Saturday, January 24, 2009

In his own right

I know this is a cliche, but it's amazing how different two people who come from the same parents can be. Fionn is completely different from Emerson in every way (except of course the albinism). Whereas Emerson took forever to kick in the womb and sometimes went so long without moving that I had to drink a gallon of orange juice to get him going, Fionn kicked non-stop from about 14 weeks gestation until five minutes before being born (he actually kicked me all the way down the birth canal, and yes, it's as painful as it sounds). Whereas Emerson was happy to lay on a blanket and take in the world for the first three months, Fionn wants you to hold him and interact with him CONSTANTLY. The list goes on and on.

One of the biggest differences is in their ability to focus. Like most babies with albinism, Emerson's nystagmus and slower vision development meant he didn't focus on our faces until he was four months old. Those initial months were agonizing to say the least. As my mom reminded me recently, there were several times that I would break down on the phone and sob that he didn't even know I was his mother. But the moment he made eye contact (and I remember that moment vividly), our relationship completely changed.

I was prepared to go through this again with Fionn, but to our surprise, he seems to be able to focus on us already. He wants to make a lot of eye contact and is giving us drooly, muppet smiles. I'm telling you, eye contact and smiling are nature's brilliant way of ensuring a baby's survival!

It will be interesting to see what Fionn's personality develops into - especially considering Emerson is just about the goofiest child I've ever met. For now, we are banking on a bright future in politics based on his uncanny resemblance to Ted Kennedy:

In case you're interested, we will be updating the post about milestones for Fionn as well. Hopefully this will give us some insight on how much of their development is based on personality and how much might be attributed to albinism. Of course, albinism affects each person differently so this is far from scientific, but hopefully it will help other parents in the albinism community.

Thursday, January 22, 2009

We're so proud

Hail to the Chief

It's even more funny now that it's over!

Wednesday, January 21, 2009

Suburban Invasion

I am afraid I am turning into a typical suburban housewife - the other day I watched Oprah AND cried, let my children run around pantless all day, and cooked dinner in a crockpot. Heaven help me.

Incidentally, if anyone has good vegetarian crockpot recipes, let me know.

Damn it, there I go again!

A rose by any other name....

This is an interesting article about the use of the word Albino. Andrew hopes to put the full quotes in another article for his blog, so I'll post a link to that as soon as it comes out. Thanks Andrew!

Here is an earlier post about the word albino that he posted on his blog:

The Original Off-Color Insult

In case you're interested, here's the full quote I gave Andrew:

I believe that the term albino can be offensive and that it's important for us to educate people about person-first language. I don't get upset when people call our children albinos because they usually know nothing about the condition, but as often as possible I use the opportunity to gently say to them, "They are people with albinism."

However, within our own home, we try to be more playful about the term and hope to teach our children that they can reject the term if they want, or make it their own. I think no matter what stance you take on it, people who are labeled will often use the label for themselves and amongst friends and family, but don't appreciate the casual stranger using it. At least that has been my experience.

If my sons want to use the term in such a way that they can reclaim it and feel empowered, I will support them in that. If they are sensitive about it and don't like using it, I will do everything in my power to educate and correct people. Either way, I hope they feel proud of who they are and the amazing albinism community we get to be a part of.

Wednesday, January 14, 2009

My Own Bob Villa

I just want to take this moment to recognize how incredibly impressed I am with my hunky handyman of a husband. (Note: the above picture is a dramatization, not my actual husband. Although he also looks hot in bell bottoms.)

To date, he has completed a number of renovations, including but not limited to:

Building new railings for our stairs (the previous ones had enormous gaps that were just waiting for an unsuspecting and visually impaired toddler to test out)
Running a new gas line for our new stove without blowing up the entire house
Painting two rooms (many more to come)
Hanging drapes
Connecting new lights
Repairing the foundation in the garage
Assembling an insane amount of children's IKEA furniture
Removing some "what the hell were they thinking?" projects left from the previous owners
Installing an undermount sink and new faucet
Installing a new toilet after removing 40-some-odd years of toilet gunk (yum)
and finally, figuring out how to put a dog door in a door with recessed panels

I won't post our big reveal pictures yet because there's a lot left to do and frankly who knows where the camera is in all this chaos, but I promise someday soon.

Right before we moved into our new house, we stayed up late watching "Money Pit" with Tom Hanks and Shelley Long. I have to admit that I pretty much expected this house endeavor to go a lot like the movie. So much so, in fact, that every time Robbie mutters something under his breath or sighs while working on a project, I yell across the room, "WHAT'S WRONG?" For some reason he finds this unnerving.

In my defense, we have had some minor snafus and challenges along the way. (Staple on the bottom of the couch + newly finished hardwood floors = me in a crumpled, sobbing heap) But for the most part we are getting by just fine, if at an incredibly slow pace due to other demands. Someday we will have a lovely home and all this mess and headache will be behind us. In the meantime, I'll keep bragging about my handy husband and hope the people in Home Depot don't ban me from the store for constantly breastfeeding in the tile aisle. (By the way, if you can solve the "should backsplash tile match your floor tile?" debate, I and the entire staff of Home Depot would be eternally grateful.)

Tuesday, January 13, 2009


I got two pieces of amazing news yesterday. Considering that I spent New Year's Day watching a Brady Bunch marathon while sick with the second round of stomach flu in two weeks, I figured no good news was coming my way anytime soon! (Incidentally, it was a Jan Brady marathon. Maybe it was the nausea talking, but after 4 or 5 episodes, I realized she was one twisted little girl.)

The first and most important news is that my mom is coming to town at the end of this month to help with the boys and house while Robbie's on a business trip. There have been many, many times this past month that I've curled into the fetal position and said "I want my mommy" - and now I get my wish!!

The second bit of news is that after several months of our vision therapist being MIA, a new therapist called to say she was taking over and we could start services for both boys again. I hadn't bothered to track the old one down because (as my Southern friends would say) she's a very sweet woman, but bless her heart she can't teach worth a damn.

For instance, I had asked her long ago about bringing in a light box to do some of the activities I've seen on other parents' blogs. She said she would look into it, but like everything that went onto her long "I'll look into it" list, I never heard about it again. This new therapist told me - unprompted - about all her goals and activities, including bringing a light box! Finally something is getting accomplished without me having to push and prod.

Talking to this woman reminded me of the time two years ago when our first therapist came to interview me and set up services for Emerson. We were sitting in his nursery and she was rattling off questions while I rocked my sleeping baby in the glider. His white hair was glowing in the cold winter light coming in from the windows, so I tried to focus on that instead of the growing pit in my stomach.

Despite my efforts, the tears came, rolling off my chin and quietly landing in his glowing hair. So quietly in fact that the therapist didn't even notice until she was almost done with the interview. When she finally realized, she stammered out an apology and gave me a sympathetic if confused look. "Sorry, I'm just trying to get used to all this," I said. By the time she left, I was thoroughly embarrassed and overwhelmed and sick to my stomach.

But we've come a long way since then, baby. A long way.

Sunday, January 11, 2009

What I want for Mother's Day

Although the description in the comments section sounds like an even more realistic version!

Super Mom Action Figure

Tips for Two

I went on an internet hunt for tips on transitioning to two kids and found very little to help. I figured I'd share the few I did find and/or came up with. But I'm putting out a plea for more. If you have any, please email me and I'll post it, or you can leave it in the comments sections.

As you can tell by the first few, I don't have much...and you're talking to a desperate woman.

1. Buy a Becco sling. The sling hasn't been the savior I hoped for, but it is still necessary. This has been the most versatile and comfortable of the 5 plus slings we own.

2. Never travel empty-handed: every time you leave a room, take a handful of items that need to be put away in other rooms (assuming your hands aren't already full of babies). You can even carry around a laundry basket to put things in and redistribute them to their proper place - just try not to waste any movement.

3. Set aside special toys for the older child to play with only when you need to nurse the baby.

4. For breakfast, give them a snack cup full of dry, healthy cereal. The time it takes them to feed themselves will buy you at least half an hour.

5. Buy a brest-friend pillow - it attaches to your waist and creates a sturdy shelf while nursing.

6. Hire a nanny. (Although if you can afford to do this, you don't need any of these tips)

Thursday, January 8, 2009

For Grammy and Grampy

Apparently both my sister and dad's workplaces are slashing jobs and they don't know what the future will bring for them. Perhaps if they are downsized we can all move in together and get a cheap family compound out in the countryside of Michigan. Or we could get our own mansion in downtown Detroit for $80,000. Man the economy sucks.

Anyway, here are some pics to cheer them up:


Yes, his hair is permanently like that

Apparently the cereal had blueberries...lots of them

He looks thrilled about his new outfit

Playground Dramas

Sometimes albinism comes at you when you least expect it. I had been feeling very positive for the past few months since Emerson started walking and increasing his sign language. In fact, I had pretty much forgotten he had albinism - except for the occasional person who gives us long, dumb stares as we wrangle two kids with white hair in public. Even little Fionn is doing much better with focusing and smiling than we ever expected.

Then a few weeks ago we took the boys to the mall as a cure for cabin fever (mine and Emerson's). Emerson loves to climb up and down all the steps and play with the interactive video game that they project onto the floor to suck little kids (and their parents bearing wallets) into spending hours in the mall. After we had sufficiently worn him out, we were trying to make our way to the exit when Fionn announced that he needed to be fed - now. So we took Emerson to the children's playground area - an area I have dubbed "excellent birth control" - and took our seats on the bench covered in dubious stains while he joined the swarming children.

He jumped in with enthusiasm, but then was quickly knocked down to the ground by another 2-year-old. That boy's mother screamed at him from across the room to be more careful, so as he towered over a stunned Emerson, he began to pat his white hair. Emerson sat there, being petted like a dog, with his lower lip trembling in apprehension. Eventually he got to his feet and attempted to escape this strange situation- only to be immediately plowed into by another larger kid. Now the tears came full force and he looked around for us to rescue him. It was heartbreaking because I knew he had been knocked down because all the movement made it difficult for him to focus. And to make matters worse, we were only a few feet away, but he couldn't tell which parents were his.

I was nursing Fionn, so Robbie ran out to get him and place him in an area where no kids were playing. This helped with the getting knocked down situation, but then he just looked so sad standing there all by himself. He must have thought so too because pretty soon he went looking for us again and again struggled to find us. As he broke into a second round of tears, Robbie swooped in once again.

There's nothing like these moments to slap you in the face and say "Hey, don't forget your kid is visually impaired." ugh.

On the bright side, Emerson has been keeping us laughing with some unusual new tricks. Like putting crackers in his toes and then using his toes to hurl the crackers to the dog. Or sneaking up to tickle me when I least expect it. Such a strange, funny little man.

Tuesday, January 6, 2009

In the Mood

Today I am in a youtube music mood, so I thought I'd share some of my favorites.

I share not because I'm one of those ultra-hip people who know how to find the hot music before it becomes hot - in fact I found a lot of these through commercials and other, much hipper bloggers - but having good music in the background makes parenting a little easier. I can close my eyes and imagine that I'm listening to the soundtrack of the movie of my life and somehow all these days of changing diapers and folding laundry are just part of the montage that comes before the climatic moment when the heroine's dreams all come true.


If you have any songs from your parenting soundtrack that you want to share, please leave them in the comments section. I'm always on the hunt for more!