Sunday, September 23, 2007
It’s been another hectic time in our household followed by some monumental computer trouble, so apologies to those who thought we dropped off the face of the earth! For the days we didn’t have a computer, we used our old laptop to read emails, but we couldn’t type anything since several keys weren’t working. Well, we could, but we would sound like a toothless hag (Im missin te etters) or we had to spend twenty minutes cutting and pasting in letters like a cyber ransom note. But we’re back up and running – thanks to Robbie’s technological genius – on our regular laptop with only a couple missing keys- thanks to Emerson’s prying fingers.
Anyway, a couple of weeks ago, we made yet another family trip to
Since this wasn’t exactly a family fun vacation, we decided to be as frugal as possible and stay in what looked like a cheap but nice Super 8 Motel we found on the internet. When we drove up, we discovered a rotting pink stucco building with halls that smelled like old Indian food and rooms that make you keep your shoes on at all times.
After a long day of taking every psychological, personality, and IQ test known to man, I looked forward to a good night’s rest in preparation for another onslaught the next morning. Instead, we were “serenaded” by our upstairs neighbors at random times throughout the night. And it sounded like some BIG love, let me tell you. Yeeeckk.
The third and gratefully last night we were there, I kept waking up to what I thought was the sound of rain. Finally, I got up to use our closet-sized restroom and discovered the ceiling was leaking. Since we were on the bottom level, I imagined some scene out of a horror movie where the person on the floor above is murdered while running a bath and the water is left to flood onto the floor. I was sure in the middle of my shower, the ceiling would collapse and I would be crushed by the tub containing a bloody, bloated body. When I told the front desk about the leak, however, the woman shrugged and said, “I’ll let Bob know when he gets back from another job.” I guess it must happen a lot.
On the bright side, we were in a suburb that consisted of one giant stripmall, so we could walk to the Jewel or Trader Joe's to stock up on food. I’m not sure which was the better “whitetrash moment”….when we went to Walmart to buy Robbie some shirts (the man was so absorbed in a John Grisham movie marathon on AMC that he forgot to pack any shirts! I’ve heard of people forgetting a toothbrush or a pair of socks – but all his shirts?!)….or if the crowning moment was the next night when Emerson had spit up on all of Robbie’s fancy new shirts, forcing us to walk over to the Jewel to buy grocery store t-shirts, dinner, and mini-bottles of Pina Colada (what can I say – it had been a rough day).
Robbie spent the 8 hours a day I was in session hanging out with Emerson. The first day they made the long trek via several trains to the
On an interesting side note about Emerson, one evening we stopped off to get a snack at a fast-food restaurant. The man at the counter took one look at Emerson and asked, “Does he have to wear sunglasses outside?” When we said yes, the man continued on, saying, “My uncle has the same thing he has. He’s a doctor who lives in
After we got home from this trip, we had a day and a half to do laundry and repack before heading “Up North” – as the Michiganders say. We had purchased a weekend at a cabin on a private lake during our church auction several months ago and hadn’t gotten around to picking the date until recently. After several weeks of hot weather, we of course picked the weekend it temporarily dipped down into the fifties. This put a major damper on our boating and swimming plans, but the lake was beautiful. We spent most of the weekend taking advantage of their amazing DVD collection by watching two seasons of The Office (ahh the great outdoors), took turns taking the kayak for a spin around the lake, and roasted marshmallows under a sky thick with stars.
I think the dogs had the best time of all, though.
So now life is back to its regular hectic pace here at home. Somehow the month of September is almost gone and we have October to look forward to – the only month during the year that I truly, deeply love living in
Friday, September 7, 2007
Emerson must have decided to be sympathetic, because the rest of this week has been filled with hopeful signs. For instance, we went to a sushi restaurant on Tuesday and out of desperation to keep him happy and quiet, I gave him a spoonful of miso soup. He actually ate it - and then cried for more...and more. After gulping down a good portion and chewing on the place mat for a while, he leaned his head on the edge of the table and started falling asleep! Since then he has eaten a good portion of oatmeal and some banana...which is saying a lot for a baby who gagged dramatically at the mere sight of them just days before.
At his visual therapist appointment on Wednesday, he actually crept forward on his stomach a little and has been attempting it (albeit with limited success) ever since. This whole week he has also been practicing his raspberries with his mouth - even giving "zerberts" on my arms for comedic effect. He's starting to attempt the "b" and "m" sounds, and held his arms up purposely when I asked if he wanted up.
The sleeping front is still not so great, but he did go to bed at 10pm once this week, which sounds horrible...but in comparison to the past few weeks, it's a freakin' miracle.
I know these sound like...well, like ridiculously simple baby steps. But these days, we are all about the simple joys.
Thursday, September 6, 2007
"Maybe you have the same feeling I do about people looking at us and assuming that we are mentally handicapped. When I read the posts from some of the parents in this forum about new babies, it sounds as though they have fears or doubts about what that child will be able to accomplish. "
Then the comment to my last post made me realize it was time I try to explain my feelings on this topic. Before I explain, let me preface it by responding directly to that comment. When I decided to start this blog, I made the decision to be brutally honest about my feelings to make it more therapeutic for myself and for others in my same situation. I'm not saying those feelings are always "right" or "good" or even justified, but they are honest.
However, the negative feelings I might express are not what I convey to my son or the people we interact with. Whatever our faults as parents might be, I think Robbie and I do a good job of making Emerson feel loved - so much so that even strangers have commented on the saccharine-sweetness our little family exudes. :) When Emerson is old enough to understand, we will focus on instilling a sense of humor and a positive outlook in him so he can face whatever comes.
That said, being a parent of a person with albinism is completely different from being the person with albinism. I worry (and other parents have expressed this same worry) that the frustration, grief, anxiety, etc. we express in our online forums or blogs are being interpreted to mean we think albinism is a horrible thing. The truth is, as parents, we want our children's lives to be perfect and it's heartbreaking to realize it won't always be and we can't protect them. Every parent will worry themselves sick over the challenges their children face - no matter how big or small. On the scale of things we could be dealing with, I recognize and appreciate that albinism is relatively small.
Another part of it is that humans tend to be incredibly visual - to the detriment of other senses and ways of experiencing the world. For someone like me with average sight, it's therefore scary to imagine life with low vision. It's the unknown. I know Emerson will exceed beyond my expectations and his condition will not define him, but that doesn't mean I won't worry.
Whatever I might be feeling or dealing with in this journey, I try to remember that - like most stages of parenting - it will change by the next day or week or month. I may lose sight of the right path at times, but I appreciate that so many of you are willing to help me along the way.
Wednesday, September 5, 2007
Last week, we took Emerson for his pediatric ophthalmologist appointment to check on his strabismus (eyes turning in). It was his first appointment since his diagnosis, but I went in thinking I was much more emotionally and logistically prepared this time. For instance, I carried in his full Early Intervention packet, a list of questions and paper to write notes on. I knew from the last time that waiting time could be several hours, so I also stocked up on plenty of toys to keep Emerson busy! Sure enough, we rolled in at four and finally went back at around 5 or so they could give him dilation drops. I don’t know why they don’t just do this from this beginning because after entertaining a squirming baby for over an hour in a small waiting room, we then had to entertain him for another hour in the even smaller patient room.
I’m not sure which was worse, though – trying to keep the baby happy and awake, or trying to keep Robbie from touching every button and pulling open every drawer he shouldn’t be opening. Have you ever stopped to look at all the crap in an eye doctor’s room? Well, let me tell you, it’s an ADD nightmare…especially when you’re talking about an engineer who has to figure out how everything works. Since the office is for mainly small children, they had rigged up some of those cheap electronic dogs (the kind you buy in dingy mall toy stores that bark and move their legs back and forth). They had small red lights to replace their noses in an attempt to get children’s attention on a fixed spot. Robbie quickly figured out that pedals installed in the floor operated these dogs, so I cringed as he filled the office with manic barking and wondered if anyone had ever been kicked out a doctor’s office for something like this.
Finally, the doctor came in and attempted to exam a now-exhausted and increasingly ancy baby. The good news, he told us, was that his refraction was still fine – meaning he didn’t need glasses. And the crossing eyes were not bad enough for patching or surgery. The bad news was that glasses are the only option left to help them stay straight – meaning he did need glasses.
My heart sank. Throughout this journey, I keep saying to myself “He has this, but at least he doesn’t have this (fill in the blank) yet.” Now almost all those blanks have been filled. I tried to ask the doctor about contact lenses instead since it’s my goal to get them someday to add color to his eyes and help with light sensitivity. He brushed this off as unnecessary – which I suppose is true from a medical standpoint, but not from a cosmetic/social standpoint. He isn’t the one who has to track down infant frames (not easy we’re discovering) and then try to keep them on an infant who spends his days rolling around on the floor and chewing everything in sight. And he doesn’t have to be in Emerson’s shoes as he faces the world when he gets older. I suppose I am resigned to the inevitable for now, but I will not let Emerson start school in 5 years without contacts even if I have to go to a hundred different doctors. Kids are just too cruel.
The doctor told us to come back in four months to evaluate how the glasses were working, so I decided to ask as many questions as I could think of while we were there. He didn’t know what kind of albinism Emerson has because he’s too young to test, although the other parents on the NOAH website seem to know for their babies. He also didn’t believe in doing nystagmus-dampening surgery, even though many parents have said it changed their children’s lives. I walked out feeling more frustrated than ever. He’s an eye doctor, but not an albinism expert, so who do I believe – the people who are experiencing it with their kids or the medical professional? I think that’s one of the most frustrating things about dealing with such a rare condition…the treatments and theories range so widely that it’s hard to get consistent care and feel like you have all the information.
Like the other things we’ve been through so far, I am slowly working my way through the stages of grief toward acceptance while Robbie skips straight to acceptance. I am glad for his sake and later for Emerson’s sake that he’s so upbeat about it all, but it also makes me feel a little lonely at times. Thank goodness for close friends and family who will have a good cry with me!
So anyway, we’re now on to the great glasses hunt and will post pics as soon as we can get them purchased and on his face. Unfortunately, most baby frames come in bright colors (why not make them with blinking lights to get people’s attention?), are huge on their tiny faces, and are mostly round…which would make him look like Harry Potter with albinism. We have found two (count ‘em two) frames online that look somewhat decent, so now we have to cross our fingers and hope whichever one we order works. And that he doesn’t eat, crush or otherwise abuse these $200 investments on the first day. Oi vay.