Close to Home

Yesterday we heard some very sad news.  A family waiting on TA found out that their child died.  For those of you who don't know, waiting on TA is the very end of an extremely emotional, trying long haul.  That is not to say if losing your child at Day 2 it would be any less horrific than losing your child at Day 102, but it makes it even worse. 

Their child had thalassemia, and was from the same province, the same orphanage as E.  She had the same surname as our E.

By the time we were waiting on TA, E wasn't simply a sparkle in our eyes.  She was real, our daughter.  She had a name, she had a room in our house, she had toys.  Her pictures were everywhere, she had this blog in her honor.  She had outfits picked out and lots and lots of dreams for her life and future with us.

Needless to say, after lots of quiet, private tears, we hugged our E extra tight today, telling her how much we love her over and over again. She got an extra cookie, and we didn't balk at changing her Elmo video an extra 7 times.

I don't know what took this poor little girl from her parents, making her an angel much too soon.  I do know that there is a blood shortage in China.  I also know that even for children who do receive adequate transfusion therapy, they are NOT receiving appropriate chelation.  Oral chelators are not available, and subcutaneous chelation is not used correctly.

Before we adopted E, I read a study of children with thalassemia in Guangxi Autonomous Region.  While this study was small, it left me in shock.  By the sweet age of 5, 80% of the children with thalassemia major had died.  In this one study, by the age of 12, there were no children left.

Tonight, when E climbs into my bed, I will hug her extra close, and breathe "Wo Ai Ni" a thousand times into her ear until she drifts off to sleep.

Our thoughts our with the family who lost their sweet daughter with thalassemia much, much too soon. 

In the Dark

Every night since we came home from China, I've laid in bed with E until she fell asleep.  She often takes two hours to fall asleep--never less than 30 minutes.  That's a lot of time to spend silently in the dark, just surrounded by E's myriad stuffed animals and my thoughts.

One thing I've thought about alot is how much one little under 25 pound package can change your life.  We've replaced sleeping in on the weekends with never sleeping.  We've traded our famous cocktail "hours" with blowing bubbles before dinner.  Our long meals spent talking about work and what's going on with the world are replaced with stories about E's day and "If you don't eat one more bite then Elmo will be sad!" 

But, on the other hand, there are also many similarities.  Every morning I used to rush and be the last one running to catch the train as it was pulling away, coffee spilling everywhere.  Now E and I run down the street, dropping shoes, a water bottle, and a bag of Cheerios so we aren't late to story time and can get a good seat.  I was always fiercely loyal and protective of P...when anyone hurt him or would treat him unfairly, they would have to suffer my wrath 10x more than his own.  Now, I have that same "Mama Bear" instinct with E, wanting to defend her from the boy who grabbed her crayon or the girl who snuck ahead of her in line for the slide.  Before I turned in my ID and joined the ranks of the hardest job in the world--being a stay at home mom--I took orders from those senior to me at work.  Now I have a new boss, and although she might be tiny and cute, she's the toughest boss I've ever known.  I used to think that the love I had for P was the biggest, most amazing love there was.  It's still big and amazing, but my love for E is unlike any other, literally taking my breath away at times.

These are some of the things that I think about at night, in E's little bed.  Sure, sometimes I think about whether I'll ever paint my toes again or see the inside of a gym or start a conversation with something other than, "Guess what E did today?" or pee alone, but mostly I think about the incredible ways that E has changed and added to my life, and what it's like to be the luckiest woman in the world.

Happy Easter!

And what a happy Easter it was!  From start to finish, it couldn't have been any more fun or perfect.  E had a great time, and P and I are learning how fun it is to have a little one to celebrate the holidays (and every day!) with.  I guess before we had E, we really didn't know what we were missing.  Now, we can't imagine not having her here.  Every little moment is extra special because we are sharing it with our daughter whom we love so very much.

Last night, we got to share one of our holiday traditions of coloring eggs with E.  We spent a fair amount of time chasing the runaway eggs as they rolled all over the kitchen, and most of them ended up broken, but it was a lot of fun. 

After E went to bed, P and I had a summit about where to put her basket and the best placement of the eggs for her Easter egg hunt.  If you know us, you would not be surprised to hear that we discussed the merits of each location and switched things around until they were perfect for our little Easter egg hunter. 

This morning, E got a little sand pail to collect her eggs in, and after only one egg, she totally got the idea of hunting for them.  After she collected them all, she had to go back through the house several times pointing out where the eggs she found had been.  She seemed to have as much fun re-living the hunt as she did hunting!  Bonus!  Finally she found her basket, filled with all kinds of fun stuff and yummy treats.  She was one happy girl!

After our Easter egg hunt, we dressed E up in a traditional Chinese silk dress that we got in Guangzhou.  When we bought it, we weren't planning on using it for E's Easter dress, but the lilac color turned out to be perfect for the day.  After a quick photo session, we headed out for lots of visiting and fun. 

Three months ago this very night was the last night before we met our beautiful daughter . . . she has transformed the nervousness and uncertainty that overhwhelmed us that night into wonderment and joy.  Although we often daydream on cold, cloudy days like this about afternoons at the beach, and showing our favorite spots to E this summer, we do our best to enjoy the dropped eggs, Elmo fascination, and Frankie Valli sing alongs that unfold every day.  Thank you, E, for giving us such a *happy,* memorable Easter.

Ice Cream

This video shows just how excited E gets about having her ice cream.  Enjoy the cuteness!

Mama's Day Out

No, Mama did not get a Spa Day or haircut or even visit the dentist for fun.  I don't think I'll be doing any of that until E turns 12.  I hope P doesn't mind clogged pores, Rapunzel hair, and rotten teeth.

I was invited by some global leaders of a huge pharmaceutical company to come and speak about thalassemia and my life and experiences with it.  They were excited by the fact that I could speak about it on so many levels:  as a patient, as a parent, and as a clinical researcher.  Unfortunately, the meeting was in New Jersey, not Miami but other than that it was an amazing experience that I am honored to have been a part of.

It was also E's first day without Mama.  Baba took the reins for a day and worked from home.  It started off a little rocky with a 5am wakeup.  E was pretty rattled by what was going on around her.  One minute she'd be happily helping me get my shoes, and the next she'd be crying, realizing why I was getting my shoes.  As the towncar zipped me away, little E was in the front window with the saddest face I've ever seen on her, crying big, big tears.  I was getting a little misty myself.

After that, things really turned around!  Besides saying Mama a reported 1,723 times, there were no more tears from little E.  She and Baba had a good day together.  When I came home, E greeted me at the door with the biggest smile, in the craziest, most mis-matched outfit I'd ever seen.  (P said, "I couldn't find anything to match the top so I figured if it wasn't going to match, it might as well REALLY not match."  Nice daddy logic.)  The house looked like a bomb hit it, but in P's defense, he was working from home so he could not clean up after every meal and snack like I do because he had to get back to work.  (Although, it wouldn't have killed him to pick up some of the larger items such as a half cheese stick melting into the floor since it was 80 degrees out.)  Other than that, everyone survived unscathed. 

Since then E has been particularly clingy to me--wanting to be fed by me while rubbing her back, to sit on my lap, to have me cradle her like a baby.  And as I cradled her, she looked up at me with her huge eyes and a look of peace, satisfaction, happiness, and calm was on her precious face.  She deserves a little extra Mama after a day without.

I think Mama's Day Out was good on so many levels.  Most importantly, E saw that Mama always comes back.  In addition, I got to do something important for patients with thalassemia, and personally fulfilling for myself, too.  And Baba got to see what a day alone with E is really like.  It's funny, one of the guys at the meeting jokingly said that, "No father should have to experience that."  I retorted, "Yes, every father absolutely should!"

Here are a few recent pics, including this week's transfusion which went very well.

Hanging out at Boston Common...

At Children's Hospital Boston for a transfusion...

Did we come here to get blood or a bagel?

"Nurse, help her with that remote please!"

Chillin' on the couch...

Is that Rita Hayworth, or Emmie?

Look at that precious face!

Emmie Go Bragh

I am not one of those people who consider themselves Irish on St. Patrick's Day.  When someone says, "But everyone is Irish on St. Paddy's Day!!" I'm like, "Um, no, really I'm not.  Even a little bit.  Still Italian, but thanks for trying."  Nonetheless, I absolutely love to celebrate any and every culture and ethnicity, especially through food.  For instance, we always celebrate Cinco de Mayo, and we celebrated Chinese New Year long before E came into our lives.

Since P is very Irish, I always like to make a big deal out of St. Patrick's Day with decorations and food.  In fact, I get way more excited about the day than he does of his namesake.  This year was even better because E was in on all of the festivities.  I made delicious whole wheat Irish soda bread and corned beef and cabbage (yes, blah, blah, I know "real" Irish people in Ireland do not eat this...but we are "fake" Irish people in the US so chill out).

Here are some photos of the fun!

* Before you call DSS, this is an unopened can of beer.

E's asleep...time for some Bailey's...my personal favorite part of St. Patrick's Day!

Two Months!

Two months ago, half the world away, a scared little girl walked down the hall of the 22nd floor of the Marriott in Nanning, into our hotel room, into our lives, and became our daughter forever.

It wasn't a fairy tale beginning, and there have been plenty of rough times since, but it has been the BEST. THING. EVER.

I remember worrying in that hotel in Nanning whether our daughter would ever smile, ever give kisses, ever have feelings for us. 

The face of our little girl, two months later:

E is growing into a happy, smiling, loving, tender, compassionate, funny little girl.  She has some hysterical quirks, and we spend hours laughing at her expressions and silly ways.  She gives me kisses and hugs and even kissed Baba today!  We know that we still have a long way to go with our bonding with E, but in just two months, our family has grown in leaps and bounds.

I'm headed upstairs for one of E's favorite times of the day...when Mama lays down with her to go "Night Night."  We'll cuddle and canoodle, I'll sing "Itsy Bitsy Spider" 30 times, and she'll gesture for me to rub her hands and feet.  Then, when it's time to go to sleep, I'll close my eyes and pretend to be asleep.  E will put one hand on my face.  With the other, she'll take my hand, hold it to her face, and kiss it over and over and over again.  I guess it's one of my favorite times of the day, too.

We love you, E!  Happy Two Month Anniversary!