What a crazy ride. what a beautiful girl. will write about the festivities once they are over, but for now, please join us in wishing the shiniest wiggliest girl alive a very very happy and healthy birthday.
While we wait for Haley’s donor to emerge, we have a guest blogger, tho not a guest in Haley’s life. Hearful Hematologist (Dr. G.) was the one who diagnosed Haley with CAMT. We had been at another hospital when we lucked into his clinic. Almost immediately, he knew what he was looking at. One of the most supportive doctors throughout Haley’s life, Heartful Hematologist is still integral in Haley’s care. I don’t know what we’d do without him. In his own words…
There is noone who can sound off like my dear little Haley. No matter how much noise there may be in clinic, i can always tell when she has arrived. As you may guess, the scale is still a very scary object. I like to believe that the intensity of her scream is a call out to me – “Hey Dr. G, I have arrived”. No matter how stressful the day might be, the call of Haley brings joy to us all and lightens the mood. What i find funny is tht the scale scares her so but i am free to examine her ears without complaint. She actually helps! I think that she likes to have her ears examined. Strange. But that’s our Haley – truly a lovable, adorable little wonder.
I can see the joy that Haley brings to her family and their friends. This same feeling pervades teh halls of CNMC when she is there. From the beginning she has been in charge and we all know it. I don’t mind. In the end, i still get what i want.
Over the years, i have watched this tiny little girl, who could barely hold my finger, go through a number of tests and procedures in order to diagnose her CAMT. She struggled some through her transplant. I wasn’t concerned. She is strong and was always in great hands with the MSKCC docs. Then she returned to me a beautiful little girl.
I can’t wait to see who she will become and of course i can’t wait for the next visit where i know that i will give her yet another part of my heart.
Dear Donor:
Hi! May name is Haley Well. Since I haven’t yet heard from you, I thought that perhaps a) you are on vacation (europeans take wonderfully long ones, unlike us Americans) or b) you wish not to be thanked but rather go about your life. Of course I want to thank you! Of course my family wants to thank you, and all of my friends and doctors and nurses and therapists. But if you are afraid of being thanked, then don’t worry. I won’t let anyone do so. But I’d love to meet you. Until that time, here are a few things about me so far:
1. I love puppies. All kinds, all breeds. The crazier the better, since I’m a bit of a pistol myself.
2. I love matzo ball soup, particularly when it’s made with bacon.
3. I love peeka (peanut) butter. Straight out of the jar. With a spoon. No need for bread or jelly, it just complicates things. My mother can’t understand it, since she hates the stuff. I’m wondering if you are the pb lover andit’s passed down through my bone marrow.
4. Do you like potato chips? Cuz I love them. can’t get enough. I also like marshmallows and purple lollipops. Do you have a sweet tooth?
5. I like to giggle. Hence the title of myblog. I like to smile and make others smile.
6. I like my Bono-style red glasses, my blue recorder, and my black shiny shoes. They all make me extra spunky.
7. I love swinging on anything I can wrap my tiny little fingertips around. You can always tell if I’m swinging if you hear me say “weeeee!”
8. I love to cuddle, I love being hugged, and I love being tickled, especially by a spring breeze (they’re sooo ticklish!).
9. I stretch my hamstrings with my mom– we do the downward dog, and I’ll do anything with the word “dog” in it.
10. I love a lot of things, but if I don’t like something, I’ll make sure you know it.
11. I can’t jump very well, but I use words like “actually” and “lovely”, and I can almost draw a heart balloon all by myself.
12. In order of magnitude, I’m afraid of the following things: bubble gum, needles, red rubber dinosaur (which conveniently disappeared one day).
13. I cheer on the New York Yankees (baseball), Washington Capitals (hockey), and the Maryland Terps (college basketball). I also cheer on my older sister, Anna, when she needs a bit of encouragement.
14. I love to sing, though Anna says I’m quite off key. That of course just makes me sing louder.
15. I love keyboards, ipods, cellphones… anything with buttons I can push, particularly if they have consequences like lighting up or ringing. I once called Copenhagen. I don’t even know where that is. Anna says it’s a country in Africa.
16. My family and their friends are the best, absolute best, and they love me and take care of me. They know they’re in good with me if I touch their chin and call them “cute.”
17. I like to sing Kelly Clarkson songs in front of the mirror, strumming my guitar sticker.
18: Things I hope to navigate one day are stairs, a ten-foot wave, and the web. Right now, the stairs are the trickiest.
19. Things I’ve learned from some of my aunts and uncles: How to imitate a moose (lowi), which color is bad for poop (jojo), how to put on a bindi (d), which teams not to pick for my tournament bracket (pretty), which teams to pick for my bracket (yak).
20. The greatest things I’ve learned so far: Don’t worry until you have to; smile anyway; you don’t need to run fast to run for president; birds can’t fly backwards very well (key if you’re running away from them so they can’t get to your graham crackers).
Every night, I blow kisses to you through the dark starry sky. I hope you get them. And I hope you want to meet me as much as I want to meet you. If I meet you, I probably will hug you, though I promise not to thank you, if you don’t want to.
Love, Haley J
