Step Two: Don't Wallow in Self-Pity

A couple of months ago, the boys and I were taking advantage of an unseasonably warm November day by hanging out in our neighborhood park. When we arrived, we found a group of preschoolers collecting the still-abundant leaves into piles and then shrieking as they catapulted into them. I was suddenly overwhelmed by Norman Rockwell-esque warm fuzzies watching them play and thinking about how lucky we are to live in a friendly neighborhood full of kids the same ages as our boys.

However, I was quickly brought back to reality when I realized that Emerson had no intentions of joining the crowd - instead heading toward the empty climbing structure with faithful Fionn following behind. I tried to remind myself that between his shyness, poor vision, and difficulty communicating, socializing was a lot of work for him. But those things would change with time...hopefully.

Later, we walked home with another family who live on our street. They have two boys as well – the dimpled, precocious, 5-year-old Henry and the exuberant, fearless, three-year-old Oliver. As usual, Henry tried fruitlessly to engage Emerson in conversation as he bumped along with Fionn in the wagon. He finally gave up just as we reached our street and refocused his attention on the yellow house we were passing.

“Do you know who lives there?” he asked me.

“Sure, there is Sam, who is close to your age, and Zach, who is close to Oliver’s age, and baby Layla.”

“Sam is my friend, we play a lot. Does Emerson ever play with Zach?”

“No, he hasn’t yet.”

“Why?”

I sighed a little as I thought of a way to explain to a 5-year-old what was already weighing heavily on my mind. My mind shot back to the definitions of Apraxia I had read recently.

“He has a hard time talking to people, so that makes him a little shy. But he will get better,” I finally answered.

His brow furrowed as he thought deeply about this. “Why does he have a hard time talking to people? Is there something wrong with his voice?”

I smiled. Sometimes Henry reminds me of the kind of plucky boys you find in British adventure stories and I just want to hug him for it.

“No, it’s just hard for his brain to form the words right now,” I explained as simply as I could.

By this point we had reached their front yard and stopped. Emerson sensed freedom and began a happy stream of jibber jabber as he climbed out of the wagon.

Henry watched him for a few seconds and then said sagely, “He’s saying that he wants to come play in our backyard with us. Come on Emerson, let’s go.”


If only the world were full of Henrys.

*********************************************************

This past week, I arrived at Emerson’s private speech therapy appointment early for the first time ever. As we crawled through the hospital parking garage looking for an open spot, I called back to him, “When we see Miss Anita, you should say ‘Hellooooo Anita!’”

Emerson giggled, and much to my surprise yelled out, “Hell-ooooo ‘Tita!!”

Instead of hurtling through the hospital halls with one child in a stroller and another bouncing wildly in the sling on my chest, we casually walked toward the waiting room. The entire way there (and it’s a bit of a hike let me tell you), Emerson called out “Hell-ooooo ‘Tita!!” or “Hell-oooo Mama!!” and we all dissolved into giddy laughter.

The appointment was one of the best ever. He went through most of his flashcards with patience and pronounced sounds I’d never heard him say before. When the therapist asked what his progress had been the previous week, I proudly listed his new words and his attempts at sentences.

I was riding a wave of happiness, so I thought I’d take it one step further and ask what her thoughts were on Apraxia. She had mentioned it as a possibility when he first started, but she wanted more time to make a diagnosis. With his exponential progress I felt silly for even asking, but I wanted to finally rule it out.

I knew the moment I saw her familiar sympathetic smile that my bubble was about to be burst.

“Yes, I definitely think he has Apraxia.”

Finding out about albinism was like getting the wind knocked out of me...it took a while to get my breath back and even longer to get my balance. But finding out about Apraxia was like...like...remember that laughably impossible scene in Indiana Jones and the Temple of Doom when the evil villain plunges his fist into a man’s bare chest and rips out his heart? Like that.

Apraxia, the therapist reminded me, means he will need speech therapy until he’s as caught up as he can be – likely around highschool. I knew from my research that Apraxia also means constant struggles with reading and the parts of math and science that involve language (i.e. story problems). And of course, it means difficulty socializing.

The therapist explained that she knew he had Apraxia partly because an average child would learn a new sound and then instantly generalize it to every new word, whereas he has to learn the sounds of each and every word anew. Suddenly, I imagined this vast ocean of language stretched out in front of me - and we were going to have to guide him through it drop by drop.

Perhaps one of the hardest realities that came crashing down was the fact that Apraxia often runs in families. Fionn seems to be on track so far, but it is too early to rule it out. And the possibility of trying for one more baby, well that is definitely out for good.

It’s not that I don’t love my children exactly as they are and wouldn’t want a million more of them (heck, with those numbers, we’d definitely get our own show on TLC). It’s just that I am already crushed with parental guilt over the horrible genetic hand I’ve dealt them. I feel like we’re on the game show “How many conditions can you give your children?!!”

Host: “It’s the final round and our contestants, Robbie and Cassi, have already taken albinism, sensory processing disorder and severe peanut allergies. For the win, what’s your next move?”

Contestants: “Um...um...we’ll take Apraxia for $500 Alex!!”

I went through the rest of the day in a depressed haze. When Robbie came home from work, I tried to choke it back while I listened to his day and we buzzed around the kitchen preparing dinner. But as soon as the opportunity came, the day’s event came pouring out, ending with me bursting into tears as I slammed the fridge door shut.

He pulled me into a hug and tried to refocus me on the positive. Then we went about our normal routine.

Later on that night, Robbie happily announced that an old friend was expecting her second baby. I turned my anger on him, practically spitting venom. “That’s wonderful, I’ll bet the second one will be a girl so she’ll have one of each and they’ll both be perfectly healthy and happy in every way!”

Was I being bitchy and irrational? Yes. Had I completely lost perspective only a month after returning from the NIH? Yes. Is my Pollyanna makeover going well? Obviously not.

Unlike me, my husband is infinitely patient and optimistic, even with these kinds of outbursts. Sometimes I wish he would throw himself to the ground and beat his fists and kick and scream, “You’re right! This sucks!” But I have to accept that he never will.

When the kids were asleep, we curled up on the couch together and I pressed hot, indulgent tears into his chest. The more I worried out loud, the more he reassured me that everything would be fine.

“He’ll adapt, he always does.”

He was right of course – Emerson is already an expert at adapting in order to get what he wants and needs. I knew then – and I’ve reminded myself daily since – that my guilt isn’t going to help him. So I’ll have to figure out how to adapt too. Eventually.

Models with Albinism

Step One: Admit You Have a Problem

There are these moments with Emerson:

One moment I feel Progress sprinting by - lean, agile, unstoppable. The next moment, Progress is face-planting into the pavement.

One day he's smiling and saying "Hellooo!" to strangers. The next day I ask him to say hi to his teacher and he screams, "NOOOO!" and attempts to slap me. One day his training pants are dry all day, the next day he won't come within five feet of his potty chair.


Yesterday was a perfect example. After arriving at preschool, I was clumsily unbuckling his car seat as usual, and as usual he was complaining. "Buddy, we need to go into school so you can have fun with your friends and learn new things," I pleaded. He stopped and smiled. "Yeah! 'chool!"

This was the first time I heard him say school, so my heart leapt. He was so pleased with his new skill, he repeated it all the way to class and I couldn't stop beaming.

Later that night, I was trying to simultaneously bounce Fionn on my hip, cook dinner and help Emerson paint at the table. I would paint various colors on his hand and then he would create bright handprints over and over again on the paper. When we entered his "purple phase," he surprised me by looking at his hand and saying softly, "Puple." Two new words in one day is huge compared to his rate of progress a year ago, so I couldn't be happier.

After I put him to bed, Robbie and I sat down to watch The Daily Show. Robbie's celebrity girlfriend, Maggie Gyllenhaal, was a guest and it didn't take long before she started telling stories about her three-year-old daughter. At one point, she was discussing how hard it was when they watched movies like "Snow White" together because her daughter had so many questions about the death and violence in it.

I grimaced, pained by the idea that a typical three-year-old could not only sit through an entire movie, but could formulate questions about the meaning of death. I know Emerson is advancing exponentially and I should be focusing on that, but every once in a while these reality checks knock the wind out of me.

I guess the first step toward my Pollyanna reincarnation, then, is remembering to keep my eyes on the path right in front of us and not how far we have to travel. I've told myself this about 100 times already, but maybe 101 will do the trick. I'm optimistic.

Tabula Rasa

Smooches with Aunt Dani


I'm not a big fan of New Year's Eve - the pressure I put on myself to have fun nearly always backfires. For instance, one year I convinced my parents and best friend that we HAD to do the New Year's Eve event sponsored by the downtown association. We had our choice of free special events taking place all across the city, so we braved the frigid temperatures and waited in line for our top choice. After waiting and waiting and waiting, we were told the event was full. We repeated this cycle several more times before retreating to dinner at the only open place in town - the Sizzler buffet.

Still determined to have fun (damnit), I dragged the group to the last remaining event that wasn't full: open mic poetry at a coffee shop. We bit our lips in an effort to keep from laughing as bad poet after bad poet took the microphone and regaled us with their equivalent of Phoebe's "Smelly Cat." On the car ride home, we vowed "never again."

This past year, I decided to make my own fun by hosting a party at our new house. Never mind that we had a long list of boxes to unpack and renovations to finish, as well as a colicky newborn. The party was OK, but by the next morning I had worn myself down into a sad stump of a human being. I spent the day battling a second round of stomach flu for the month and watching a Jan Brady marathon. A horrible, horrible combination.

Despite my bad luck with the holiday, I do love the idea of New Year's resolutions. I love the idea that once a year I get a blank slate - a chance to upgrade to a better version of myself. (This may also explain my guilty pleasure - watching makeover reality shows. Don't judge.)

My track record with actually keeping resolutions is pretty poor. In fact, the only resolution I can remember keeping was the year I resolved to join my church's young adult group. I had just ended a two+ year relationship and was ready for a new start with new friends. The very next Sunday I sat down at my first-ever young adult brunch. A woman across from me leaned over and said, "You should meet our friend, Robbie. He's an engineer, so make sure to tease him about it."

Two months later we were married....so at least I kept the most important resolution.

This year my biggest resolutions are to 1) Be more positive 2) Be more patient and 3) Create a regular yoga practice. Pretty typical stuff I suppose, but I know the hardest one will be remaining positive. Unfortunately, this resolution was severely tested before I even got out of the gate.

On New Year's Eve this year, we were preparing to fly home from visiting family in Utah. We were exhausted from a week of trying to wean Fionn from nursing, only to have our progress destroyed when he came down with a severe upper respiratory infection and ran a high fever for nearly 5 straight days. Needless to say, my resolve not to nurse him quickly dissolved. (And now that I've backtracked, he's on to my evil intentions and wants to nurse nonstop all day, just in case I try weaning again. You can imagine how this is going to affect round #2.)

Fionn was finally on the mend by New Year's Eve and Emerson and I had escaped with only minor colds, but collectively we were still sleep-deprived zombies. I was also on edge before we even walked into the airport because my experience flying to Utah had been disastrous.

I had to go to Utah a week earlier than Robbie, so that meant flying alone with two toddlers. When we arrived at the airport at the ungodly hour of 5am, I found one open kiosk for check-in and a line that ran the length of the airport. Despite several efforts to make it work, we were informed that I could either get on the plane or check in my luggage, but not both. So I left everything with Robbie and rushed the boys through security, without a stroller since it had been accidentally left at home. The security guard stopped and informed me that I needed to take Fionn out of the sling, so I complied despite the enormous effort it took to undo everything while simultaneously herding a 3-year-old who was livid about having his shoes removed. Then the guard and her co-worker started in on the "Oh what beautiful white hair they have! Where did they get that white hair?"

I have never wanted to punch someone so badly. I kept explaining that I needed to hurry or we would miss our plane, but the guard informed me that we had to wait for a male guard to come pat down my one-year-old son. Then she continued to question me about their hair. Clearly frantic, I gave them the pat answers about albinism and then reiterated that I needed to leave NOW. They continued on about their hair and eyes, completely oblivious to my pleas. Finally, the co-worker realized I was upset and said to her friend, "Oh, you don't need a male guard to pat down a baby. Go ahead and do it." So the guard patted Fionn on the back once and then ushered us through.

By now we had four minutes to make it to the gate, which was all the way across the terminal. I asked the women if they could get a ride for us, and she smiled. "We don't have carts in this part of the airport. What did you say the name of their condition was again? Albino-ism?"

This time I ignored her, scooped up two children, two carry-ons, two pairs of shoes and ran as fast as humanly possible. We arrived at the gate seconds before the doors closed. Then we proceeded to wait on the plane for 45 minutes while they loaded the luggage - except mine of course. When the flight attendant lectured me for not telling him about the boys' peanut allergy soon enough (apparently telling them during reservation and check-in was not enough) and then he angrily announced to the rows around me: "You can't have peanuts as an option because these people have peanut allergies," I was teetering on the edge. One more event and I would've gone to a dark place - a place from which there is no return.

Anyway, this is all to say that I was less than patient on the ride home. When Robbie informed me that he had accidentally left his car keys (our only set) in his coat pocket and then put his coat in the checked baggage, I resisted the urge to freak out. True, I had warned him to empty his pockets first and he had ignored me, but what were the chances of that one bag being lost? Stay positive, stay positive.

When we finally pulled up to baggage claim that night, I breathed a sigh of relief as first one, then two of our bags came into view. Then the bags stopped coming. Our third bag, the one with the car keys, was no where to be seen. I thought to myself, "It's only New Year's Eve, so technically I don't need to be positive until tomorrow." Then I went ape sh** on my husband. A $60 cab ride later, we were home and I had settled down enough to ring in the New Year with my sheepish husband and two now-wired children (they slept for part of the plane ride).

The next day, I felt the sense of renewal I had hoped for. This was it - I was a positive woman from here on out. Look out world - there's a new Pollyanna in town!

Robbie had a plan to drop our spare car keys off at the airport so our friends flying in that day could drive it home for us. The luggage reappeared and was delivered to our house at the promised hour. Things were slowly getting back on track. Then I began to unpack the wayward bag, full of clothes my mother had generously washed for us. I felt nauseous and light-headed within a few minutes. A horribly familiar smell emanated from every article. Then I unrolled a pair of pants covered in wet stains - gasoline. Somehow they had poured gasoline all over a corner of our bag and then delivered the noxious-smelling package to our house without a second thought. "Really?" I hissed at the universe. "You couldn't even give me one day to gird myself?"

Luckily only one pair of pants was ruined, but everything had to be rewashed and the duffle bag thrown away. We called the airport and they informed us that if we wanted compensation, we'd have to drive the 40 minutes back to their office and prove it.

So we did, leaving a few of the worst smelling clothes inside as evidence. The man at the front desk nearly fell off his chair when Robbie handed him the bag, the smell was that bad. He wrote down a list of clothing in the bag, threw it all away, and then told us to rebuy everything on the list. We would have to submit receipts for the new items and within a month, a compensation check would be issued.

We kicked ourselves for not leaving all the clothes in the bag - or at least the crappy ones. But the next day, we started our shopping by going straight to J. Crew and buying two shirts for $100. Probably not a good way to rebuild my karma, but I was already feeling more positive.

So here's to a New Year, to taking baby steps toward a better me. I may not be Pollyanna yet, but there is still time and hope. And if all else fails, good drugs.