Monday, December 24, 2007
After suffering for years under the tyranny of a December birthday, I swore I would never, EVER have a baby in that month. And then there was Emerson....
This year we celebrated his big 1st birthday and we attempted to have a party for our Michigan clan on December 16. When we woke up that morning, however, we were greeted with 10-12 inches of blowing snow, a lot of unhappy phone calls to make, and a lot of extra food to eat before going out of town in only three days. I was disappointed after the work and money we put into pulling the party together, but at least Emerson didn't know the difference. We ended up spending the day visiting with friends who lived close by, eating cake, and then watching all the video we had made of Emerson throughout the past year - from the birth (it still makes me wince) to his first bites of solid food.
The video was bittersweet in many ways. It was fun to see him grow and change and do his adorable baby things, but it also brought back memories of how painful and frightening those first few months were. Although we still have struggles - the occassional rude stranger staring at us or our frustration as we try to get him caught up on milestones - but the worst of it is definitely over. In fact, we hardly even think about his vision any more! He is making eye contact, inspecting everything in sight, and generally acting like a normal (albeit extremely goofy) baby. I know his vision will become an issue again when he starts walking, but for now things are pretty darn good.
The most important thing is that Emerson gave me the only birthday present I asked for....he learned to crawl on all fours!!!! He started practicing on the 16th in front of our friends, but then took definitive steps forward the next day. When I saw him do it across the room, I danced around the room with him singing a triumphant "Hail to the Chief!" Now we can start working on walking. he he he
Anyway, we are in Utah now visiting family for the holidays. Emerson got a chance to have his own birthday party at last (it was technically a joint party for me, my sister and Emerson, but we all knew who the real star of the show was). Grandma went all out on the food and decorations as always, including getting a nice big cake for Emerson. He was a little scared of it and unfortunately refused to dig in, but he was more than happy to eat it off my fingers.
This time of year is always filled with birthdays and holidays for our family, but it also tends to be the time of year when emotional events happen. I won't regale you with the whole list, but suffice it to say that the past three have been particularly emotional.
Right before my birthday two years ago, we found out that our first pregnancy was ending in miscarriage. On Christmas Eve a week later, I had just undergone surgery due to the miscarriage and we were in Utah for our annual visit. My parents always work on Christmas Eve, so Robbie and I drove to our old church downtown for the midnight service. Before we even got there, the pain killers had worn off and I was doubled up in agony. We were meeting some friends there, so I told Robbie to go ahead while I tried to pull myself together in the bathroom. I ended up spending most of the time in the cold, tiled room listening to the service over the speakers. I did my best to imagine the beautiful, candle-filled sanctuary as the congregation sang carols and the velvet-voiced minister gave his holiday homily. Then he talked about how Christmas can bring up painful memories as well as happy ones. He ended by asking people to come up and light a candle for all those loved ones they had lost this year, so I imagined Robbie lighting a candle for our baby.
When we got into the car to go home afterward, I asked Robbie if he lit a candle and he said yes. I cried all the way home.
A year later during my birthday, I was in the midst of labor and wondering if I would ever meet this baby. When he was born early the next morning, the significance of the timing wasn't lost on me. We were all so, so grateful to finally have our baby. A few days later, we attended the Christmas Eve service in our home church. The minister stopped his homily to hold up the newborn Emerson for the whole congregation to see, but he slept peacefully and was completely oblivious to the "oohhs" and "aahhhs." When we sang "Silent Night," I looked down at him and cried.
This year during my birthday, I watched a much bigger Emerson try out his new crawling skills and jibber jabber away. A year ago it didn't seem real that I had a son, but even after all this time it still hasn't sunk in! Now it's Christmas Eve again and a thick blanket of snow has prevented us from going to midnight service. Instead, my baby is fast asleep in the next room and I am here getting all sentimental.
It's exciting and a little scary to think where we'll be this time next year and all the changes in store for us. But for now, I'm just grateful for how far we've come.
Thursday, December 6, 2007
The month of November started with my maternal grandmother passing away in Utah. She was 92 (would have been 93 today) and had health problems, so it wasn't unexpected....but still, she was one of those people you think will live forever. We had some wonderful memories together, so I was glad to have a chance to fly back there and speak at her funeral. Although it wasn't the greatest circumstances, I was ecstatic to see my family for a week and let them get some intense Emerson time.
More than anything, it was helpful for me to see how my family interacted with him and get some parenting tips from the pros. It's not that I don't have seasoned parents living around me here in Michigan, it's just that when I stay with my family in Utah, they get to see Emerson around the clock. For instance, my mom took control of the whole not-eating-solids situation right away. Using an expert blend of "distract with one hand and shovel it in with the other" techniques, she was able to get amazing amounts of food down him with no tears. In other words, an actual meal!
My mother, bless her, also took Emerson for a couple nights so I could get my first and only good night's rest in over 10 months! The only bad part was that I was so used to waking up constantly, I still woke myself up throughout the night out of habit. But at least each time I work up I could savor that intensely satisfying feeling of going back to sleep, stretched out on a bed I finally had all to myself. Oh, my cramped arms and legs ache just thinking about it....
One of the best parts about our trip was that it flipped a switch in Emerson and all of a sudden he took an intense interest in everything. He has been army crawling for a while now, but hasn't felt the need to explore much beyond getting from one toy to another. But in Utah he was inspecting the pattern of the couches, creeping over to stroke the plant, studying the lines of the wallpaper. When we got home, this new curiosity continued and he is now ALL over the house. (I've started calling him "my little professor" because when he's interested in something, he uses that little pointer finger to poke and prod while he stares at it with this intense, thoughtful look on his face.)
I know this stage causes a lot of headaches for most parents, but since he's behind in milestones, I'm ecstatic to have to keep a close eye on him as he takes off exploring. I actually find myself happy about the fact that he's figuring out how to open cupboards, attempting to stick his fingers in outlets (don't worry, they're covered), pulling dirt out of the potted plants, etc. He's also become obsessed with pulling himself up on everything. It still catches me off guard every time I turn my head for a second and then turn back to see him standing there with a little smirk on his face.
Anyway, after the excitement of the trip wore off, Emerson and I both came down with colds. They started out very minor, just a little ache here or a runny nose there. We were still able to spend Thanksgiving making the rounds with family, eating the most amazing gourmet dinner, and watching Emerson trick people into taking his hands and walking him all over the house (it's a complicated technique, but effective).
But by Friday were both officially sick and miserable. Emerson's never had anything beyond a minor stuffy nose, so seeing him get a fever and become a whining mess was the worst experience. I was also losing my voice just in time to deliver the sermon on Sunday, but luckily Robbie helped me recover it just in time.
Emerson did well during both services and - despite some technical hitches at first - my sermons went well. In fact, we had an amazing experience during the second service after a section on Native American oppression. I was just about to move on to the next topic when one of the congregants yelled out to me that a fox had emerged out of the woods behind our church. We all clustered by the side windows to watch this incredible animal walk toward the sanctuary, then stop and curl up in a ball in the sun while still watching us watching him. I was able to continue the service and incorporate the sighting into my sermon, and the fox continued staring at us as if he were listening intently. The simple gifts of life....
Unfortunately, with all the excitement of the day, Emerson and were going downhill again by the time we got home. He just wanted to nurse or sleep non-stop and we couldn't put him down for even a second. It became exhausting, literally draining for me, and heartbreaking. By Tuesday we finally got him into the doctor and discovered he had his first-ever ear infection! We felt horrible for not suspecting or doing something about it sooner, but he hadn't been pulling at his ears or crying like most babies.
The good news is, the doctor gave him a treatment plan to help him feel better quickly. The bad news is, the non-stop nursing and coddling have undone MONTHS of hard work that only recently got him to the point where we could put him down and he would usually go to sleep by himself, was only getting up twice a night for feedings, and was able to eat at least one meal of solids a day. Now we are back to square one again...heck, we are probably a few steps behind square one. Oi vay.
At least we have his personality back again. And what a personality it is! This child knows all about dramatics and how to use them get what he wants when he wants. He is also stubborn as hell, but I'll save that for an upcoming blog. The other day, I told Robbie as I was struggling with Emerson, "I've never wanted to strangle someone and kiss them at the same time...except with you of course."
And that's just it...he looks and acts just like his father. He goes around with this smirk on his face most of the time like he's up to something or he'll just sit there and laugh to himself with these deep chuckles. A couple of weeks ago, for instance, Robbie was holding him when he started to cry for me. As I held out my arms to take him, his tear-stained face immediately went from agony to his little smirk - as if to say, "suck-ah!!" The child is already a smart-ass and can't even talk!
I could go on about his antics, but since this post is already long and I'm starting to feel like Kathy Lee Gifford telling Cody stories, I'll stop here for now. December is already speeding by too fast and we've been plunged head-first into the holiday season and end of the semester. Not to mention my baby is turning one in less than two weeks! But I promise we'll post more soon.
In the meantime, Happy Holidays to all and to all a stiff drink.
Monday, October 29, 2007
We got a visit from "Aunty" Julia:
Emerson got to participate in his first protest:
He played with his cousins during the Jennings' family reunion:
The old "Baby Posse" got together...first Colin came to visit:
Emerson enjoyed the new outfit from Grandma:
He made his first visit to an apple cider mill:
Hung out with the pumpkins:
Then we carved our family of pumpkins:
Unfortunately, the neighborhood squirrels had their way with them:
Yes, the littlest pumpkin is white on purpose :)
We took a Fall walk when the weather finally got cold:
Emerson practiced his speaking skills:
And at the end of it all...we were exhausted:
Thursday, October 25, 2007
Right now Robbie is probably sipping a margarita on a private beach at his resort in
While we have many fun pictures to share as a way of showing what else we’ve been up to this past month, I am too tired, busy and frankly technologically impaired to load and compress the pictures myself. So while I await my darling’s return, I will just share a couple thoughts. I know, everyone has been begging “Baby Daddy” to share his wit again, but since he’s soaking up the sun, you get me instead.
First, we finally got Emerson going with his Early Intervention therapy. We started this process months ago, but the school district was having some…let’s call it “communication issues” among the various people involved, so we fell through the cracks. After making some calls, filling and refilling out paperwork, we got a formal evaluation at last.
It was sort of an intimidating process – Emerson sat in the middle of this playroom while a speech therapist, occupational therapist, physical therapist and coordinator (his visual therapist did hers separately) all interacted with him, observed him, observed me, and asked me questions. When they asked about an area that I knew he was behind in, it brought up a mix of emotions. On the one hand, it was good for me to talk about his delays as much as possible to ensure he gets the help he needs. But on the other hand, I couldn’t help but feel a little defensive and like a flunkie parent.
Don’t get me wrong, they were incredibly nice and helpful people, but when you get lectures about “tummy time” and people scribbling notes about everything you and your baby say and do, it can be disconcerting. I assume his delays are due to the albinism since many other parents of children with albinism have had similar struggles, but since we have no other non-albinism children of our own to compare to, I can’t help but wonder how much of it could be due to our parenting.
Add to the evaluation situation the fact that we were in a brightly lit room that bothered Emerson’s eyes, he was tired and close to nap time, and he is going through stranger anxiety - and you have a recipe for a recalcitrant baby who scrambled over to comfort nurse every five minutes. When we got the final report back at our home visit yesterday, I was surprised to find even the nursing sessions noted in each therapist’s report. Our coordinator explained that it wasn’t an admonishment, just a note to make sure I was “pushing” his tolerance further and further during future sessions.
I was also surprised that the delays they noted went even beyond what I had observed. The coordinator was quick to note that he hadn’t fallen extremely far back yet, but it was enough to warrant therapy. I agree and that is why I contacted them in the first place, but it was still hard to see it all in print.
Anyway, Emerson has already been making progress on his own lately, so I think the regular therapy sessions starting next week will give him a real boost. I think part of the reason I am feeling so vulnerable about it right now is that I just got back from another "playdate" with a fellow mom and her baby. I love these dates - it's a chance for me to connect with my friends, vent about parenting, and I think it's good for Emerson to be around other children. But it's always a little hard to see how our friends' kids are transforming into little toddlers while Emerson still seems so baby-ish. I know he'll catch up in no time, but it's hard to watch him getting left behind, trampled and otherwise manhandled by his more advanced compadres.
On a happier front, the Director of Religious Education at my church asked me to share one of my blogs last Sunday as part of a service on inclusiveness and tolerance. It was great to have the opportunity to educate people and I got a nice response. More than anything, however, I valued what I learned from the other people who spoke. We often think of tolerance about the way people look, but we rarely think about behavior and mental issues. One woman spoke about people's reactions to her two children, one with ADHD and the other with Asperger’s. Another woman talked about her son who was diagnosed with bipolar disorder as a teenager and how the acceptance he received from people at church during that time likely saved his life.
After all the speakers were done, the DRE gave a sermon on the topic. One of the things that spoke to me the most was a quote to the effect that we need to give parents a break and not always assume their children’s difficulties are due to poor parenting skills. It reminded me that however fragile and inadequate I feel as a parent from time to time, I still find myself judging other parents. I roll my eyes at the kid with out of control behavior and I wonder how I can avoid making the same mistake that his parents made. But in reality the parents could’ve done everything right and yet something else - something medical or psychological could be going on.
So here’s my parting bit of wisdom for the day. A developmental psychology textbook I’m reading for school right now noted that our Western culture (especially America) is unique for its strong emphasis on the role parents play in their children’s development. We assume if something is wrong with the child, the parents are to blame. Other cultures may see a parental role, but they also see how much environment, society, medical health and inherent personality play. It’s something to think about. Sure there are parents who screw their kids up, and I am undoubtedly going to be the subject of Emerson’s therapy sessions one day, but we all deserve the benefit of the doubt once in a while.
Thursday, October 4, 2007
The other night, we were walking Emerson around
We answered this man’s questions and were surprised that his friend jumped in with several of the answers as well. And he was mostly accurate (he claimed it affected one in 30,000 people, but hey, close enough). As the conversation winded down, the first man shook his head in disbelief and crooned, “That is the most beautiful baby I have EVER seen! You should take him to
He then proceeded to “coootchy-coo” the baby’s cheek with his finger, which caused what’s becoming a familiar scene lately – Emerson having a slow panic attack. His eyes get big, he starts breathing quickly, whimpers a little, and then squeezes out two fat tears that roll down his cheeks. I can almost hear him saying to himself, “Come on, hold it together…be brave.” And then he totally loses it and throws himself into my arms for a comfort nursing session. It’s pretty embarrassing when your child goes through this “stranger anxiety” phase, but at the same time, we can’t help but think his little meltdowns are adorable.
In other Emerson news, he FINALLY started saying “baba” a couple days ago. Most babies start babbling consonants at 6-7 months, so we have spent the past three months endlessly encouraging him to say “mama” “dada” “baba” – anything besides AHHHHHHH. We meet with the Early Intervention coordinator this week to finally get a full evaluation, so he may still get some speech therapy, but hearing him say baba is the highlight of my life right now.
He is also pulling up on things on his own now (although I have to get him positioned since he can’t crawl) and he’s slowly attempting to creep around more. Please send us lots of crawling vibes….I don’t care what people say about how much harder a crawling baby is. Nothing could be harder than a whiny, frustrated, clingy baby who desperately wants to move out into the world, however tentatively.
And with that overly detailed update, I’m off to get Emerson’s resume and headshot ready for
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.
Thursday, August 23, 2007
When it comes to life events, people generally have ADD. As soon as you’re single, they want to know when you’re going to date; when you date they want to know when you’re getting married; when you’re married, they want to know when you’re having kids; etc etc. I am one of the worst offenders, so I don’t presume to judge now that people are asking when baby number two is coming along, even though I am surprised it started so soon.
For instance, at a family event a few weeks ago, my step-mother-in-law was trying to convince me to have them close together by telling me childhood stories about her two children who are roughly a year apart. They were very endearing stories of siblinghood…until she forgot her mission and started telling the only-funny-years-later kind of stories. Like the time her son put Vicks Vapor Rub in his little sister’s hair or the time he cut off one of her pigtails.
When it comes to number two, I’ve been through various stages in the past year. Before Emerson was born, I thought a 3 year spread sounded good; right after he was born, even five years apart seemed too soon! At times I thought he was so cute I wanted to start again right away, or I would think that it seemed logical to keep going now that we are already in baby mode. Right now we are in a “Dear god when is this child ever going to sleep through the night?!” phase again, which has the one benefit of being good birth control.
Every parent who wants more than one goes through the same debate – close enough to be friends or far enough apart to keep your sanity? And then the albinism adds a whole other layer. When he was first diagnosed, I had this intense desire to get pregnant again right away that I couldn’t quite explain in words.
I’ve been reading a textbook about developmental psychology for one of my classes that helped explain it a little. The authors theorize that from the time we are born until our own child is born, we are constantly forming a fantasy of what parenthood means and what our future baby will be like. Every parent, when their child is actually born, goes through an adjustment period as they reconcile their fantasy of the baby with the actual baby. Some just have to do more reconciling than others – like, say, when you imagined a dark-haired, dark-eyed baby and he came out with white hair and a rare genetic condition. :)
It’s basically the same thing that the story “Welcome to
Although the desire still remains for the most part, the motivation has changed. I now feel compelled to provide Emerson with a sibling who also has albinism so he can have someone to relate to him in ways that us “pigmentos” can’t. If our next child doesn’t have albinism, I love the thought of adopting a child who does – especially since in many countries it is misunderstood and therefore children are labeled “special needs” or “difficult to get adopted.” It would be amazing to use our experiences and knowledge to help another child and provide them with a loving home.
With this in mind, having siblings close together who can bond becomes even more important. Luckily, my less emotional and (at least in this case) more rational husband is keeping me in line. That and the sleep deprivation.
I don’t really know what will happen in the next few years, but I do know when the time comes it will be life-changing in ways I can’t imagine even now. How do you prepare yourself for that moment when the midwife looks down in the middle of delivery and says, “Look at all that *blank*-colored hair” – knowing in that moment that whatever color she says will carry a world of meaning…pros and cons for everyone involved.
One thing I do know, though, is that whatever fantasy we create for the next baby, real life will exceed it in unexpected ways. If you had told me a year ago I’d be sitting here with a beautiful snow-white baby screaming like howler monkey, I never would’ve believed you. And yet here I am, plugging my ears and loving every minute of it.
Sunday, August 12, 2007
Yes, Emerson has reached a new stage I like to call “twist and shout.” My sweet, relatively quiet baby that we could take to fancy sushi restaurants or throw on a plane with little anxiety is rapidly disappearing. But overall, we are still fairly lucky considering what we put him through. Case in point - traveling in
I strapped Emerson to me in a sling and began the long trek from hotel shuttle to commuter train to subway system and then through various lines to get
I passed by a man on a bench who took one look at Emerson in the sling and called out “Ma’am, does that thing hurt the baby?” Several smart-ass comments came to mind, but instead I shook my head and pointed out that he was comfortable enough to be asleep. Apparently people make dumb comments about all sorts of things, not just albinism.
I proceeded to walk up and down the hill, looking at the signs and flags hanging from the beautiful brownstone buildings, but I didn’t see any sign of the UUA. Finally I called information for the address and discovered it was right where I had gotten off the subway. In fact, I had passed it about three times already! By the time I hoofed it back up there and realized it did in fact have a small golden plaque that read Unitarian Universalist Association, it was already closed for the day.
I spent the rest of the afternoon playing with Emerson in the Frog Pond in Boston Common, wandering around the
Later, we arrived at the commuter station mere minutes after the last shuttle. We both felt confident as we walked across the enormous empty parking lot and onto the main street. But as we walked, we quickly realized we were in an industrial area that didn’t seem so familiar. With no signs of commercial “civilization” in sight, we were forced to keep walking….and walking….and walking. The road was pitch black except the neon signs of scattered industrial buildings, semi trucks rolled past every few minutes, and in between the buildings were long stretches of overgrown fields.
Luckily Emerson was blissfully unaware of our rising panic since he has passed out on Robbie’s shoulder long before. It was an eerie place – too remote for wandering criminals but I imagined a good place to run into a crazy hobo. This thought was incredibly amusing and yet just scary enough that when a small animal rustled in the field that we were walking by, I actually shrieked in terror.
Finally, we walked into a commercial area and Robbie recognized one of the restaurants as the one he had eaten lunch at earlier that day with his coworkers. Instead of following our gut instinct to head left, he decided he had driven to the restaurant from the other direction, so we turned right. However, within a few minutes, we were back into the industrial zone. Before getting ourselves into worse trouble, we decided to stop at a hotel and call for a cab.
Right before the cab arrived, Robbie bought a bottle of water with what little cash we had left. The woman at the front desk had assured him that if the cab didn’t take credit cards, there was an ATM we could stop at on the way.
When we got in and explained to the driver what had happened, we quickly learned two things: 1) We had actually walked the right direction up until we turned right instead of left and 2) We were not all that far from our hotel. Later, we also learned that the station on the map that we had been referencing was in fact very close – it was just a different station that had been closed down for several years.
Anyway, of course this cab didn’t take credit cards, so the driver pulled into an ATM in the strip mall and Robbie jumped out. As we waited, he told me stories about his long work hours, his horrible case of sciatica, and the piece of gray, frostbitten meat he found in the station freezer and was currently using as an ice pack. I sympathized the best I could while simultaneously wondering what health codes applied to unthawing meat in taxi cabs and why Robbie was taking so long getting the money.
My worst fears were realized when Robbie returned empty-handed and explained that the card had an error. There was another machine in the hotel lobby, so we drove the rest of the way and I waited in the cab as Robbie ran in again. Another long wait and another bizarre conversation passed before he returned empty-handed. The money was in the bank, but for some reason none of our cards would work.
We desperately scrapped together all the small bills and loose change we could find and miraculously found the exact amount of the fare, no more no less. We apologized profusely to the driver for not having enough for a tip and he was very good-natured about it. I sent lots of best wishes his way to fix his sciatica. Or at least for him to find a real ice pack.
We finally stumbled into our hotel room, exhausted, embarrassed and shaken up by the card problem. But our little Emerson was wide awake again and as energetic and happy as we were beat. I flopped down on the bed and played airplane with him above my head, grateful for his squeals of laughter after our bizarre night. Then, as if perfectly timed, he smiled down at me and let loose a stream of spit-up right into my face and hair – and wide-open mouth.
The next day, we did find out the bank cards had been fixed, so we weren’t forced to beg on the streets as stranded travelers. And we did eventually get to see the UUA headquarters - lingering as long as possible in the air-conditioned book store. We also played in the fountains and lay out in the grass of Harvard Yard, ate Italian food in the North End, ordered fresh seafood in
But my favorite highlights of the trip were listening to little kids talking with heavy Boston accents (on par with a kid who looked like a mini Tony Soprano speaking Italian in the North End) and taking a water taxi through the harbor to the airport. Through it all, Emerson remained mostly patient and good-natured, and we spent a lot of time and kisses thanking him for it.
Thursday, August 9, 2007
Tuesday, August 7, 2007
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
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.
Thursday, July 12, 2007
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.
Monday, July 9, 2007
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...
Sunday, July 8, 2007
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
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 90th 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.
Friday, July 6, 2007
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.
Thursday, June 28, 2007
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
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
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
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.
Monday, June 4, 2007
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.
Saturday, May 26, 2007
Well, the excitement of rushing to the hospital didn't happen, but I did have my bags packed ahead of time. The baby dropped around 36 weeks and a week later, the midwife told me it could be any day now. Despite all the statistics and the knowing mothers who told me that first babies always come late, I truly believed this baby was coming early. So of course, as the days passed and the due date got closer, I began to panic. The closer the date got, the more drastic my induction methods became. I literally tried every method I could find: herbs, walking miles everyday on bumpy roads, hopping down an entire flight of stairs in the middle of the mall, eating eggplant, eating spicy food, eating spicy eggplant...I even tried the dreaded castor oil (I mixed it with Dr. Pepper to help the taste, so it was like drinking Bonne Bell's Dr. Pepper chapstick).
Then the due date came and passed. For liability reasons, the midwife had to schedule an induction for almost two weeks past due. As each day went by, the window of time when my parents could come to see the birth or at least visit the baby was growing short, and every day meant he would be that much younger when we went to my school's convocation in Chicago in January. With the pressure (and pregnancy discomfort) mounting, I did the unthinkable and pushed up my induction date by a couple days.
I knew I could face serious consequences for this because it often involves a synthetic hormone called Pitocin, which would throw me into hard, fast, unbelievably painful contractions. I was terrified, but still determined to go throw the medication-free birth we had worked so hard for.
So instead of the bumbling excitement I had imagined at the beginning of my birth, my entourage (Robbie and my mom, who carried in enough luggage for a week's vacation; my dad, who carried in a giant lime-green birthing ball; and a very pregnant me) calmly walked into Labor and Delivery at the scheduled time. Eventually we were settled into a room and I was given a hormone called Cervidil, which ripens the cervix in preparation for birth. They told me they would leave it in for 12 hours to let it work, then we would start the Pitocin, if we needed to, in the morning. The plan was that I would be well rested after a night in the hospital, which anyone who's ever stayed in a hospital knows is an impossibility.
Those first couple of hours after everyone left us to sleep was a haze of machines blinking, nurses shuffling in and out, and the sound of paper puddling on the floor as the heart monitor continuously printed the jumpy black lines that represented his tiny heartbeat. I remember in birth class hearing that sometimes Cervidil can throw you into labor all by itself, but with the bad luck I had so far, I didn't dare dream of that possibility. But sometime in that haze, the contractions snuck up on me and I was officially in labor.
The rest of the night quickly fell into a rhythm: I sat on my birthing ball at the edge of the bed with my head buried in the covers so I could sleep for a minute in between contractions. Since I had the added bonus of back labor (imagine a pitchfork twisting into your lower spine), I would groan or say "oh God," as a signal for Robbie to come do counterpressure. Eventually the contractions were so close and hard that they became concerned about the way it might affect the baby, so they removed the Cervidil insert. I don't remember much beyond that point except that eventually it was light again and my parents were back from the hotel.
Many hours passed, with my parents taking turns with counterpressure to relieve Robbie or taking me on walks around the hallways. I would see women with their new babies and think in illogical despair, That will never be me...this baby is never coming. Morning melted into night, and then the contractions began to slow dramatically.
I had been making progress in dialating and effacing, but suddenly it all came to a screeching halt. So the newest midwife beginning her shift gave me the options: Pitocin, which sounded even more unbearble after laboring without any real sleep for almost 24 hours; breaking my water, which meant I had to give birth within 24 hours to avoid infection risk; or what she referred to as the "French Induction." She described this as going into the bathroom with Robbie, locking the door, and well....*you* know. Nothing seemed less appealing and least likely to work than that option! We opted for nipple stimulation since we'd researched it in birthclass. It's not as erotic as it sounds. Basically they wheeled in an industrial version of a breastpump and I did my best impression of a cow while Robbie marvelled at the mechanics of the pumping mechanism.
It made a little dent, but after a few minutes we could tell we were going to face the tough decision. The midwife came in for another check and squealed in excitement, "This bag is just ready to burst! I could break your water and you'd have this baby out in no time!"
ha ha ha!
So we opted for that option, took another walk, and said goodbye to my parents as they headed out for the hotel again. Within an hour, I had launched into Labor Part Deux. I got onto my hands and knees on the bed to help with the back labor and I stayed in that position...for hours. The midwife kept coming in to check on me and asking me to move positions so I would make progress and to spare my hands and knees, but I wouldn't budge. In retrospect, I know she was right, I would have gone much faster had I changed positions sooner, but my body was so tired that this glacial rhythm was all I could handle.
I stopped letting her check me so I wouldn't get frustrated if I wasn't making progress, and I sunk someplace deep inside. It was like that scene in the Wizard of Oz where Dorothy looks out the window and sees the tornado swirling around her, the characters of her life spinning past. The pain was a darkness that surrounded me and random memories, images, words would whirl past. I only surfaced a couple of times to throw up (I knew from watching enough Baby Story on TLC that this meant I was in transition), and then I eventually gave in to my midwife and agreed to get into the birthing tub.
People tell you that you will lose all dignity in labor, but I was determined to do it right. In fact, I had packed a swimming suit for both Robbie and I. But when the moment came, I knew another contraction was already on its way, so jumped into the tub fully nude (apparently I was naked from a previous shower/tub experience, although I don't really remember it now). Robbie, on the other hand, jumped in fully dressed to help me with the contraction. The labor nurse Sarah was an incredible help all night, even taking over counterpressure for Robbie several times when he would get up to help me and then fall asleep standing in the middle of the room! She got us settled into the tub and then left us to relax alone.
After a few minutes, I felt my entire body convulse. I didn't want to get my hopes up, so I kept my mouth shut until it happened a couple more times. Then I said, "Robbie, pull the red cord, I think I'm pushing." Within seconds of pulling the cord and paging the staff, the quiet room filled with a rush of people and my midwife was checking me. When she told me I was fully dialated and ready to push, I thought No duh. Robbie called my parents and I pushed with everything I had, ecstatic that the end was in sight and the back labor gone.
The next thing I knew, my parents were in the room, cheering me on. My poor father had previously agreed to film what I thought would be a sanitized birth video, so he dutifully pulled out the camera. There I was, naked for the whole world to see, my legs propped up on Robbie's shoulders as he tried to brace me in the slippery tub, and the midwife trying to keep me from drowning because I was so focused on pushing that my head would sink under water. Suddenly someone yelled, "He's got a head full of blonde hair!" and I thought, Who's baby are they talking about? My baby's a brunette! But I didn't have much time to focus on this thought. I could hear the whole room saying, "Ahh, ahh, ahh" as his head would start coming out, then a disappointed "ohhhh" as it would suck back in. Everyone except Robbie, who held his breath every time I would. Finally the midwife said, "You need to breathe!" and I realized she was talking to him!
After about half an hour of this, the heart monitor stopped working underwater and the midwife warned me that I had one more push to get him out or we have to move back to the bed. I gave it my all, and when it didn't work, I stood up and made a beeline for the bed. Robbie went splashing out after me, his sopping wet pajamas making a trail across the room so that someone suggested he change clothes. Somehow he mangaged to do it with lightning speed and then rushed back to help me, his hands ready to catch the baby that was coming any second. It was at this point that he looked around and realized he and my parents were the only ones standing there - everyone else was cleaning up or getting things prepared. After a brief moment of panic, the midwife came to help just as the baby was crowning.
I won't attempt to explain that kind of pain...I will only say that after 30-something hours of quiet moaning, this was the first time I screamed. Watching the video now I realize it didn't last long and I gained relative control when the midwife coached me to grunt instead of scream, but it seemed like an eternity at the time. Luckily it was immediately followed by relief as his head was freed and the room exploded with excitement. Another push and he easily slid out, right into Robbie's arms. After 35 hours of labor, Emerson Porter was born on December 19, 2006 at 6:45 in the morning.
The midwife suctioned him out and we heard first gurgling cries. They passed him through my legs and after some acrobatics, I was lying down with his squirming wet body on my chest. For the first time in days I was fully awake - probably more awake than I had ever been in my entire life. I just stared at him, my little white snow baby, in uncomprehensing awe. I heard my voice saying comforting things to him, but it sounded like another person far, far away. And there was Robbie, my unbelievable partner through it all, standing by my side, sharing those first few moments of parenthood. I had always imagined myself weeping in that moment, but I was totally stunned instead.
And then Robbie, in his true Robbie fashion, said giddily, "That was so exciting, let's do it AGAIN!!!"
Dear God, I thought, I am in trouble.