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.

Travel Log Part Four - The Final Stretch

Playing at the Smithsonian Museum

(In the spirit of Christmas, let's pretend this post is not several weeks late!)

So the final day of the study had a fairly light schedule, which was a relief for the whole family. We originally had ambitions of taking the metro into DC every night to see the sights, but we quickly realized we needed to rest up at night as much as possible. Despite our efforts, I was feeling exhausted, sensed sickness coming on, and was in a generally fragile state of mind come Wednesday morning.

The first appointment was with the Occupational Therapist in a playroom similar to the rooms at preschool. The boys were thrilled at the chance to sit and play instead of being poked, so they immediately went bonkers. I was surprised that while the OT and her assistant asked the typical developmental questions and observed the boys doing a few key activities, their focus was actually on vision. Apparently she has a lot of experience with adults with albinism and helping them adapt, so she had a wealth of suggestions. She gave tips on everything from slanted boards to help with writing and coloring, to techniques for getting colored tints in his prescription glasses to help with glare and fluorescent lights. In short, it was a great experience.

We were riding on this high when Dr. Adams came in to inform us that some of the results from Fionn's blood test came back abnormal. Since our second and final appointment for the day was a wrap-up session with him in the afternoon, he asked us to get Fionn's blood drawn again right away so that he could have the results in time for our meeting. Apparently, the elevated level could indicate a problem with the liver, so he wanted to confirm the results before taking any further action.

As we walked down to the phlebotomy office once again, I felt myself coming apart at the seams. If it had been any other organ I might have kept cool, but Fionn had an unexplained spot on his liver during my pregnancy ultrasounds, so my thoughts immediately went to dark places. When the man at phlebotomy looked up from his desk and saw us standing there, his face looked equally dark. "Weren't you guys in here yesterday? They're making these poor kids do more blood tests?"

His empathy and care as Fionn had to get his blood drawn again - now on the same arm as his biopsy - was touching. It also made me want to fall apart even more. We spent another lunch in the basement cafeteria and I silently cried through the whole meal. I knew I was overreacting, but sometimes all I can do in moments like that is sit back and watch myself dissolve.

Luckily, both boys fell asleep just in time for the meeting, so at least our appointment was nice and quiet for once. Dr. Adams showed us that the test results had come back elevated once again, but since other results came back normal, he was at least able to rule out liver problems. Whew!

He explained that when you do this much detailed testing, you're bound to find something abnormal, so most likely it was nothing. He gave us some information sheets on a condition where these particular levels are consistently elevated in young children, but they were vague at best about what the condition meant. There doesn't seem to be any symptoms, but it is correlated with other conditions. Basically he sent the results to our pediatrician with the suggestion that we test every six months to determine exactly what's going on.

The rest of the appointment was spent answering whatever questions we had for him about the study and albinism in general. Out of curiosity, I asked what was the largest number of siblings with albinism he had seen in a single family and he answered "Three." We're not planning on having anymore, but every once in a while I ache for a daughter and wonder what the odds of having three kids with albinism are (I mean I know statistically, but statistics aren't always realistic). After the appointment, Robbie shot me a look, "Did you ask him that because you plan on breaking the record?"

I assured him that I could never handle four children, much less the bill for sunscreen, but it is an interesting academic exercise to ponder. There are some geneticists who claim that despite the typical 1 in 4 odds for exhibiting a recessive genetic condition if both parents are carriers, there are some instances when all the children are born with it. This has led them to wonder if something in the reproductive process is selecting for that condition. That's my shoddy attempt to explain the scientific reasoning, but hopefully it makes some sense.

With the study now officially done, we headed back to the Inn for a dinner sponsored by a local hotel. I should explain that earlier in the week, we had met an adorable 13-year-old girl who was staying at the Inn with us. She was bubbly and funny and talked so much I wanted to collapse with exhaustion. But I adored her. We talked about boys and school and life as a teenage girl - all the things I couldn't wait to talk about with my own daughter someday. After a couple of nights, she also revealed that she had a huge crush on my husband - or "Mr. Robbie" as she called him.

One night on her way to bed, she asked me if she could give me a hug goodnight so she had an excuse to give Robbie a hug too. Of course I agreed and had to stifle a giggle as she gave him a quick hug. On her way out, she ran over to whisper in my ear, "It was SO good...my knees are shaking!"


Playing at the Children's Inn

That is why I was not surprised when we returned from dinner at the hotel Wednesday night to find her - and several of her friends - waiting at the top of the stairs for us. Apparently word had spread about her crush and they were waiting none-too-patiently for Robbie's return.

Unfortunately, I wasn't feeling well enough to be in the playroom all night, so I left her without a talking companion. When we packed up and left the next morning, I wrote her a note to say my goodbye and coached Robbie as he wrote his own note. I knew it had to strike the right chord so she would have something to swoon over without making him sound creepy. We settled on a post script that read something like: By the way, you're a cute girl who will get a lot of boys, so make sure you choose carefully! I got an email from her a few days later and apparently the note was a huge success.

Can't say I blame her - my Mr. Robbie is quite the heartthrob.


Robbie in front of the Smithsonian

Travel Log Part Three - Tough Tuesday

Playing at the Children's Inn

Monday ended with a biopsy and Tuesday began with a blood draw for the whole family. I was starting to think they should have scheduled these things for the very end so the kids wouldn't be too traumatized to even walk into a doctor's office, but I'm sure they have a method to the madness. This added yet another screaming session from restraining them and yet another bandage for Emerson to point to and say in the world's most pathetic voice, "Boo boo!" Dr. Adams had mentioned they would apply a topical numbing cream and he put the orders in, but somehow it got lost and was never done. I do have to say, however, that the staff of Phlembotomy took extra care to get the kids in first and make sure it would be as fast and painless as possible.

When we talked to Dr. Adams on Monday, he mentioned that the opthalmology appointment scheduled for Tuesday was always the roughest part for families. I knew it would be long and frustrating, but we've done many 4-5 hour long opthalmology appointments in the past three years, so I didn't think anything of it. I should have listened.

The appointment started with the usual goofy voices, barking puppets and bouncing teddy bears to get the boys to hold still while the doctors looked at their eyes through thick lenses or tested distance vision. Despite the fact that Emerson was reliably matching the black and white pictures opthalmologists use during our time with his vision teacher, of course he refused to cooperate at the appointment.

They did use the Teller Acuity cards to get an estimate on both boys, which was around 20/400 for both. It's actually better than I predicted for Emerson, so that's a start. They said Fionn's vision is at the very, very bottom of what's considered normal for his age range while Emerson is well below the normal range for his age. So in that sense our predictions were right: they both have impaired vision, but Emerson's is worse.

On the down side, both have developed an astigmatism, so we need to better about making Emerson wear his eye glasses and Fionn needs to get a pair as well. Keeping glasses on that wild child is going to be a pain in the a** to say the least. But I guess I should have seen it coming (no pun intended).

During the day, we also learned that two of the doctors, including the main opthalmologist, Dr. Brooks, trained with our local doctor, Monty DelMonty (I'm purposely spelling it wrong in the hopes that he won't decide to google his name one day and discover this post). We are certainly lucky to have such a great doctor in our area and this conversation confirmed that. But I do wish he would work on his bedside manner a bit more. The initial diagnosis appointment for Emerson was a little rough on us and even at our last appointment, Dr. DelMonty was shaking his head over the fact that we hyphenated our kids' last names.

"What are these poor kids going to do when they get older and get married? Hyphenate it again?" I couldn't believe a man named Monty DelMonty was seriously criticizing my naming choices, but I digress. :)

Dr. Brooks was hands down a great doctor and wonderful to talk to. At the wrap up appointment near the end of the day, he was working with a nearly comatose Emerson, so I was doubtful that we could accomplish anything. However, he managed to get him to hold still and even smile by singing the entire "Elmo's World" theme song over and over again in his best Elmo voice (and with no shame despite a door open to the waiting room.)

The rough part came in the middle of the day when they dilated the boys' eyes and then sent us down for photos. You can imagine that if you are already light sensitive, having your eyes dilated and then having your head put in some machine that shines a light at you would be pretty bad. Then add to that being an antsy, hungry, tired three-year-old who must hold still while they meticulously focus the cameras and shoot flashes at your face, and you can see where this all went south very quickly. By the end of his session, all of us were sweating and Emerson was nearly hoarse from the protesting.

We learned from other parents doing ophthalmology appointments that day that the photographs weren't nearly as bad for them, but I don't know if that's because their children aren't photosensitive or because my child is just a lot less compliant. Fionn did ok, but he had taken a nap and had to be woken up well before he was ready in order to take the pictures. I expected screaming to ensue, but our biggest issue with him was getting his tired, wobbly head to stay up and his drooping eyelids open.

By the end of the day, we were all beyond exhausted. We dragged our sorry butts back over to the Inn and - by some miracle - managed to get ALL four of us down for a three-hour nap. We woke up and went straight to the community dinner, which gave us a chance to relax and talk to other families.

The information we've gathered during this trip has been extremely interesting and helpful, but the best part has definitely been all the people we've met. (I know, I sound as gushy as someone who just got back from highschool band camp or a corporate retreat to build camaraderie, but bear with me.)

While we were at the ophthalmologist, we heard from the nurses that there was another family whose four-month-old son was recently diagnosed with albinism in the room next to ours. We managed to track them down just before they left, so we talked over lunch. Their little boy was scrumptious and it felt great to talk to someone else who can relate to our concerns and questions!

We've also met so many great families at the Inn, especially during our many hours in the main playroom. At first I wasn't sure what the etiquette would be - I mean, I certainly didn't want to walk around saying, "So, what are you in for?" I figured many families wouldn't want to talk about it, but I soon discovered I was wrong. Most conversations went very quickly to that subject, but I have to say I found talking about the boy's issues with these families therapeutic rather than annoying. Even though the issues vary widely and run the whole gamut from minor to life-threatening, I think we all shared a common thread. We had our world turned upside down, even if only for a short time. We've felt vulnerable, helpless, and frustrated. And we've all fallen head over heels in love with these tiny people we never expected to be in our lives.

We've met children with Joubert's syndrome, digestive issues, a brain tumor, fluctuating hearing loss, vision problems, etc. In only a few short days we were wishing each other good luck as we headed out for the morning, waving at each other in the halls of the hospital, comparing notes on appointments, and sitting down to dinner together at night. I looked on this trip as a chance to help science while getting some sight-seeing in, but I don't even care that we've only been downtown once. It's a strange little microcosm of the world, but I'm certainly going to miss it when we leave Thursday night.