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! |
5 comments:
Can you believe how much you both love this little girl?? Isn"t it AMAZING --- our daughter -get this-- turned 16 yes 16 last month-- wow time went so fast ! E is a real sweetie! Cathy in Illinois
So happy for you that everything is going so well. She is absolutely beautiful! Please keep us in prayer as we continue our journey to our sweet girl, Ellie! I cannot wait to see her playing happily in our home, just like E is so very happy in yours.
Peace - Amiee
http://loveneverfails-gautreaux.blogspot.com/
ohh so cute!!!! :)
lovely***
Good for you T!! And so glad E and daddy got some 1:1 time too (and that it went well). Gotta love it when the cheese starts melting into the wood floor!!
Hey, I *LIKE* that Daddy logic -- if you're gonna go with the flow, GO with it! (Hey, I gotta stick up for my fellow Y-chromosome carriers!) I think it's absolutely great that E and her Baba had such a good day together... I mean, c'mon, how's a melty cheese stick stack up against some real Daddy-and-daughter bonding? ;-)
I'm also amazed at the photos of E during the transfusion. I'm a wreck just thinking of getting poked by a sharp pointy object, and there she is just chowin' down as nonchalant as can be... You've got yourselves an amazing little girl there! (But you already knew that, didn't you?)
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