Buddy Walk/ Puddle Walk 2015!

Dear Jules,
This year, I'm actually on sabbatical, which means I don't have to "work" all year long! Actually, despite what many politicians say, that's not true. It just means I'm working on my book--about obsession in British Romantic literature--instead of teaching students. One thing that is true is that this sabbatical gives me more free time to write, so I'm joining this 31 for 21 challenge! I cannot believe how many Buddy Walks it has been since you were born. At our first one, your dad and I just sorta went: we didn't plan, we didn't have a team, we didn't have a tent, and we didn't know many people. We knew a few people from DSAL, and it was nice to see them, but I remember going home feeling, quite honestly, upset and excluded.  I had thought that just going and walking--like any walk we do for a charity--would be enough.

What this experience taught me was that this event isn't like a "normal" charity walk or even a charity run.  You don't just go, "do" the walk, and then leave.  Instead, it's a huge community event, brought together by lots of thoughtful people over many months, to celebrate the communities who embrace those with Down Syndrome.  Every individual has a tent, and family and friends congregate for two hours before the walk even begins, as a symbol of our support for and celebration of people like you!!

So the next year, I thought I was prepared.  I hand-wrote a sign, "Fools for Jules," which I thought was a clever team name.  We also invited Grammy and Papa, who have been there every year and will come this year if we don't have flooding.

There's our tent, Grammy and Papa and, of course, Daddy.  And that's Ms. Beth, who was your occupational therapist.  It was a small tent, easily given to the whims of the wind, and I clearly can't make a poster, but we tried.  A woman who makes hair bows decided to give one to the cutest baby at the walk...which was you!  This didn't stay in your hair very long but was sweet.

And then we walked, with a few hundred other people.  

For the most part, you were in the stroller, but you did walk those last few steps:

So that was you, wearing a face-paint crown, in 2013.
In 2014, we went even BIGGER with a bigger tent, a sign designed by Grammy and Uncle Lee's friend John, and more people, including your Godfamily.  Here you are with your Godsister:

You two had matching tutus (okay, somewhat matching) to go with the idea that you are the Queen and we are your fools.  Your godsister would have nothing of it, though...she had to be a princess, and so our grand court tradition was born.  And what would fools be without fool hats?

Here we all are, wearing them.  YOu also started a grand tradition of falling asleep during the Buddy Walk, since we usually get there at 10, you play hard, and we don't start walking until 2:30.  So this year I'll keep you home until noon, and hopefully you will have more energy.  And just to highlight a few more people who came, Grammy and Papa were there again, as always--

And this year, you were big enough to attempt the jump castles!

(that's a rare picture with me since I usually take the pictures :).
Last year, you continued your "tradition" of sleeping--actually, you were pretty sick for the entire walk, which was unfortunate since everyone came again to support you, and we had snacks this time.

You were not feeling great, but your godsister was able to make a new friend, Kayla.  Check out her mom's blog at http://mdbeau.blogspot.com/.

Of course, we still all gathered in front of the tent, and oh yes!  I forgot to say that Zoe, your Godparents' dog, was there.  See her out in front?
So this year, we have the sign, we might not have many people because of a hurricane headed in our direction, but I pray that you'll be awake and be able to appreciate that this HUGE event is put on to celebrate people like YOU!  It's not a "charity" event--we are not trying to cure anything or do something that would involve a simple check or even, as I found out the hard way, a "simple" walk.  In order to do the Buddy Walk right, I've learned to look at it like Christmas: to prepare, buy materials, make sure everyone has gotten plenty of rest, publicize it (because, let's face it, it's not Christmas), and then celebrate the heck out of you.  It's a lot to celebrate.  xxoo,  mama

World Traveler!

Dear Jules,
So when we told people that we were going on a big European adventure and that we would be taking trains through Italy, into Austria, and to Hungary, they thought we were crazy.  Who takes a four-year-old, much less a four-year-old with "special needs," on a trip like that?!
I must admit that I was anxious when we started out.  What if you couldn't sleep on the train beds? What if you fell off?  What if we got pickpocketed?
As often (almost always) happens in life, the things we are most anxious about are not the things that end up causing us worry.  A few things were difficult on the trip.  First of all, you did not sleep on the plane all the way to Fumicino Airport in Rome.  You insisted on watching television the entire time, playing with me and with Daddy--who desperately wanted to sleep--until we finally landed.  Then, when we got to baggage claim, when were were only a few hours away from being at the hotel, there was this:

We couldn't check in right away, of course, so we ended up taking you to a restaurant and our first Italian meal, which you slept through.  Also on that fateful plane ride, a little kid kept on sneezing and not covering his mouth and, of course, you caught a cold that, during the course of our trip, would develop into an ear infection so bad that your eyes were oozing mucus.  That is why your glasses are so conspicuously absent in these pictures!  When we got to Hungary, Nagyi's wonderful friend, Agi, had her daughter examine you, and you were finally given antibiotics for a sinus infection.  I am so grateful that Nagyi, Agi, and the medical staff at the Debrecen University Children's Clinic for taking such great care of you!  It did cause us difficulties.  You were so tired that you did not want to walk almost at all, Italy is not very accessible (only 2 of the metro stations had elevators), and so we ended up schlepping that stroller up and down many flights of stairs  (your Daddy made this into an art form, so that in Venice, he would bump you down the stairs and you would squeal with delight.  In Pompeii, he managed to get the stroller up huge rocks that the villagers would step on to avoid road debris).

So those were the bad things, but the good things far exceeded them.  You LOVED the train and slept just fine, we did not get pickpocketed (we came close, but an authority at the Rome train station warned us), and, despite the sinus infection, you thoroughly enjoyed everything, as you tend to do.

The very first day, to avoid sleeping and to maintain a schedule, we went to the Colosseum, which is nice because it is right outside of a subway stop.  You walk (dragging a stroller) up some stairs, and there it is:

The next day, we went to the Forum, which involved similar bicep exercises up stairs (and along the rocky paths) but was really worth it.  Every afternoon at three, we would retreat to our lovely hotel, the Relais 6, where we would take the most wonderful naps to escape the scorching sun.  This hotel was a real haven for us, and you became good friends with one of the staff, Enrico:

I would normally go for a run in the area, which I enjoyed, and then at night, we would all go in search of some gelato.  You became quite the connoisseur and would request it every day, signing vigorously when you did not get it.  You would start demurely signing ice cream--you sign it like you're licking an ice cream cone--and then, if we didn't pay attention, the licking would get more and more vigorous.  If we still did not get it, you would start signing and saying, louder and louder, EAT!  So the gelato was a hit:

One of your favorite things to do in Rome was to go to the fountains, where we could cool off and enjoy the spectacular architecture.  

And you also loved the Borghese gardens, where we finally found some shade and also went on your first (of many, I'm assuming) amusement park rides. 

In Pompeii, our accommodations were not as great--they put us in a handicapped accessible room (ironically enough considering the lack of accessibility) that had neither a tub nor a toilet seat nor an enclosed shower area.  But the ruins were amazing and you especially liked running around the amphitheatre.

And, because the people in Pompeii proper were not as friendly as those in Rome, we found our own haven in a little Greek restaurant (we ate there for two days straight).  Here you are with one of the owners:

And then we headed to Florence, the city of Michelangelo, Dante, museums galore...except that your mom planned for us to be there on a Monday, when everything was closed!  So what were we to do?  In the heat, we found a local swimming pool:

I did love how, even at the pool, the architecture of Florence was not forgotten!  And then we took a train to Venice, the city of gondolas, water, the Bridge of Sighs, but this is probably not what you remember.  For you, it was the city of birds.  And not only did you chase them, but you tried to stomp on them, with unequaled ferocity (unless you were signing for food).

From Venice, we took our first overnight train to Salzburg.   It wasn't great--the air conditioning was not working--but you did sleep and we made it at 4 a.m. to our hotel, also without air conditioning.  In fact, sweating profusely is one of my biggest memories of Salzburg.  That and the Sound of Music 

tour, which you really loved.

I had a video of the trip on the bus, but I can't find it any more, alas.  They played the soundtrack as we drove through the mountains, so that was pretty amazing.  

The other amazing thing in Salzburg was the Wasserspiel Hellbrunn, which was the inspiration of an Archbishop 400 years ago.  Basically, he wanted to invite guests to his house, get them drunk, and then have them be "surprised" by water.  Here is a table where they would sit and drink.  All of a sudden, water would splash up every seat, except for that of the archbishop Markus Sitticus.

In addition to this table, which you and I tried out, there were a variety of little "tricks," including a fountain in which the figure stuck out his tongue.  You loved this, and you also loved getting splashed!!

From Salzburg, we took another long train ride to Budapest, where we went to the Széchényi baths, which you, of course, enjoyed:

And then we went to Margit Island, which was amazing, mostly for its musical waterfall.  

We did return to Budapest at the end of our trip, but at this point, your father left to go back home, and we spent the rest of the time with family, which, because this is so long already, warrants a separate blog post!
Anyway, everyone said you wouldn't remember this trip, but one very smart person said you would remember the feelings associated with it.  I do hope that is true; I know that for me, being with you on this journey made it the trip of a lifetime.

It Takes a Village

Dear Jules,

Well, it's not totally official yet, but I received unanimous votes on my tenure on Tuesday from work. This means that we can stay here, you can go to school here, and I can keep working at this awesome place, the College of Charleston.  Maybe someday you can attend the REACH Program there.

It's been seven years (almost) of teaching in Charleston.  I remember my first day teaching; I lost my keys, couldn't get into my office, was in tears not knowing how I was going to get home.  I knew no one and felt so out of place.  Now I walk on campus and say 'hi' to almost everyone, from the groundspeople to the janitorial staff to my colleagues to my students.  It's so nice to feel that I'm somewhere I belong, somewhere I'm accepted, somewhere I'm even respected.

When you graduate from college of find a job (or whatever your goals will be), you will know this feeling: the feeling of moving through a world where you "fit."  It's not an easy thing to accomplish, and I know that, in some ways, it will be harder for you, but if anyone can do it, I know you can! And when you do, I want you to remember the people who helped you get to where you were going.

People congratulate me, but this accomplishment belongs equally to the people in my life who have pushed me on when I wanted to give up.  My dad, who you are named after, was always so proud of me; thankfully, he knew I was in a Ph.D. program before he passed away, and I just know he would be proud now, but he was the one who put in 50+ hour weeks working retail to support our family; he was the one who always did what he needed to do so that we could go to good colleges and get good jobs.

My mom, Nagyi, deserves perhaps even more of the credit.  She spent so many nights quizzing me before tests in junior high and high school; she helped me when I decided to apply for a Fulbright in Hungary; she drove me to my interview at Assumption when I was too anxious to go by myself; she always believed in me, even when I did not believe in myself.  At one point, my anxiety was so bad that I honestly don't know if I would be here right now if I could not have called her ever night, sometimes even at 3 a.m.  One time, she came to my apartment and held my hand so that I could sleep at night.  These are the unacknowledged sacrifices of a mother--they don't come with Ph.D.'s or "associate professor" titles, but I would not be here right now if it were not for her.

Ben, the love of my life, your Daddy, has always believed in me.  He's the smartest person I know, so it means a lot that he engages me intellectually, that he's always willing to talk about my teaching or about my research.  He has been there with me since my Ph.D. exam, through the dissertation defense, and obviously through these seven years.  He's seen me cry about article rejections and teaching evaluations, but he's always turned it around and made me believe in myself again.

My in-laws and Ben's family have been very supportive, and I would love to give a shout out to my mother-in-law, who always understood how important my job is to me, my father-in-law for his quiet but steady support, my brother-in-law, who really has the biggest heart ever, and especially Maggie, my sis-in-law, your aunt, who remembered the date of my tenure review and took the time to email and then call me.  That just meant so much to me.

And then there are my wonderful friends--Cindy, who has known me since our MA at Boston College, who was also there for me during that really tough time in Worcester, who was there when I was accepted to UNC and visited me when I felt equally out of place in a Ph.D. program, who flew down for my dissertation defense and my wedding, who is your wonderful Godmother, and without whom I don't know where I would be.  Eliza, who I met during our Ph.D. program, was there for me when I didn't know anything else.  Her and her husband, Mark, have accepted me as members of their family, have been so very supportive of me, and are also wonderful Godparents to you.  Liz, who I also met in the Ph.D. program, who has also been there for me when I needed to talk, is one of the best listeners I know, who is always excited and enthusiastic about life, who reminds me why I love literature so much.  Mike, who was my first friend in Chapel Hill and has heard about so much as I've gone through the Ph.D. and now tenure, and Sara, my friend who always reminds me to focus on what matters in life.  When I think about the service learning my students do, and I think about my own interest in service, I think of her.  Pam and Sandy have been there since, well, Kindergarten and second grade.  They've seen me develop from a shy, awkward, and perpetually naive/clumsy high schooler into a still clumsy but much less shy and awkward person.  I'm really blessed to have all of these people in my life.

So when I think about it, "it takes a village" not only to raise a child, but to enable us to get through life's up and downs and still stay above water.  I know there will be many more ups and downs on this road but, as I think about where I've gotten to, my heart feels extremely grateful.  I hope to some day be one of these people on your list, which will also include your Daddy, your grandparents, and your honorary sister Bertie.  And hopefully many, many more.

A Special Place

Dear Jules,
I wanted to write on your blog about a place you went to when you were not even walking, when you were a bit over a year old.  Before we put you in a school with everyone (all the friends I'm sure you have today), we wanted you to work on some basic skills like walking and communicating.  So your dad and I enrolled you in the Charles Webb Center.  This is a school for special-needs kids, but I'm not calling it "special" in that cheesy, slightly condescending way.  I have rarely been to a place where I have felt so much unconditional love, and not just for you (let's face it, you're a ham!), but also for children whose disabilities make it a bit harder for people to accept them.
For instance, one young girl has Cri du Chat syndrome.  She doesn't talk, but she is mobile and loves hugs (she would never let me go!).  Unfortunately she also bites and pinches, skills that you are slowly but surely also learning.  Yet the teachers always included her in educational activities, always gave her the hugs for which she hungered, and treated her just like you...just like everyone else.  I grew to love her, as I grew to love all of the kids there.  I'm crying as I write this because, without the support and love of this place, I don't think you'd be in such a great place as you begin in ECDC, the College of Charleston's (fully integrated) pre-school.  The teacher told me that yesterday, on your first day, you played with the kids, ate all of your food (no surprise!), read books, and made a few friends.  You didn't cry, you weren't rattled, you knew what to do and you did it, thanks to CWC.
So I wanted to post some pictures of just some of the people who made your time there so amazing.

This is Mrs. Washington, who runs the center (although Ms. Bonnie also did for a while!).  As her sign proclaims, her office door is always open.  In between fundraising and meeting with parents, she helps out in the classrooms, always helps to make lunch (have I mentioned how much I will miss not having to make lunch??), plays, ans is always up for a snuggle.  Her own son went to the Webb Center: just another reminder of the committment people have to this place.

We met Ms. Susan, the woman with the white (or, as my hair stylist would say, platinum blonde) hair even before she came to Webb!  One day, we were playing at the Children's Museum of the Lowcountry, and we met this woman who was very interested in playing with you.  She asked where you went to school, and when we said the Webb Center, she told us that she was applying to be a nurse there...and she got the job!!  Susan has been not only a great nurse and teacher but also a good friend to our family, and I hope that we stay in touch with her and her grandson, Kortez (on right).  Kortez was your best friend at the Webb Center; in fact, Ms. Bonnie used to call him your boyfriend because he would hold your hand and take you places!  One time, when your dad and I were going to a party, Ms. Susan and Kortez came to our house to take care of you.  Most special to me, though, is that Kortez was your buddy for Buddy Camp this year; we picked him up, you all played through the morning, and then I took you both for lunch before we returned to the Webb Center.  In fact, one time, you both had bathroom accidents in the middle of the park, so I ended up running across the park with two naked children!  (You parents will tell me this was a rookie mistake, and I admit it).

This is Katelyn, who came to work at Webb just this past summer.  You two formed such a bond, though, and you were always running to her, your arms open for just one more hug.  I will remember how much she loved you, but I will also remember her as your hairstylist.  Every day, you would come home with some complex hairstyle that I could never in my life imitate (in fact, I might take you by there for a touch-up...and do you cut, Katelyn?).  You two literally fell in love, and I also hope to be seeing more of her.

 I wish I knew how to make a collage, but here are some more pictures of you with people you spent a lot of time with and loved (and clearly there was a blue and coral color memo!).









Ms. Stephanie has been your teacher ever since March, when you were moved up to Toddler 2 (you 'graduated' from both the nursery and Toddler 1 during your time at Webb).  She also loves to hug you, has always been there with a smile and encouragement for me, and really cares for your well-being.  This summer you had some crappy (literally) diarrhea issues; at one period, you had an incident once a day!  Once we realized that it wasn't a virus and wasn't contagious, we took you right back to Webb, where Stephanie and Katelyn selflessly took care of you and put up with, well, the reek.  Stephanie has been such an asset to the Webb Center, and these kids are lucky to have her.

This picture is vintage Julia- I love it because it shows how much you two love one another.
And last but definitely not least, Ms. Bonnie was there for you as the interim head of the Webb Center, and then, for a good long while, as your Toddler 1 teacher.  I honestly cannot say enough good things about this woman.  Her voice, yelling "Julesie- Woolsie!!", every morning, never ceased to cheer me up.  She probably has the biggest heart of anyone I've met, and she cares about her kids's education.  In fact, I would come in sometimes at 4 (okay--rarely.  Those of you at Webb reading this know very well that I'm that parent who rushes in at 6 every day).  Well, when I did come in at 4 or even 5, I would find her still there (she got off work at 3), working on crafts, projects, decorations for the entire school.  She decorated every year for the Christmas Party, which was just amazing and meant so much to the kids and to their families.  When I asked her what her weekend plans were, she often responded that she had a lot of work to do on projects for her classroom.  As a person, but also as a teacher, this woman went above and beyond.  She has been at Webb for over 20 years, I think, and I think she's the soul of the place.  Her smile, her laugh, her boisterous voice, her artistic talent, and her big bear hugs just make the place what it is:

On your last day at Webb (we'll be back!!!), we had a cupcake party for you, and things got a bit out of hand:

Everyone had a great time, though, and I'll always remember the way you crammed entire cupcakes into your face as your friends sat around the table.  

You gained so many skills there--more importantly, I think, you got so much unconditional love there- that when I ask "who's a smart girl?" you point to yourself and say "me!".  This, I think, will put you in good stead as you join your peers without special needs. 

I also want to say to the people reading this in 2014 that some of these kids can't, for logistical reasons, be integrated.  For some of them, the Webb Center is the only place they can go, the only place that will fully accomodate and accept them.  Yet this center is run on a shoestring budget, mainly supported by the Disabilities Board of Charleston and by the Avondale 5K run.  If you click on this link, you'll see the sweetest video in the world, featuring Julia in the beginning!!!  Please consider running it (we will be there running with Jules), or donate to it, or just make a donation to this amazing place.  I feel so blessed that we heard about it from Julia's then-occupational therapist, and that we have been able to call these people family. 

As you move on, make new friends, I want you to remember what these people have done for you: for us.  You went from swinging in a baby swing all day at day care to crawling, then walking, then running down the long hallways and yelling "no, no, no!!."  You went from being spoon fed to feeding yourself.  You went from barely expressing yourself to becoming a diva (thanks a lot, Bonnie!).  You may have graduated, but the Webb Center can always count on me for anything.  You all have a piece of my heart.