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!"|
|Is that Rita Hayworth, or Emmie?|
|Look at that precious face!|