable and heart-breaking at the same time. Here was this instantly recognizable symbol of blindness and yet it was so tiny. It was my son's cane.

When we got inside and he realized "Mr. Cane" (as his teacher calls it) had come home with him, a huge smile spread across his face.

"Oh HI cane!" he chirped.

He pushed it across the house for a few minutes like an old pro and then Fionn tried to sneak a turn. Emerson screamed in protest, a tug of war commenced...life as usual again.

After lunch, we went outside with it so that our Vision Teacher could start the lesson the moment she arrived. (And so that she wouldn't need to see the inside of my disastrous house.) She ended up being delayed by another student, so I let the boys wander around the yard for a while.



I instantly noticed that Emerson was much more adventurous than usual - even the times when he wasn't using his cane to explore. He was in and out of the bushes, tapping at the cracks in the neighbor's driveway, and generally pushing the limits of where he was supposed to go. He'd walk up to the imaginary line in the sidewalk that he knows he's not supposed to cross, and instead of obediently turning around, he'd pause like a swimmer about to dive into a pool, look back at me...and then take another step.

I was thrilled to see him exploring and being brave, so it was hard to be too upset about this developing defiance. Still, safety is safety, so it wasn't long before my nagging voice forced him to turn around.

When the teacher finally arrived, we walked around a part of the neighborhood he isn't used to so he could really test his skills. He was great with what they call the "diagonal" method, which is basically pushing it in front. She explained that as he gets older, she'll introduce the tapping technique from side to side, which will make it even safer.

Lately he doesn't like to get out of the stroller and walk (at least not until we reach our destination), so it was a nice change to see him running and exploring everything again. There were times when the cane would just become something that tripped him up or dragged behind because he wasn't actively using it, and a little doubting voice would creep up. "Does he really need this?" "He manages fine, won't this make him dependent again?"

Then he'd take off running, not notice the curb in front of him, and go crashing onto his hands and knees.

Oh. yeah.



We'd dust him off, remind him to keep Mr. Cane in front so it can "see" things first, and he'd be off again using the cane properly. It was fun to see him picking up the technique so fast and his teacher was thrilled with his progress. But trying to teach him how to recognize the difference between a street and sidewalk and how to both "look and listen" for cars was a sobering reminder of all the important lessons still ahead. Thank god for vision and mobility teachers!


Using the technique to explore stairs. Luckily no one was home.

Using the cane out in public was also an interesting social experiment. We brought it to the playground with us and I noticed a lot of furtive glances from the other parents. When Emerson jumped off the swing and headed toward the climbing structure, another mother was watching and instantly started yelling at her running sons to "Be more careful!!"

I'm sure it was confusing to see a little boy with a white cane running up and down the climbing structure without pause. I've heard from people with albinism that having bad vision - but still having vision - is sometimes the hardest part since people don't know how to treat them or think the cane is a ruse. I'm not sure how to address that at this point, but I'm sure life will give me a crash course soon enough.

Meanwhile, we are all learning a new way of navigating - literally and figuratively. We're trying to see things from a new perspective and then turn around and teach it to the boys. Maybe that's why I've developed this sudden love affair with the spring season the past few years. Fall is still my favorite time of year, but lately spring and the Spring Festivals seem to have more significance. The more I learn about religion and symbolism, the more I realize that all these eggs and bunnies and chicks have a special import for me. It's not a Hallmark holiday or a random collection of folklore - it's about femininity and fertility and new possibilities.


Our first spring blooms

Most of us know the Christian story of resurrection, but many religions, including pre-Christian religions, have spring festivals that celebrate the death and resurrection of their deity (or one of their deities). Maybe I'm just more sentimental about spring and Easter now that I live in a state where the winters viciously beat all life and light out of the world for months on end, but I think it's also because my journey through parenthood has forced me to go through a similar cycle. Over and over again, the image of the parent I thought I'd be and the kind of life I thought I'd have dies...and I mourn the passing. But something different and better always triumphs.

And we start again.

Drumroll Please......

You can probably tell by how long it took us to make a decision that we had a hard time narrowing down all the great suggestions. But after much hemming and hawing, we compromised on two different names for the domain and title. I'm sure that breaks all kinds of blogging rules, but that's the joy of being an amateur.

Nams wins for her suggestion of All-Binos, so I now owe her a long-distance favor. We chose this as the domain name because:

1) It's punny
2) It was available
3) It's easy to remember
and 4) I'm sure to attract a new audience of people who can't spell "albino."

Before you lynch me - please note the disclaimer in the side bar!

For the title, we chose Thore's "Vanilla Twice" because
1) It's punny
and 2) If we ever have a third "oops" baby, we can change it to "Vanilla Thrice." And how often does one get to use the word thrice?

Thore - give me a date and I'll be over with my mop and broom.


I've come to terms with the reality that I will never be a good blogger who posts frequently, but I do need to be more disciplined for my own sake. So with my new blog comes a new resolution to post at least one post every Friday. Feel free to publicly flog me if I fail.

Thanks again to everyone for your wit and I hope you enjoy the new and (arguably) improved blog!

We're Embracing

I am deep in the trenches of parenthood - up to my elbows in literal and figurative muck. Just today we finally caught up on our laundry after a simultaneous, family-wide bout with the stomach flu last week that soaked everything. It set in on St. Patrick’s Day, so we got to relieve our college days – the vomiting part, not the drinking part.

We are committed to getting Emerson fully potty-trained this month, so we spend all our time rushing him to the little potty and begging him not to touch anything in public bathrooms. Our goal for Fionn is to get him to sleep in the crib next to our bed instead of being in our bed, so nighttime has been a battlefield in and of itself. He also recently learned the word “NO!!” so that’s now his answer to everything.

There are times when both sides lay down arms and peace reigns once again. Emerson is making huge strides in speech therapy and got a positive progress report from school. Fionn is staying on track with his milestones so far and is a master of flirting with women of all ages. Every once in a while the two of them take a break from pushing each other and actually hug. It usually only last a few seconds before Fionn releases his war cry and throws Emerson to the ground, but we’ll take what we can get.

My children are many things, but they are never boring. Fionn keeps up constantly moving and Emerson keeps us constantly guessing.

A couple of weeks ago during Emerson's private speech therapy, the therapist pulled out a doll house and a family of dolls. Emerson has become fascinated by pretend play, so I wasn't surprised when he snatched up the mom and dad right away. I was surprised, however, when he mashed their faces and bodies together in an apparent display of affection. At first I beamed with pride that my son was so loving.

He had been doing this a lot lately...Thomas the Train needs a drink and blanket...Elmo puts the fireman on his lap for a cuddle (why does that seem dirty in print?) And now this.

“Aww...are mommy and daddy hugging?”

When mommy and daddy wouldn’t stop “hugging,” I started to squirm. The therapist tried to convince him that mommy needed to go up the stairs or that daddy wanted to sit at the dinner table, but he ignored her.

We both started giggling uncomfortably. “I guess mommy and daddy are busy...embracing,” she smirked.

She decided to forcibly take daddy out of his hand and replace him with the baby, but Emerson screamed in protest. As soon as daddy was returned, the couple was going at it again.

My mind started racing...Robbie and I weren’t that physical in front of the kids. Had PBS gone x-rated and I failed to notice? Where was my friend who’s a sex therapist when I need her?!”

I was just about to tell mommy and daddy to get a room already when the therapist took pity on me and removed the doll house altogether.

“Let’s play with balls instead.”

*********************************************************

Yesterday, our Vision Teacher came to see Fionn for his monthly home visit. As he was busy playing with the toys, she and I got to talking about Emerson’s progress. She visits him once a month at school and once at home, so she often provides me with useful information about what’s going on at school.

She confirmed that he’s making a lot of progress and that the teachers are anxious to accommodate his needs. For instance, during group time he sits next to the teacher and/or they make him his own copy of the picture they’re working with. As you can see in the recent pictures I’ve posted, we got him specialized, rose-tinted eyeglasses that cut down on glare and the harshness of fluorescent lights. Both his school and vision teachers say that it’s helping his ability to make eye contact and look at pictures.

The VT mentioned that teaching him to use the white cane has also been great. We’ve talked about this in the past few weeks, but for some reason I suddenly felt a little melancholy. Partly because it’s strange to think he’s learning something so important when I’m not around and I haven’t even seen him do it yet. And partly because the image of him walking around with a cane is a vivid, inescapable reminder of his low vision.

The teacher mentioned that during next week’s home visit, she would bring his cane from school so we could practice with it in our neighborhood. I agreed that it would be helpful for him to expand his practice environment and helpful for me to know what the cane was all about. The melancholy started to dissipate.

Then she talked about how the teachers at his school let him lead the class with his cane whenever they move from one room to the next.

“He loves to explore things with his cane,” she gushed. “And it’s hilarious to watch because all the kids are holding onto a rope, so wherever Emerson goes, they all go. From far away, all you can see is this line of preschoolers zig zagging drunkenly down the hallway!”

I burst out laughing and the melancholy was gone. Things aren’t perfect...most days it feels like we’re losing the war...but the unexpected keeps me going.

As Luke put it, Can the blind lead the blind? Shall they not both fall into the ditch?

Probably. But we’ll have fun along the way.

Bowling with Biners

A few weeks ago, we went to our first-ever NOAH Bowl-A-Thon with the boys. This is NOAH's big fundraiser held across the country every year, so we were excited to finally connect with other NOAH families in Michigan. We were a little apprehensive about the idea of trying to entertain (read: maintain control over) the boys in a crowded bowling alley for that long, and we had no illusions that they would be the least bit interested in the actual game.

But we were pleasantly surprised.





Emerson actually took to the concept enthusiastically and willingly - marching out to the lane during his turn and allowing us to help him throw the ball. Fionn watched this all with great interest, playing the dual role of cheerleader and troublemaker. He was up and down stairs, grabbing at the balls as they shot out of the machine, trying to pull balls down from the shelves, attempting to run out in the middle of the lanes - anything he could think of that seemed remotely dangerous.



He did, however, take the game very seriously. Every once in a while he would find an empty lane, pause at the line, narrow his eyes in concentration, and then suddenly - and with much gusto - swing his right arm around like a limp, useless weight. Try to imagine what zombies would look like if they took up bowling and you'll get the picture.



Of course my three-year-old out bowled me during the game, but my goal was to meet other NOAH families and ensure the boys left with all 10 fingers still attached. I'm happy to report both goals were met.

We expected to meet maybe two other families with NOAH kids and maybe a couple NOAH adults, but instead they were several families. There was even one other family with two children with albinism, which I really wasn't expecting. For a couple of hours, having kids with albinism didn't seem unusual or remarkable in any way. We did still get a few "Are they twins?" comments from other families, but at least no "Where did their hair come from?" or "What color eyes do they have?" No stares or whispers or stupid comments. It was bliss.


All the kids from NOAH families.


All the OCA kids.


Fionn with Uncle Frankie, a friend who generously supported NOAH by bowling on our team.

We were already planning on attending our first big NOAH conference in D.C. this summer, but our bowl-a-thon experience made us even more excited about how much we would get out of the trip. Not to mention we now have NOAH people right in our own backyard that we can connect with on a regular basis.

I'm sure there's some profound bowling metaphor to be made here, but I'll spare us all. (Dammit, I still managed to pun.) Instead, I'm off to honor my sons' new-found passion for bowling by making them matching purple jumpsuits and hairnets. The Biners abide.

A Snowy Day

First, I have to say that I am so grateful for all the name suggestions everyone offered this past month. I proved my theory that while I may not be exceptionally witty, I surrounded myself with people who are.

I haven't been able to bring myself to pick just one yet, but I promise I will be cleaning someone's house soon enough.

In the meantime, I wanted to share some pictures from our winter adventure. We spent 30 minutes getting the boys bundled up in winter gear, 5 minutes trying to convince Emerson to get on the sled (without success), and 10 minutes pulling Fionn around on the sled before we collectively realized we were freezing our butts off.











We were making Valentine's earlier that morning and Emerson decided he wanted to carry around one of the paper hearts all day. It's a miracle it survived our sledding adventure.