Friday, March 21, 2008

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.

Monday, March 17, 2008

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.

Friday, March 14, 2008

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:

Wednesday, March 5, 2008

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!

Monday, March 3, 2008

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: