Strange Sightings

I have to admit I used to be a theater geek in high school – I was all drama both on and off the stage. Robbie would probably say not much has changed! But one thing I can not seem to get used to is people staring us.

For me, there’s something comfortable about performing on a stage, giving a speech or doing a sermon in church. The crowd is far enough away and big enough that it becomes a faceless mass. Up close, though, is a whole different story. When we walk around in public, I see people look from Robbie to me to Emerson, their eyes squinting in concentration as they try to remember what they learned about genetics in freshman science class. I see people cooing at him, trying to catch his eye and I cringe because I know one of two things will happen: he won’t look at them because they are too far away to see (which makes everyone involved uncomfortable), or he will look at them and the light will make his eyes glow.

This second option elicits all kinds of interesting responses, as I mentioned in a previous post. My favorite recent one was in a subway in Boston last week. A man and his wife and their toddler got on the train and stood next to me, so we struck up a conversation about parenting. When the conversation got around to Emerson’s name and age, the man - standing over Emerson propped on my lap - looked down and cooed his name. To my surprise, he looked straight up at the man and consequently into the overhead lights. The man kind of did a little jump backwards, his eyes got really wide and he stuttered, “His eyes are red! How…how…unique!” He turned to explain to his wife, all in a dither, when suddenly the train doors opened at our stop. I thought about staying on and explaining the whole situation, but instead I said, “Have a good day,” and dashed out.

Of course, there are times when I get paranoid and jump the gun. The other day, for example, we were in line for ice cream at a local shop and Robbie was holding Emerson in his arms (he’s still working on those biceps). I was watching two women watching Emerson and whispering to each other, so I was getting increasingly irritated. Then I heard the woman directly behind us say, “That baby is blind.” I turned to her and said haughtily, “No, he’s not blind!”

Luckily, she was a polite woman who gently explained that she had said, “blonde” not “blind.”

“Yes,” I said, my face growing hot with embarrassment, “he is very blonde.”

At times I get so tired of this routine that I do my best to avoid conversations or I don’t go out of my way to explain things properly. Like a couple of weeks ago when I was answering questions about albinism from a group of people during a party. One man started answering questions for me, which would have been great except that his information was all wrong! He actually told them that sunlight would make people with albinism go blind! I did try to interrupt and correct him several times, but the group had already moved on to the next question. By the end, I just didn’t care anymore to make an issue out of it.

Then I see things like this YouTube video http://www.youtube.com/watch?v=R3rP-lWV9u0 and I’m reminded of how truly ignorant and insensitive people can be. If I don’t educate them, who will? The condition is just not common enough to have roving teams of albinism educators out there.

At least we have technology and the power of the internet. I’ve been able to chat with Lyra’s mom Mashawna and get ideas on how to handle the ups and downs of it all…including her recent idea about creating a “business card” with albinism facts. That way, whether at a party or riding the subway, I can just hand out a card and be done with it. No more repetitious conversations and hopefully fewer myths floating around.

The stares, however, I’m just going to have to get used to. At least with his sunglasses on and all the comments about “What a cool dude!” and “Does he sign autographs?” make me feel like a nanny rushing my celebrity baby through crowds of his adoring fans.

"Thank the gods for blogs" or "Compromise in the Sleep War"

OK, the sleeping on the couch thing did not work. A few months ago I had a cold and slept on the couch. To our surprise, he only woke up once or twice per night, which was a dream come true (no pun intended). But he was having none of that this time.

So at 1am this morning, when I should have been catching up on desperately needed sleep, I turned to the one source I hadn't tapped yet - blogs. All day I had been emailing my attachment parenting support group, researching on the internet and reading through the baby books for any nugget of advice that might help.

The Dr. Sears/Attachment Parenting camp was not much help, unfortunately. Their pat answers - "This too shall pass" and "It's better for you to suffer than the baby" were just not cutting it. I really do believe in the principles behind this approach and Robbie and I are testaments to its success (I slept in a crib from day one and yet find it nearly impossible to fall asleep by myself at 25 years old, while Robbie co-slept until he was a toddler and he has no problems with independent sleep). On the other hand, while the Cry It Out method may be traumatizing, wasn't it just as traumatizing for everyone to be ornery, frustrated and sleep-deprived?

Update: The attachment group did end up giving me a very practical solution: children's tylenol.

I was seriously considering going cold turkey with the crib and the Cry It Out, but I knew in my gut that that wasn't the answer either. Even if exhaustion could push me to that point, Emerson is just not one of those babies that will cry himself to sleep. There have been nights when he will cry because he's gotten overly tired and - even with us right next to him, doing everything we can to comfort him - his cries will just escalate and go on for hours. When we finally find just the right combination to get him to sleep (i.e. swaying side-to-side while bouncing AND patting...or Robbie singing some ridiculous made-up song about the adventures of "Albino Man" sung to the tune of They Might Be Giants "Particle Man") he still whimpers and chokes in his sleep for another good 30-45 minutes.

Anyway, with my options looking slim, I decided to consult the world's best parenting blog (possibly best blog period): Sweet Juniper! I found a series of essays on sleep that made me laugh so hard and were so dead on that I wanted to drive to Detroit, wake these people up from their hard-won sleeping bliss and give them a giant hug. Embedded within one of these essays was a link to another blog called Ask Moxie that gave the most realistic look at children's sleep I have ever read. The basic point of it is that all kids have different personalities, including the way they sleep, so no one solution is going to be perfect for everyone. Every time an expert writes a book, the parents of kids whose personalities fit with that style rave about it as if it were God's gift to parenting. But for all those raving parents, there are an equal number of parents who didn't find success and are made to feel like failures by the s0-called experts, so they silently slink away. Moxie's best advice of all: when people ask how your baby is sleeping - just lie.

Up until a couple of months ago, I would have scoffed at the idea of even reading a blog, much less consulting one on how to raise my child. But last night I found my parenting soul mates and, as if he sensed the change in the atmosphere, Emerson slept the first four hours straight through and then (although still waking up frequently to eat) slept in until 10 am this morning!

I want to kiss Dutch and Wood. I want to kiss Moxie.

I want to sleep.

Quick Co-Sleeping Update

I am banished from my own bed tonight - forced to sleep on the couch so we can break Emerson of this latest habit of waking up every hour all night long to eat! Apparently he thinks I am a 24-hour buffet these days. The idea is that if he can't see/smell me, he won't go looking for something.

Hopefully this will work or he will be facing the crib (or as Jody lovingly calls it "the baby cage") very soon! Wish us luck...

Shallow Thoughts

Well, the inevitable has happened. Two inevitable things actually. The first happened a week or so ago as we were walking around Top of the Park (an outdoor concert series in Ann Arbor) with Emerson in the sling. As “Baby Daddy” mentioned in the previous post, for the most part the sight of Emerson tucked into the sling like a snowy pea in a pod elicits non-stop smiles and coos from passersby. This particular night it was growing dark and the spotlights had just been turned on, so Emerson was staring at them with wide, intense eyes. The light was also at just the right angle to bring out the red glow, which of course attracted even more attention. I started to hold my breath as I plodded behind Robbie and Emerson, watching people’s expressions.

I often find myself holding my breath when his eyes glow in public or when we introduce him to someone who doesn’t know about his condition. In the back of my mind, I imagine the person thinking to themselves, “What’s with this baby?” In one-on-one situations, I can feel the tension as they try to form a question that will politely satisfy their curiosity. Sometimes I am relieved to have a chance to explain and the information comes tumbling out like the rush of water through a broken dam. Other times, I am tired of the whole situation and only give brief, evasive answers. But in public, I can do nothing but helplessly observe human nature at its best and its worst.

On this particular night, the worst was confirmed as we pushed our way through a crowd and a man yelled (yes yelled) to the person walking next to him, “Did you see the eyes on that THING?!” My initial reaction was to think he meant how wide Emerson’s eyes were, but the meaning behind his tone was unmistakable. And to call him a “thing?”

I knew it was coming from the moment he was diagnosed, but this first major experience still hit me hard. It will certainly not be the last time we encounter a thoughtless idiot in public, and it will only get worse as Emerson begins to understand what’s going on. It’s going to be up to us to figure out how best to deal with it and model that for him.

Which leads me to the second part. More and more lately I’ve noticed Emerson’s eyes turning in. It’s only brief and only one eye at a time, but it’s a sign that he will most likely have strabismus – or crossed eyes. This morning as we were leaving for a wedding, I took a picture of him in his adorable, old-fashioned sailor suit (I have to torture him while I can!) The picture was perfect except that it caught him with one eye severely turned in, giving me proof of what I was hoping was only a figment of my imagination. When we got home later that day, I did research on strabismus and found a dizzying array of information on surgeries, eye patches, visual therapy, special glasses, etc. that could help with the condition, although none were a sure bet.

I don’t know why I keep doing this to myself, but I feel compelled to research something, which only makes me overwhelmed. As usual, I broke down into a depression – leaving Robbie to take over mid-way through a diaper change so I could sob on the living room floor. It seems like such a small thing to be so upset about, I know, but it opened this enormous well of grief.

Part of it is that of all the eye conditions that affect people with albinism, strabismus is the only thing he didn’t have yet. I was hoping against all hope that he would escape at least this one, but it doesn’t appear that will happen.

The other part of it is very shallow, I must admit. I don’t want Emerson to have one more thing for people to judge and make nasty remarks about. I want people to see the bright, incredibly funny little boy he’s turning into, not see a little boy with crossed eyes.

I know from my research that he could have surgeries to correct the problem, both for cosmetic purposes and to improve his vision, but we will be faced with tough decisions as parents. Do we live with the strabismus for several years first, attempting to correct them with patches now and visual therapy later in order to avoid surgery? Or do we attempt the surgery as soon as possible, putting Emerson through pain and possibly facing multiple surgeries to get it just right? The awful truth is, I don’t want him to go even one month with crossed eyes, but I know that’s the shallow part talking, not necessarily the good parent part.

Then again, maybe it is the parent part. I feel VERY grateful he’s alive and otherwise healthy, but a deep, primordial part of me wants him to have every advantage he can, even in the way he looks. Maybe it goes back to survival of the fittest and not wanting my baby to be the weak one at the back of the pack who gets picked off by the lion. (I obviously watch too much Animal Planet.) Maybe it’s our society’s obsession with looks or simple parental pride – you know, the kind you feel when your baby achieves some silly milestone like being in the 90^th percentile for head circumference or rolling over a month before most babies.

Unfortunately, the most basic fact is that I worry what people will think and say because I have been that thoughtless idiot myself. I have never yelled anything in a public place, but I have certainly thought equally judgmental things about other people in my head. So I guess if there’s anything I can take out of this experience so far, it’s to reframe my own thoughts about what is beautiful and normal. I am the first to preach strength in diversity, but I haven’t always lived up to my own standards.

Most importantly, I have to let go if other people aren’t able to see Emerson the way I see him. Whatever happens with his eyes, he is beautiful and he is mine.

Baby Slings: The True Story

I'm a self-admitting stroller hater. Not sure what triggered the hatred within me, or even when it happened, but you will find no stroller love in my heart. This leaves me with limited options when it comes time to stroll around town w/ the kid. Huh... by just using the word 'stroll' in that sentence I think I realize the significance of the word stroller. I'm absolutely brilliant. But anyway...

So what's a parent to do if you he/she has no love for strollers? I can think of two options: Carry the kid around in your arms while dreaming of one day having biceps as large as mine, or of course, using a sling. As I already have trouble trying to board planes w/ my boys Pancho and Hopper (right and left biceps, respectively), I use a sling.

Upon first inspection, the average person uneducated in the ways of baby slinging may think that slings are pretty straight forward. Some fabric wrapped around the carrier body with the carried body buried somewhere in it with nothing but a random foot springing up here or little hand reaching out there. Little would they suspect, however, the complexity of snaps, knots, and straps involved in attaching this kid to you. And along with that complexity, of course, comes a hefty price tag. The simplest of the slings we own is one long piece of fabric that is wrapped around your body, tied in a knot, with the kid threaded through and held in place. $40. Seriously... nothing but fabric with stitching around its perimeter to clean up the edges. The infamous ring sling: nearly $100. The Kangaroo Korner 'pouch' sling: $68. Does the wife not realize I have a Bus to rebuild, and that I have half a set of new tires wrapped up (no pun intended) in baby slings??? But I digress.

So yes... my solution to my lack of love for the strollers is the use of a sling. Which, costs aside, aren't that bad of a thing. When others have to seek out elevators, I simply take the stairs. When others have to seek out a parking spot outside an exhibit at the zoo, I simply walk right in. When others are in danger, I am there...

There's another side of the sling, however, that I must deal with. It just so happens that I am the lucky father of the cutest kid this side of the Mississippi. Off on his own, playing in a gutter, people would slam on their brakes shrieking "Oh my! Did you see that baby!?!? What a cutie!!" I know every parent thinks the same of their child, but come on, why kid yourself. So here I am, sling user/abuser, with the cutest kid this side... strapped onto me facing forward most likely wearing his shades and serenading the town with his little voice. Needless to say, we attract some attention. Everyone sitting at the sidewalk patio tables look up "Awww!", others point, some rightfully shake their heads smiling. But what you must realize is that I don't want any of it. Just let me be people. Yeah, he's cute, yeah, its adorable, but I don't put him in here and walk around town to amuse you. I'm just a stroller hater, and until someone comes up with something better (or airport security relaxes a bit) this is it. I find myself walking down the street refusing to make eye contact with passerbyers or acknowledge the gawkers. I'm sure people are torn about me. I must love my kid, as I strap him to me and lug him around town for miles at a time, yet I must not be a very affectionate father, so stone-faced and grumpy and oh my, can you imagine how I must treat the baby momma? She must cry herself to sleep at night doubting her decisions in life while at the same time trying to think of what to cook for dinner tomorrow.

To make things worse, the wife wanted a picture yesterday of the kid lying in the cradle position in the sling while singing himself to sleep. No big deal, except we were on the streets of downtown AA, and the last thing I wanted anyone to think is that this was a novelty to me, that I thought it was oh-so-cute and oh, aren't I just the cutest gosh darn father you ever saw the likes of?

But on the other hand, it could be worse: I could have an ugly kid.

The Diagnosis

A couple of months ago, I sat down to make a copy of some video we had taken of Emerson to send to Robbie’s mom in Texas. Early on in the video is footage of him just a few hours after being born. Underneath the standard-issue pink and blue stocking cap, his dark eyes are bright and blinking. He squeaks and mews, his tiny mouth working like a hungry baby bird. In the background, you can hear me talking to my sister on the phone about what birth was like and how he looks. Of course, the topic soon turns to his unexpected white hair, and I laugh, saying, “He looks like some albino’s baby!”

Watching this months later, I don’t know whether to laugh or cry. I had no idea what was coming! From the moment he was born, I instinctually felt that something was off. In the first week, I even seriously suggested that maybe he did have albinism, but Robbie and my family laughed it off. They pointed out that his skin was so pink, his eyes weren’t red, and none of the doctors or midwives said anything at the hospital. So I put it out of my mind completely and assumed like everyone else that it was our Scandinavian genes.

Then, two weeks after he was born, I began to have difficulties breastfeeding. Our lactation consultant suggested we try a local osteopath who does adjustments on babies to correct their latch. We were exhausted and frustrated and this was our last chance at help before leaving for Chicago the next day, so she graciously agreed to see us that same night. As she did the adjustment, she looked into his eyes and said, “Ah, no pigmentation.” Then she proceeded as if it was nothing. When we got back into the car, we both looked at each other in horror and began questioning what she could’ve meant. We could have asked her right then and there, but in retrospect I think we weren’t ready to know.

With the seed now planted, Robbie hit the internet. We had noticed that Emerson’s entire eye, not just the pupil, would glow red in pictures with a flash, so he found pictures of other people with albinism and showed me how their eyes looked the same. He found pictures of babies with albinism and their shocking white hair looked eerily familiar. He read about the eye problems and skin issues, but I refused to get worried. It was my turn to be the skeptic. And if he did have it, so what? We would just have a really cool, unique kid! Somehow I refused to let the negative information sink in.

On our trip to Chicago, a couple of my classmates suggested albinism as well, noting his unusual eye color. We had begun to see a honey color glowing behind the stormy gray, but we assumed he was just going to have brown eyes.

When we got back, I finally sat down and read the research for myself. That’s when it truly sunk in…it no longer felt so cool and unique. At his next doctor’s appointment, I told her about our suspicions and asked for a referral to a pediatric ophthalmologist. The appointment was scheduled for the same time that my sister came into town, so she came with us.

Thank god she was there to distract me as we waited for over an hour to see the doctor. I kept watching the children playing around me – children with pop-bottle thick glasses, crossed eyes or some completely blind. I couldn’t help but wonder what was in store for Emerson – surgeries, walking canes, patches, glasses. It was overwhelming to think about whether or not he would be able to drive and yet here he was only a month old, still struggling to master the basics of eating, pooping and sleeping!

Finally we were called back, the assistant watching with big eyes as all three of us accompanied one tiny baby. The doctor was unflinchingly honest, almost brutal. He walked into the room, shone a light into the side of his head, and said, “Transillumination.” We knew from our research that this meant albinism, but we were not expecting to be hit with the undeniable truth right away. He did some more poking and prodding, then asked his assistant, “Has Dr. Johnson seen this before? Go get her so she can see it.”

It was like he was a freak show and the rest of us – his family – weren’t even in the room. Finally he turned to us and said his refraction looked good, so he wouldn’t need glasses. We were immediately elated, thinking this meant he had good vision. But we quickly learned that the two were not the same and in fact he could still be legally blind. He gave us the standard spiel on albinism, then launched into a list of resources. When he began talking about services for special needs children through the local school district, I lost it.

The entire time, I was biting my lip and swallowing hard to keep back the hot tears. I was a mother now – it was my job to be the strong one for him. But the idea of him being labeled “special needs” and the challenges of starting school were just too much. My sister comforted me and we both cried together. I don’t think I have ever felt as close to her in my entire life as I did at that moment. We were bound together as sisters and mothers, sharing the immeasurable pain that comes with the immeasurable love you feel for your child.

The doctor stopped and looked at us as if he were seeing us for the first time. He softened his tone, adding, “It’s important to treat him like a normal baby, because he is a normal baby.” We were given instructions on what to look for in the coming months and told to come back at one year. And then it was over and our baby officially had albinism.

The first three months were the hardest. You don’t realize how important eye contact is to socializing and bonding until it’s not there. More than the nystagmus and the unusual coloring and the vision problems, I had the hardest time dealing with the fact that my baby couldn’t look at me. We had good days where I would forget anything was different. Or I would feel strong and remember that it was not that bad compared to what some children faced. Then I would see another baby smiling and watching its parents with intense love and it would throw me into a deep depression.

With time, tears, and a lot of support from friends and family, things slowly got better. The best day of all was the day, at around 3 months, that Emerson was propped up in Robbie’s lap, listening to him talk. Suddenly, he craned his head to look up at him, right into his eyes. We had noticed he was getting better at focusing, but with the eye movement from the nystagmus, it was hard to tell if he was focusing on faces yet. At that moment we finally knew he saw us.

As he improved his ability to focus, he also began to smile and laugh more. And let me tell you, there is nothing better in the entire world than seeing your baby smile. You feel like you can face anything...even the unknown challenges to come.

FAQ

What can they see?

People with albinism have a hard time explaining this because it differs for each person and they have no way to compare it to "normal" vision. The best explanation I've heard so far is that it's like a picture taken with a low resolution digital camera - you know what the picture is, but you can't see the details very well.

In terms of numbers, their vision can range from 20/60 to over 20/400 (which is legally blind) Although both boys haven't been able to perform an actual eye exam yet, the Teller Acuity Cards indicate they are in the legally blind range. So far it appears Fionn's vision is better than Emerson's.

Can't glasses or surgery fix it?

Unfortunately no. Let me try to explain (if there are ophthalmologists out there who want to correct me, please feel free!) For the average person with bad vision, it's the front of the eye where it focuses that is affected. This difficulty focusing makes their vision blurry.

For people with albinism, the retina and the nerve pathways from the eyes to the brain do not develop normally. This causes them to lack visual "acuity," or the ability to see details. They can also have problems focusing, and that can be helped with glasses, but their overall vision will never be fixed.

If they have severe nystagmus (see below) that doesn't get slower with time, or if their eyes start crossing, there are surgeries to fix those problems. Also, when they gets older, they can get colored contacts that will give their eyes a little pigment and help with light sensitivity.

Why do their eyes "glow red" sometimes?

Their eyes are pale blue, but since there isn't much pigment, lights often shine through and reflect off the back of the eye where the blood vessels are. This is also why their entire eye will turn red if you take a picture using the flash. It doesn't matter if the "red-eye" reduction is on...trust us.

Why do their eyes move around so much?

This is called nystagmus and just about all people with albinism have it. Their world doesn't move with their eyes, but it does affect the quality of vision. Their ability to slow it down is getting better with time and eventually it won't be as noticeable. It does tend to get worse when they are tired or upset, so we have to keep that in mind.

Will all your children have albinism?

Two out of two aint bad! Since it is a recessive gene, every pregnancy has a 25% chance of being a child with albinism. There is no way to test your first pregnancy for it, but now that we know we are carriers, we could find out about future pregnancies. It would require getting an amnio and comparing the baby's DNA to their DNA. But we wouldn't do it...the results would not change how much we'd want that baby.

What other problems are associated with albinism?

They have to take extra precautions to protect their skin from sunburn. (But really all children should be doing this!) Their eyes are also sensitive to light, so they wear extra dark sunglasses and hats outside.

Developmentally, Emerson has been behind while Fionn has been on track. No one seems to know if Emerson's delays are related to vision or not, but our anecdotal experience indicates that poor vision often affects fine motor and sometimes speech development. Having poor vision also certainly affects social development (how can you tell what social cues someone is giving you if you can't see the details of their face?) However, we are working with a team of therapists and have heard from other parents that almost all children with albinism eventually catch up.

Despite some general myths out there, the boys are not totally blind, they don't have to stay inside during the day, and it doesn't affect their intelligence. They also aren't arch villains and they don't have magical powers. Yet.