Making a Scene

This morning we were making our usual frantic attempt to get to Early Intervention on time when Fionn threw the proverbial wrench into the works. First he managed to dump an entire cup of cold water (pilfered from Emerson) into his lap, then he filled his diaper with a noxious concoction. I had just finished getting Emerson ready to walk out the door, so I moaned with the realization that we were once again going to make the walk of shame into school 15 minutes late. As I started to change Fionn's diaper, Emerson decided he wasn't about to let this slow him down. He managed to open the front door and proudly marched down the front steps with the dog close at his heels.

When I saw what was happening, I ran out screaming after him, a naked baby covered in poop dangling from one arm. I managed to get Emerson's arm and drag him back inside, but I saw the back of the dog disappearing around the corner and decided it wasn't worth chasing after her. As I suspected, she was waiting at the front door with her tail between her legs when we reemerged 10 minutes later.

At dinner tonight, Robbie and I started discussing how unfriendly the neighbors across the street are. Most of the neighbors have introduced themselves since we moved in, but these particular neighbors never even make eye contact. As we talked, I thought about the scene we created this morning and realized that may be part of why the neighbors are shunning us. In fact, we tend to make a lot of embarrassing scenes.

For example, I'm sure they often see me sitting in my car in the driveway for hours, reading a book or writing papers - not realizing that I have a perfectly rational explanation for this. Namely, the boys have fallen asleep in their carseats and I'm so grateful for quiet time that I'm not willing to risk moving them.

Or there was the time when Emerson was obsessed with the car, so every day for several days, Emerson would be sitting in the front seat of our car, turning the hazards on and off, honking the horn, etc. while I stood next to him reading theology books and wearing Fionn in the sling.

Or there is the daily scene of Emerson tromping up and down the sidewalk wearing a mismatched outfit, bright red galoshes, sunglasses and a floppy hat - pushing his favorite hot pink doll stroller with a baby doll precariously strapped inside. Meanwhile, I sit on the steps indiscreetly nursing a baby and yelling at the dog who manages to escape from the backyard every five minutes.

I would probably shun us too - we may be single-handedly bringing down the house values in the neighborhood. But you can't put a value on entertainment.

Travel Adventures - And Why Thomas the Train is Super Freaky

I love traveling...partly because I don't have to cook or clean up after myself or face bills or meetings or homework for a given amount of time. And partly because...I don't know how else to describe it except through the senses. I love the way all the noises are heightened when you pack a car full of luggage in the pre-dawn hours, I love the smell of hotel rooms (probably a combination of an ancient air conditioner running and bodily odors from the thousands of people who stayed before me, but whatever), I love the satisfaction of eating a big meal in a strange restaurant after walking all day...I could go on and on.

As I mentioned before, we traveled as a family to Chicago a couple of weeks ago for our first-ever albinism conference. We went by train, which is my favorite way to travel. There's something romantic about train travel - it reminds me of the old movies where the doe-eyed heroine stands on the station platform waving goodbye to her soldier one last time before being enveloped in a cloud of white steam and smoke.

The reality is that you stand in a dingy glass box until the train pulls up, then you heave your luggage on board and try to find a seat with the maximum amount of leg room and minimum amount of stains. I travel to Chicago on the train a lot for school and despite the bare minimum of luxury, I wish I could take the train everywhere.

This particular trip was exciting because neither of the boys had ever been on a train. Fionn was more impressed with the scenery whirring by then Emerson, but Emerson still found plenty of ways to entertain himself. Unfortunately, every way involved making us walk up and down the length of the train. For nearly four hours straight.

Pretty soon he developed a routine where he would jump at every passenger as he passed them, giving out a mild screech in an attempt to "scare them." Luckily the train was loud enough that it wasn't obnoxious, but I could still tell when he and Robbie were coming toward me by the succession of "ahhh"s that got closer and closer. Half the people smiled sweetly or waved - the other half were obliviously listening to iPods or crunched against the window sleeping. Emerson didn't seem to care - or else couldn't see their facial expressions - he was having a blast. In fact, he spent a few minutes jumping up on his seat to play peek-a-boo with the man behind him, then falling over with laughter. He never noticed that the man was asleep through all this. I guess sometimes low vision has its benefits!

After a long day of traveling, we collapsed into our beds and got a few hours of sleep before getting up and repacking everything again. I immediately wished we had stayed an extra night so I could have some recovery time, but such is life.

The conference had fairly good attendance for only being a "mini regional" conference and had some useful information. For example, we learned about a new study on albinism going on at the NIH in Washington, D.C., so we're definitely going to get the boys involved in that. Not only do we get a trip to one of the greatest cities on earth, we also get to help researchers better understand a rarely-studied condition.

The other exciting part of the conference was meeting fellow parents. One woman had a little girl only a couple of months older than Fionn and the two of them hit it off (you know, as much as two infants can). They were fascinated with each other, which was adorable to see. Unfortunately there weren't any children with albinism Emerson's age, but he made many "pigmento" friends.


(Annie and Fionn in the lunch line. Yes - I always keep a cheesy grin on my face.)

At one point, the parents broke into their own group for discussion time. Most of it was spent on IEPs in school, which I'm not dealing with yet and therefore try not to think about too much. But during this discussion, one veteran mom began to talk about the importance of taking care of ourselves so that we can better deal with the issues that come up around albinism. As she listed all the things we as parents have to deal with - stares, comments, school issues, adaptive tools, etc. - I found myself choking back tears. It hit me that for once in two and half years, I was surrounded by people who knew exactly what I was dealing with. Of course many parents talk over email and webboards, but having a conversation with someone in person is so much more meaningful.

It was also wonderful to interact with people and not have to launch into an explanation about albinism. Someone would "cootchie-coo" one of the boys and we'd wait for the inevitable questions...then realize that in this crowd, we didn't have to say anything.

Ah, bliss.

I only wish it was longer, but at least it gave me the motivation to go to the national conference in D.C. next year. We should have gone to the one last year in Las Vegas, but I didn't think it would be helpful with Emerson being so young. Plus, who in the hell plans a conference for people who are extremely sensitive to the sun in Las Vegas...in July?!

As a side note to our train adventure, Emerson has decided that his love of train travel does not extend to Thomas the Train. He has recently become interested in television (oi vay - another topic for another time), and one morning PBS aired an episode of Thomas the Train. As soon as the trains started talking, Emerson screamed bloody murder and threw himself into my arms. I immediately turned it off and he was fine again, but I wondered if it was just a fluke. Then, yesterday, a commercial came on for Thomas and within seconds he was screaming again. I guess I can't blame him. A train with giant eyes lolling around its head and a claymation mouth freaks me out too. I'm not sure if he's still on, but when I was kid, Ringo Starr played the host/conductor, which only added to the "high on acid" effect.

I think we'll just stick with the real thing for now.

Potty Mouth

A few weeks ago, Emerson started doing some Hammer-esque crotch grabbing to indicate that his diaper was wet, so I taught him the "diaper change" sign. He has been using it pretty regularly since then, which meant it was time to introduce him to his own potty.

I have been dreading potty training since before Emerson was even conceived. And considering how slowly and painfully he has achieved other milestones, I have no illusions that this will go any better. But to my surprise, at least the initial introduction went better than expected.

We spent the majority of that first day playing with it - all three of us crammed into our tiny bathroom we dubbed "the head" since it gives one the distinct impression of being in a submarine. Without any prompting, he immediately sat down on his throne and let out a satisfied sigh. I cringed at how realistic this reenaction was and thought about offering him a magazine to read. But it did not stop there....

Emerson had to sit on the little potty....I had to sit on the big potty...Emerson had to sit on the big potty...we both had to sit on our respective potties and look at each other...the baby had to sit on the little potty....Emerson had to sit on the little potty while holding the baby....etc., etc.

I made an effort to let him watch me anytime I actually had to use the bathroom that day - emphasizing each part of the routine and letting him flush it down. This ended up being a mistake because over and over again he would drag me to the toilet, jab his finger at me like a little dictator and demand, "Go, go, GO!!!" Maybe in my pregnancy days I could've followed his command on the spot, but now not so much.

Since that day, the potty's magic has faded and now he only occassionally sits on it. I'm not entirely sure he understands the point of it considering 1) he insists on being fully clothed while sitting on it and 2) yesterday he pulled it up to the big toilet like he was pulling a chair up to a table. Then he began to scoop imaginary food off the toilet lid and pop it into his mouth, savoring each bite with smacking lips. I'm pretty sure OSHA would not approve of that.

I'm not going to push this experiment further for now, but I know that day of following him around like he's an untrained puppy, anxiously asking "Do you have to go potty?" is coming eventually. In the meantime, at least our bathroom fun has motivated me to keep the toilet so clean you could eat off it.

The Father of Invention

A couple of weeks ago I was telling my friend that I wish Robbie and I could switch places because he would love to be a stay at home dad (he thinks anyway) and I don't mind working. Unfortunately, even once I become an ordained minister, I'll never match his engineering salary.

She suggested that we should try to cash in on one of Robbie's many "million-dollar" ideas and then we could do whatever we wanted. I mentioned this to Robbie on the drive home, so we started brainstorming ideas. This naturally led to a conversation about the infomercials that peddle their products by warning about the extreme dangers of pulling an arm muscle by trying to lift a pot of hard-boiled eggs off the stove (The EggGenie - with BONUS Baconwave!) or wrenching your neck while wrapping your hair with a regular towel (The TurbieTwist).

Suddenly, it dawned on me what the world needed next.

"Women are always complaining about cankles, you should figure out something to fix those!"





Robbie shrugged, "That's easy. Just give them oversized shoes."



Pure genius....and he's all mine.

Conference Fun (not an oxymoron in this case)

We met a lot of wonderful people at the conference this past weekend, including a woman named Heather who played some serious peek-a-boo with Emerson. She posted some great photos of the boys and of the other conference participants on her blog:


Heather Kirkwood

A Terrible, Horrible, No Good, Very Bad Week

I know I said in the last post that I didn't want to bitch.

I lied.

So last week Robbie went on a last-minute business trip (the first of two this month I might add) and left me alone with both kids for the first time. The idea of being alone with both of them for an entire week has terrified me so much that I actually had my mom fly out from Utah for the last business trip. Yes, I am a wimp.

But to give you an idea of why I was so terrified, the last time I was alone with Emerson for a week and pregnant with Fionn, Emerson decided one night that he was not going to sleep. Ever. After several hours of begging, threatening, soothing and even walking away, he threw a tantrum the likes of which I had never seen. It ended with him purposely projectile vomiting his entire dinner all over his clothing, crib and floor.

This time, I made it through Monday without a major hitch because Robbie's aunt and uncle graciously agreed to watch the boys for four hours while I was in class - giving me enough time to recharge. Tuesday also went well and I was feeling pretty darn smug when Robbie called at 10pm and I could report that both boys were fed, bathed, books read, teeth brushed and fast asleep. But just as I fell asleep that night, I thought, "Don't get too confident this early - that's like thinking you can run a marathon because you made it to the end of your street without passing out."

The next morning, Emerson proved this to be wise advice. An unfortunate event involving his new-found ability to unbuckle his booster seat belt buckle and a pair of footie pajamas ended with him slipping out of his seat and hitting the floor - but not before smacking his giant noggin on our wood table. Looking back, I am still amazed at how quickly an egg-sized black lump appeared on his forehead.

Me, being the cool cucumber I am, scooped him up and preceded to run around the house gasping "oh my god, oh my god" while simultaneously scrolling through my cell phone trying to figure out who to call first, wondering if it would be callous to change out of my pajamas before taking him to the emergency room, and trying to soothe two crying children. I quickly decided to call the pediatrician and then as the nurse came onto the phone and I started to explain the story, I looked down and realized his nose was bleeding on my shirt. I discovered later that he bumped the end of his nose on the table too, but at the time I thought he had hit his head so hard that he was internally bleeding. I immediately felt ridiculous for not calling an ambulance and tried to get off of the phone with the nurse, but she managed to tell me over the crying and commotion that I didn't need to take him anywhere.

She calmly explained that the bruising was a good sign because it meant he wasn't swelling or bleeding internally. I had a hard time believing this, but I followed her instructions to give him some Tylenol and a cold pack and let him rest. I was also supposed to keep an eye out for any unusual behaviors in the next 24 hours. (When I recounted the story to Robbie later on, he burst out laughing at this part. "Unusual behavior - like standing in the corner or putting buckets on your head or doing strange dances? How would we know with Emerson?")

Sure enough, his nose stopped bleeding almost right away and he laid down and took his regular nap. The nurse assured me it was ok for him to sleep, but I left him on my lap and nursed Fionn to sleep so I could watch them both softly breathing. For the first time, I noticed the slim blue vein in Fionn's neck pulsing with every heartbeat as he slept. I sat there watching it for an hour, mesmerized and comforted by this reminder of their vitality.

When all was said and done, Emerson had a giant bruise that shone like a black and blue beacon on the center of his pale forehead. This meant that I got to relive the story over and over every time we went out in public and people pulled out their cellphones - ready to dial CPS.

The rest of the week didn't fare any better - including an incident where I accidentally threw away my license and debit card and didn't realize it until days later when I went to pay for an entire grocery cart full of food (sorry Randazzo's produce market), Robbie forgot to do anything for Mother's Day, and a strange woman decided to offer me unwarranted and unsolicited parenting advice, so of course we ran into her again at the park....just as Emerson and Fionn both erupted into major temper tantrums over the swings.

I recount these events for four reasons 1) to offer birth control for my friends who don't have children 2) to offer reassurance that kids are resilient for my friends who do have children 3) to express my undying respect for single parents everywhere, and 4) to give my children proof that I was a horrible mother when they go into therapy someday.

The bright spot in the past couple of weeks was a two-day trip to Chicago for our first-ever albinism conference! But that's another post for another day...hopefully a better day.

Happy Mothers Day!

My day is going....poorly. To say the least. But rather than bitch for several paragraphs, I thought I'd republish a tribute that I wrote for my mom last year:

A Tribute to My Mom

I hope all the preggos, mothers, grandmothers, godmothers, and mother-like friends have a wonderful day!

Ahh Spring

The first seedlings in our "Freedom Garden" - one week old



The view from our bedroom of our yard and the old orchard across the street:


The elderly couple that lived in our house before us were excellent gardeners who planted lots of blooming trees, bushes and bulbs, so I'll have to take more pictures when it hits its full glory



Of course, Spring is the season for rain storms and thus galoshes. But according to Emerson, galoshes are appropriate every day - rain or shine:

This Dedication Goes Out to My Chubby Baby

Fionn had a wonderful dedication ceremony yesterday at our church - it was a perfect day weather-wise and we were very grateful for the friends and family that made the drive to see it. Of course, seeing it would be more exciting than reading about it, so I planned on filming the whole occasion for those who couldn't make it. But in the rush to get the boys ready in time to pick up the cake for the reception and get to the church, we left the camera at home. (Insert image of me kicking myself - HARD).

Emerson's dedication ceremony was equally beautiful (we had just learned about his diagnosis, so when the minister blessed him with water and wished that his life may "take the easy way," my mother and I and Emerson's Guidemother all burst into tears that lasted the rest of the ceremony). But I was able to compile this ceremony and write parts of it myself, so that added something different.

Fionn was his fat and happy self the whole way through, only grimacing when the ceremonial water was dabbed onto his head. Emerson was less than enthusiastic, however, and squirmed, insisted on sitting down on the floor, tried to crawl away, demanded a drink, etc. until I finally put him back into the pew to sit with his cousin. I wish I had a photo of the look on his face when the Director of Education got to his portion of the ceremony and addressed him directly - through a microphone. He froze in place and his eyes got so wide I swear if his hair wasn't already white it would've turned white then!

For those who are interested, I will copy the ceremony below. Thank you again to everyone who made it such a perfect day!

Fionn’s Ceremony


Introduction: In presenting your child in this service of religion that he may be named and recognized by this church family, you are thereby taking a step as parents in the assumption of moral responsibility. Let your child learn from your lips and your life how lovely is the path of virtue, how noble it is to become an apostle of truth, how holy it is to sacrifice oneself, if need be, for the good of others.

The great end of parental care, as William Ellery Channing observed, “is not to stamp your minds upon the young but to stir up their own; not to make them see with your eyes but to look inquiringly and steadily with their own; not to form an outward regularity but to touch inward springs; not to burden memory but to quicken the power of thought, so that they may learn and approve for themselves what is everlastingly right and good.” (Lon Ray Call)

Presentation of the Name:

Today we dedicate Kepler Fionn. Fionn is a Gaelic word meaning “white” or “bright.” It’s also the name of the famous warrior in Irish mythology, Fionn Macool, whose hair turned prematurely white as a child. Just as the mythological hero was brave in defending his homeland, Fionn’s parents wish him courage and strength as he faces the challenges ahead.

By recognizing Fionn’s name publicly, we declare that he is an individual – a unique and separate person with a dignity and life of his own. We will respect his individuality and in turn teach him to respect the interdependent web of life.

Presentation of Flower: Robbie and Cassi, you come with Fionn out of reverence for the mystery of life that you have seen in the birth of your child. In this dedication ceremony we give Fionn a flower. The flower symbolizes the beauty of Fionn’s young life. The flower also symbolizes the meaning of this dedication, for whether a flower is beautiful or not, whether it comes into full bloom or not, whether it fulfills itself or not depends on the nurture it receives. No flower grows alone, apart from the sun and rain and soil in which it grows. So too, no child grows alone.

Presentation of Water: In this dedication ceremony we bless you, Fionn, with water. Water symbolizes the meaning of your life to come. As water seeks the path of least resistance, may your life too, be filled with the easy way. May you rest in low, shaded valleys, and may you rush energetically through the many channels of life's experiences that await you. Like this water, may you be source of life giving energy to all whose lives you touch.

To The Parents: Robbie and Cassi, as parents of this child do you solemnly promise, that to the best of your abilities, you will instruct and train Fionn in the principles of right living?

Parents Respond: We do.


Do you promise that you will help Fionn to be a fearless, impartial, and reverent seeker after truth, beauty, and goodness?

Parents Respond: We do.

Will you affirm that Fionn is a sacred responsibility, as well as the embodiment of your love for one another? Will you dedicate yourselves anew to that way of life which will fill Fionn’s heart with memories of gladness and a sense of compassion for all others who travel life's wondrous journey?

Parents Answer: We will

To the Sibling: Emerson, as Fionn’s older brother, you will be the role model he looks up to. Although you are too young to understand now, your bond with your brother will be everlasting - continuing long after your parents are gone. May you always be united by respect, love and compassion for one another.

To The Guideparents: Jacob and Dung (pronounced YOUM), in consenting to become Guideparents to Fionn, you carry on an ancient custom. Will you continue to bear in mind your promise to befriend and guide and help Fionn as the need should arise?

Guideparents Respond: We will.

Charge to the Congregation: The minds and hearts of infants are as open to the wonders and worries of the universe as a vulnerable flower in bloom. As the essence of religion is to shape the person into someone whose heart and mind is aware of both but seeks wonder foremost, will you, as a congregation, commit yourselves to imbue in Fionn the values that shape our free, liberal, religious tradition? If so, say, "We will."

Congregation Responds: We will.

Charge to the Young People: As young people who have attended this church, you understand Unitarian Universalist religious values. Will you now pledge to Fionn that you will be an example for him, helping him to be a good Unitarian Universalist, and that you will do what you can to assure he receives the same love and friendship from this church as you do? If so, say, "We will."

Young People Respond: We will.

Closing: We close this service of dedication with thoughts of a future centered around Fionn and coming from a past that encompasses our own childhood. Let us aspire to keep from our past all that was good so that Fionn may grow from that starting place. And let us work at making the present an abundant source of excellence from which Fionn may develop a life rich and magnificent for all to behold.

In the words of Kenneth Patton:

Nothing is strange to the child for whom everything is new.
Where all things are new nothing is novel.
The child does not yet know what belongs and what does not;
therefore for him all things belong.
The ear of the child is open to all music.
His eyes are open to all arts.
His mind is open to all tongues.
His being is open to all manners.
In the child’s country there are no foreigners.

(From This World, My Home by Kenneth Patton)

For Those Who Come After Us

Fionn's dedication ceremony is tomorrow and my minister asked me to arrange the ceremony, so I spent a portion of yesterday pouring over quotes and readings about children. I came across this reading, which summarizes perfectly how I've been feeling lately (although it's too dark to include in the ceremony):

"We pray for those who come after us, for our children, and the children of our friends, and for all the young lives that are marching up from the gates of birth, pure and eager, with the morning sunshine on their faces. We remember with a pang that these will live in the world we are making for them. We are wasting the resources of the earth in our headlong greed, and they will suffer want. We are building sunless houses and joyless cities for our profit, and they must dwell therein. We are making the burden heavy and the pace of work pitiless, and they will fall wan and sobbing by the wayside. We are poisoning the air of our land by our lies and our uncleanness, and they will breathe it.

"We have cried out in agony when the sins of our fathers have been visited upon us. Save us from maiming the innocent ones who come after us by the added cruelty of our sins. Help us to break the ancient force of evil by a steadfast will and to endow our children with finer ideals and nobler thoughts. Grant us to leave the earth fairer than we found it; to build upon it cities of hope in which the cry of needless pain shall cease. May we be granted a vision of the far-off years as they may be if redeemed by us that we may take heart and do battle for our children."

From For Those Who Come After Us by Walter Rauschenbusch