Video Mania

We finally uploaded all the videos we've been promising. The one below shows vicious Emerson attacking again! For the rest, click on the "12-14 months" link to the right.

I'm Down, I'm Up

Just when life can't seem to get any more complicated, it throws another curve ball. At least that's how I felt a couple of weeks ago as I sat in the allergist's office watching the red welt on Emerson's arm grow larger and more ominous. He had a strange rash in an airplane that served peanuts last November and then another one broke out in January when I gave him a bit of peanut butter and jelly sandwich, so our doctor suggested an allergy skin test. There seemed to be logical explanations for both rashes, so I wasn't concerned by it at all. Then the test revealed he was allergic to peanuts - SEVERELY allergic.

We were handed a huge packet of information on everything to avoid and then given a tutorial on how to use an Epi-Pen during an anaphylaxis attack. I am grateful for modern technology, but the idea of stabbing anything into my son's leg scares the crap out of me! As we prepared to leave the office after an exhausting day, the doctor looked at me and said sincerely, "I'm so sorry."

I couldn't understand all this since no one on either of our families has a history of food allergies. We have a dog and we don't clean compulsively (as much as I wish I could), so there goes the whole "our environments are too clean so our immune systems turn against themselves" theory. We waited the proper amount of time to introduce all his foods. So why a life-threatening allergy for a little boy who already has enough to worry about and set him apart? It was the proverbial straw that broke the camel's back.

In addition to the albinism and the allergy, I was already worried about Emerson's large delays in pretty much all his milestones. The more I worried and researched possible causes, the more hysterical I became. I cried nearly constantly for a couple of days.

At the height of this emotional breakdown, I took a trip down to the local library. It's become a favorite place for us lately because there is plenty of room for Emerson to explore and other children for him to interact with. This particular day a woman was there with her daughter and a son who turned out to be a few months older than Emerson. We started talking the normal mom chit-chat, then it came out that her son had just started walking at 19 months. She went on to say that he had been born with "some issues" that affected his development. As soon as she said this, I wanted to hug her!

We talked a little more here and there as we chased the kids around, but it eventually came out that they had moved out of state and were only here to catch up with old friends. My hopes of future play dates and learning more about her and her son were dashed - although we exchanged emails. But the gift came toward the end as I was getting Emerson ready to leave. She said, "You know how people always say they would never change anything about their child? I feel that way too - I just wish I could change the way the world views him." I nodded and started to cry again - right in front of this practical stranger. It was just what I needed to hear at that moment.

Later, things did get much better. I talked with Emerson's therapists and they said they didn't see anything that would suggest another serious condition yet, so that was nice to hear. They did agree to increase his speech therapy by having home visits, which has already helped.

I also think Emerson somehow sensed my desperation and has been making more of an effort. The past couple of weeks, he suddenly started clapping and waving (things we have been working on for soooo many months), he's willing to imitate more things (like patting and stomping when we do it, or pretending to brush my hair when I brush his), and he's even experimenting a little with the sign language we've been teaching him. I can't believe this is the same child!

Our life really is the cliche rollercoaster - a steep ascent followed by a gut-wrenching drop followed by another steep ascent. And then there are the loops that turn everything upside down....but I'll save that story for a later post.

No Comment...Please!!

Ok, I need to vent once again. I want to go out in public just once without someone stopping me to say,"Wow, he's got really white hair, huh?" One of these days I'm going to lose it and make a snotty remark back.....the possibilities are endless. But honestly, can't people just think these things inside their heads and keep walking?

The other day I saw a little girl with an enormous amount of curly hair - you could spot her from a mile away. I noted it silently, smiled and passed by. I did not feel the need to stop the family in the middle of what they were doing and point out the obvious.

I shouldn't complain, though, because at least these people are not as bad as the ones who stop and have a thirty minute conversation with me about it. I do want to educate people and give them real information about the condition rather than have them whispering behind our backs, but there are appropriate times for that conversation. Interrupting us as we're trying to eat lunch in a restaurant or stopping me while I'm trying to walk around an extremely restless toddler are NOT appropriate moments! I can't count how many times I've been literally wrestling with a squealing, writhing Emerson while someone yacks on and on about their neighbor's cousin's bestfriend who had blond hair and wore glasses because maybe THEY had albinism too and just didn't know it. I don't know either and frankly I don't care!

So I guess what I'm saying is that if you see someone who looks unusual, please resist the urge to comment unless you are 1) able to offer them real information or advice because you know about it firsthand or 2 ) trapped in an elevator with them for hours and honestly need to make small talk.

If you're wondering what all those pithy comments are that I should be saying but don't (yet), here is a great article from Lyra's mom:
http://www.parentofachildwithalbinism.com/2007/08/07/laugh-it-off/

Emerson's 1st Dog Food

Emerson has always been obsessed with the dog bowl. He has a thing for dishes in general (who doesn't appreciate good Corningware?) but the dog bowl is particularly attractive because it's shaped and painted like a giant dog's head.

I've learned to put it away as soon as the dog finishes her food, but this morning I gave her breakfast and turned around to grab something. In mere seconds, Emerson booked it across the room, pushed the dog to the side, and put some pieces in mouth. When I turned back, he had brown drool coming out of his mouth and the dog was looking at me like, "What the hell?!"

I had to hold him back, kicking and screaming, while she finished the rest of the meal. She kept pausing to come over and check on him because I think she was afraid that suddenly the kid had taken over yet another aspect of her life and she was going to get in trouble if she kept eating "his" food. I kept reassuring her that she could go eat, and finally the saga came to an end. Now Emerson's got the taste for salmon-flavored dog food...yum!

Bye Bye Mullet

Unfortunately, I seemed to have passed on my thin, fine, curly hair to Emerson. As his hair grew into the inevitable "baby mullet," my dreams of the long-haired hippie child disappeared - I wanted a clean-cut kid and I wanted him now! It's not that the long, angelic-like white curls weren't adorable, it's just that they only stayed that way for about 5 minutes after brushing them. It takes very little perspiration combined with a winter's hat to create a fuzzy rat's nest when you have hair like ours.

Besides, I was afraid if I let it keep growing, he might someday soon look like this kid:


So, I begged and argued with Robbie and eventually wore him down. And thus we went for our first major haircut at a salon (my mom did the first trim, but she is back in Utah...and Robbie can attest for the fact that blades and hair are not a good combo for me). Emerson did surprisingly well and in no time my black sweater was covered in a white haze. I was so amazed by how well it went I bundled us back up and walked out the door without even paying! Luckily, they didn't notice until I came stumbling back in the door an hour later, apologizing profusely.

The end result was not all that unique, but at least clean cut:

Introducing Mean Mommy

We survived January. For those of you who might not know, I have to spend the entire month of January every year in Chicago for intensive classes. I had been working my stomach into knots over this for months because this time Emerson stayed home. It was just too much to ask my parents or Robbie to entertain a one-year-old in a studio apartment for 4 weeks.

I stressed about weaning him in time (especially when one of my psychology textbooks casually mentioned that improper weaning could be the most traumatic experience of a person's life - no pressure there), I worried about how he would react being away from me that long, and I worried about how we could accomplish all the things we needed to work on with him (teaching him to walk, getting him in the crib at night, getting him to wear his glasses, etc.). And of course because I stressed so much, everything went perfectly.

Weaning happened over Christmas break in Utah - we just kept passing him around and my family took turns giving him a bottle. The boy who was nursing 30x a day went completely to bottles in 2 weeks without even realizing it! When we got back to Michigan, we had one day to unpack, clean and repack before heading off to Chicago as a family. Robbie and Emerson spent the first four days with me and then took the bus back to Michigan. As I watched them pulling away and saw Emerson's tiny hand pressed up against the window, my heart broke. I cried as I waved goodbye, I cried when Robbie's text message telling me everything would be great popped up a few minutes later, I cried during the cab ride all the way back to school. Luckily I chose a cab that was playing mournful jazz on the radio and the view was the lonely lakeshore against a blue-black sky - it matched my mood perfectly.

After a couple of days, the sadness lessened and I was able to enjoy being a full-time student in Hyde Park. It was so nice to be around my like-minded classmates, to have endless intense adult discussions (no patty cake here), and most of all, be able to focus on only one thing at a time! I had also been looking forward to a whole month of good sleep without Emerson around, but my apartment building conspired against me. Between the traffic outside and neighbors who indulged in "relations" on a creaky bed at all hours of the night EVERY night, I was more sleep deprived than ever.

Of course, being in Hyde Park lent itself to many interesting encounters throughout the month. One of my favorites was when I was coming out of my aparment and a mentally disabled man was just coming in. We struck up a conversation and he told me he had lived in this building for over 10 years. Then he proceeded to pull out a small metal flute from his pocket and play a Christmas Carol. When he finished, he asked if anyone in my family took music lessons and I told him no- we thoroughly lacked musical talent. He said we should take lessons and always carry a small instrument with us "so you can bring music to people wherever you go."

Another encounter was at the local co-op grocery store that was closing down. Despite being several blocks away, I ventured over hoping that their close-out prices would be better than the mugging I was getting at the tiny markets by my apartment. It was an eerie feeling to shop in this large grocery store with only one or two random items scattered on the shelves. It was almost post-apocalyptic. As I was scavenging through the hearts of palms and canned herring to find worthy deals, I struck up a conversation with an elderly African-American woman. She told me that the co-op was closing because the university wanted to clear room for a big chain grocery store that would lure people from downtown to Hyde Park. She told me how this store had started as a small group of community members trying to help each other out. And she told me how she herself had struggled as a young mother until she was able to start a co-op with the people in her neighborhood. "You have to fight against the man," she said fiercely, and I agreed.

Meanwhile, back in Michigan Emerson and Robbie were living it up. Robbie told me smugly that being a stay-at-home parent was so easy, so I left him a "to-do" list to accomplish in all his "spare time." I wasn't suprised when I came home for a visit that weekend and discovered that NOTHING on that list was done. He and Emerson spent the entire week together sleeping in, watching tv, and going out with our work-at-home friend across the street. I suppose if I could live that way, staying at home would seem pretty fun too!

That same weekend my parents flew in to take over baby duty for the final two weeks. My mom is a compulsive cleaner, so she asked me to leave a list of household duties in addition to suggestions for fun things to do around town. The five of us ate out and did some fun shopping together for the first two days, but when I went back to school, my mom got down to business. She organized cupboards, sewed torn clothes, repaired odds and ends, salvaged our houseplants, got Emerson onto a schedule, got him sleeping in his crib, got him to use his walker without crying, slyly guilted Robbie into accomplishing the many little tasks he was putting off - in short, she and my father accomplished more in two weeks around my house than we had accomplished in a year. I was grateful and humbled to say the least.

After they left, we had one day of normalcy before we all got sick and my mother's perfect schedule and hard work with Emerson went out the door. Let me tell you, if there is a hell, it is getting sick as a whole family and being stuck indoors for 2 weeks with nothing to do but watch television during a writers' strike. I am still trying to get over a twisted addiction to "Make Me a Supermodel."

The worst part was that Emerson was barely sleeping unless we held him in our arms and he ate almost no solids. We eventually all got better, but he was still deeply entrenched in some bad, bad habits. Then I went to a playdate last week with a friend who has a little girl that is equally dramatic and stubborn. I realized that if she can get her daugher to eat and sleep, I can do it with Emerson. Thus "Mean Mommy" was born.

After one 45-minute long scream session that first night, Emerson settled back into crib life and even slept 6 full hours one night (halleuia!). We cut down on the formula and increased his solids to three full meals a day (the trick was to mix everything with his favorite food - hummus), we started making him wear his glasses again, and I put him back into a mostly regular routine. I never thought I would like that word - routine - but motherhood has broken me down.

And so Mean Mommy trudges on...basking in the small victories and praying that she doesn't traumatize the child for life.

Albinism in the Media

My friend Mashawna created yet another moving and educational slideshow. Please pass it along!



Perception is Not Reality