Happy Holidays

Happy Holidays and happy almost new year. I hope your holidays were as healthy and happy as mine. Since my last post I have cut my hair, finished my first semester of college, and turned nineteen. Overall it has been a very liberating couple of months since I left for college. For the first time in my life I am with almost all people who simply don't consider my medical “stuff.” It is so normal to be a college student. While my main group of friends at school know what I went through a couple years ago, each semester brings classmates, professors, and acquaintances who judge for my intellectual and moral merit, without the cloud of “holy bejeezus you did what?” always ringing in the back of their mind. That’s not to say that I don’t appreciate the kind and understanding people that went through my transplant journey with me, but that I am pleased that I have my first chance to start fresh. Anyway, I just wanted to say that I am happy and healthy, have a great family, great friends, great professors, and a spectacular roommate.

HCM- the disease which shall not be named

Q-What's the difference between Harry Potter's Super Villain and the heart condition I had fixed?

A- HCM is deadlier and more obscure

Voldemort was known far and wide and his name, spread fear throughout the wizarding world. Voldemort killed what, 200 wizards? Sudden cardiac arrest causes 325,000 deaths every year. Obviously not all of those deaths are due to HCM, but most are. Yet Voldemort is whispered about as "he who shall not be named" and HCM is never spoken of. On the news and in the media people say, "he collapsed with an unexpected heart problem," but they never use the words. It is my opinion, as an English major, that words have power. I challenge you, therefore to use the term Hypertrophic Cardiomyopothy once this month for Sudden Cardiac Arrest Awareness Month. The only way we can save lives is by raising awareness.

Freshmen Year Update

I have been at Simmons for six weeks. I am 1/16th of the way through my college career and I am loving it. I have friends who seem to like me. I am the vice president of my residence hall and I have yet to miss a class. Life is good. I have to go to the pharmacy almost every week and I have to go to the hospital once a month, but living just down the street makes it so that I can have a blood draw and not even be late to class. I think Simmons is a great place for me right due not only to its proximity to Childrens, but also due to the academic difficulty (challengign, but not impossible) and social situation (welcoming and friendly). In high school when I told someone that I had a heart transplant they got all awkward and weird. Here it doesn't seem to make a difference. People say "that's cool" and move on. Victoria from down the hall is writing a paper on cardiac screening in athletes and I wrote a personal narrative about missing most of sophmore year. Here, my transplant is a subject, but its more studied critically than personally attacked. That is what is wonderful about college.

School Roundup

Yesterday, Friday, was my last day of high school. It was pretty fun. The seniors had a big parade down the halls where we screamed, banged on the lockers, shot silly string and glitter everywhere, and blew horns and whistles. We also wrote all over my physics teachers wall with our names and some funny quotes in paint, which looked really good. I said goodbye to many of my teachers because I don't have any tests so the only time I will see my teachers again will be graduation. As I walked out of my last class I turned to a friend and said, "Guess what?"

He responded correctly, "What?"

Then I said. "I survived high school" which, as you know, has a somewhat special meaning to me. There was certainly a time in my life where I didn't think I would be walking down the stage in two weeks. I think it makes these moments a little more special for me, knowing that could have not happened.

Before the end, I went to a really neat conference in SUNY Plattsburgh about the Organization of American States where we all represented a country and discussed the issues of Latin America. It was the most fun school event since prom, and maybe ever because we had a dance and played games. I won an award for the most diplomatic of my group of kids.

I had a really good week wrapping up high school and going to the Model Organization of American States. I was proud to follow in my brother's footsteps as the winner of the fourth committee at the MOAS. I am glad to be done with high school because I struggled through a lot of it, but I am apprehensive about the future because its all completely unknown.

So Its Simmons

I haven't updated this very well, but I decided to go to Simmons College in the end of April. Simmons seems like a good fit for me, I think. I know because I kept saying to my mom "I feel like I really should go to BU" in the week before I decided. I really do want to go to this adorable college right on the Fenway, literally cut in two by my favorite place (sarcasm) Children's Hospital. Simmons College is an all women's college, which might not even be a bad thing because it will force me to go out with my friends and scope for boys. The Simmons mantra about that is "We're not an all-girls school with no men, we're an all-women's college with no boys." I'm just really excited and nervous to move away and be independent in a place where I know very few of the people around me. I have always been better with routines than change. I hope I can be very happy and successful at Simmons.

Also, Graduation is just around the corner. It truly is amazing that I am graduating with my class and that I am old enough to have voted this week. Graduating, moving away, voting, its all just so adult. I am very used to people taking care of me in some ways, so it will be interesting taking these next steps toward a normal, independent, mature life.

Finally, as a side note, I went to the hospital yesterday with a clean bill of health. It was a little sad, though, because my *cough cough" favorite *cough cough* transplant coordinator Jodi is leaving the hospital so I probably won't see her again soon. She really went through the whole ordeal with us. It was depressapointing to say goodbye, but she needs a life too, I suppose.

College

I now have all of my information about college. Here's how the cards fell

Accepted-
Binghamton
Endicott
Lesley
Boston University
Simmons

Waitlisted-
Northeastern

Rejected-
Harvard
Tufts

So, with that I am seriously looking at Simmons or Boston University. The others have reasons that disqualify themselves. Between those two, though, it is very close. BU is bigger, more expensive, has a better name, and would present a lot of opportunities, but Simmons is small, close-knit, supportive, and would be a better "deal" financially. Thing is, I would probably graduate with essentially the same degree at both places. I would go education with a concentration in creative writing or English. So, its just a matter of choosing the apples or the oranges. If anyone has an opinion, by all means, share. I am going to BU over spring break to find out a little more. I just really hope that they are good choices either way.

A Week In The Life

In the last seven days I have-
-attended school every day
-gone to coach the young swimmers at the Y
-been recognized at an award breakfast by my school and our local newspaper
-spoke at the Northeastern Police Ski Championships for the Make-a-Wish Foundation
-participated in the tapping of the junior members of the National Honor Society
-watched my Mock Trial team successfully defend their client
-did Yoga at the Y
-went on a road trip with my mother to PAX East in Boston to meet & Greet the Guild Wars guys
-and had a party with my co-swim coach

more details to follow on my awesome life

Interesting Pheonomenon

I noticed something interesting in Yoga tonight. We were doing neck and spine stretches and I would lean my head to the right stretching the left side of my neck and then do the right side of my neck. I had a significant and measurable less flexibility on my right side. I am chocking this up to some scar tissue or something from all the times I have been stabbed in the neck for heart biopsies. They always go in my neck in a very similar location on the right side, so, in theory there could be an effect with enough repetition. I have never heard of or noticed this before, but who knows?

My December

December has almost come and gone and everyone is looking to the New Year so I figured I'd give my audience a little re-cap. Like any month, I had my good days and my bad days, but overall this month was a little reminiscent of those weeks just before heart my transplant when I was fighting to keep up with school, activities, and other demands. I fought walking pneumonia for the last several weeks and the coughing, fatigue, and school-skipping all very de-ja-vuy. I am mostly over it now, but the whole ordeal was a little irritating because I'm already such a germaphobe it makes me wonder how I can prevent cases like this from continuing to interfere with my life in the future. In the long run this won't affect anything and the heart appears healthy, but I have some homework to catch up on and some teachers to avoid *sigh.*

On a more positive note I am officially an adult as I celebrated my eighteenth birthday a few weeks ago. My parents threw me a little "surprise party" in which some friends (young and old) came over to chill with me. It was a little unconventional because my parents had people file in as they showed up instead of all popping out at once. It made it all the more sweet to be surprised by each person. I was completely shocked each time someone showed up. It was great to be so celebrated and I felt very special. I now should feel all the responsibilities and rewards of adulthood, but yeah, right. I will feel all that once I go to college. For now it just means I get to sign my own name at the doctor's office. Other than that it is just another year.

I have been still working with Make-a-Wish in various ways and have seen the best and the worst of people at the mall selling angels. I know it is a hard time of year for a lot of people, what with all the financial pressure, but some parents could be reminded that their children can still get bad messages depending on what you teach them about charity and giving. I had a lot of comments about all of my involvement and most were extremely glad to see me representing such an awesome organization. I have met some pretty cool people and seen some incredible generosity. At least three teachers at Queensbury School bought these "Emily" angels for their students and in the class I have been working with in the fifth grade the students bought the angels themselves. I am sure there are more acts of kindness than I am aware of, but from what I have seen, many sick children will have their dreams come true. Make-a-Wish is one of the charities I am very proud of and thankful to, but I hope that everyone can find a spectacular group to identify with and support during the holidays. There is no good reason not to help your fellow man.

My Christmas was very successful. The best part of my holiday was seeing my brother again. He had been studying abroad so I had missed him a lot. My immediate family was very happy and, most importantly, together during the Christmas time. We followed all of our Christmas traditions like going out to Chritmas Eve lunch with some friends (thanks Rick and Karen) and having pancakes Christmas morning. It was all very festive and joyful.

To conclude the month we took my brother make to college in Geneseo and visited some family in Jamestown (both in New York for anyone far away). It was really a shame to leave my brother in college after only seeing him for about a week,, but I expect getting together with my family will only become more difficult as I head off to college.

I hope everyone had a lovely holiday season and was healthy. My December led me to a bit of ruin in school and gave me a sharp reminder that I could not expect health, but only be grateful for it and led me to have many fun times with friends and family. I think this month was very well-balanced in fun and frustration.

Thanks for reading,
Emily

Make-A-Wish Ambassador

Here is Emily providing a little pay-back to Make-A-Wish for the amazing experience they gave to us. She is available for other causes too, including the HCMA, Children's Hospital, and any other cause she supports.

We already said I'm famous so...

I am avoiding my government questions on the media. Do you think my teacher will take the excuse, I was on the local news tonight, I have been in the paper the last two days, and I will be in over 500 TV and radio commercials in the next month? Knowing the teacher, probably not. I could explain that my face will be out there. My story will be out there. I will be part of the media. What other questions are there? I don't think he would go for it, but this is a big deal to me. I went to a "kick-off" party tonight. I realized that I am incredibly proud and honored that Make-a-Wish chose the ArenaNet wish as one of the five best wishes of the hundred they granted in the last year. It is just entirely unbelievable. I would just like to clarify one thing because I know some ignoramus will say it.... I DID NOT get a heart transplant so I could be on TV. I AM NOT in the "biz" for fame or celebrity. I am doing this to help Make-a-Wish, that is a charity that truly helped me through a very depressing time and that gave me the best day(s?) of my life. My favorite part of making all these commercials? A boy named Roman. I met this amazing young man while doing these "press" things. He is ten years old and probably the most lovable guy you will ever meet. He had an amazing wish in Florida, and with a little encouragement he made some great ads. I think if nothing more, I have helped Roman's self-esteem, ANet's notoriety, and Make-a-Wish's mission by doing these commercials. If you live in NE New York you will most definitely hear or see Roman and I in the very near future.

My B

New rule- I have decided that when I post and am feeling well I will tell you what I am avoiding by posting. I think that is a fun little game, yes? Today, I am avoiding doing my physics homework on Energy and power. Now, on to the real post. I realized that in the last post I left out a piece of information that many know but that makes things make more sense to those that don't. Last month I went down to New York City Comic Con (a festival of thousands of geeks and freaks) to hang with some developers of Guild Wars 2 (my Make-a-Wish game.) It was a really special experience being the VIP of the VIPs while thousands of avid fans were vying for these guys attention. I got to play the game, hear about its development, and talk to the developers. I am so grateful to ANet for giving me "a second wish." I really am always astonished how nice they are. Anyway, this should clear up why I was on a low from not feeling like a rockstar, but being one of the millions.

Well I Just Wanted to Say HI

So, ironically I have never posted to this blog. It is in theory mine, though, so I have decided to start. Many people have likely lost interest, but don't worry I still have things to say. In the last two weeks I have realized the value of a blog. You can get your ideas and writing "published" with essentially no effort. Many people would kill for that opportunity. I am feeling pretty well, but am fairly busy with school, swimming, QuizBowl, college stuff, and other random things such as Make-a-Wish and helping at the Intermediate School. I know that all of this could crumble away if I get sick and the whole High School seems to have a cold, or flu, or mono this time of year, but I'm trying to stay focused on how well things are going at the moment. I feel so normal getting ready for college. Sure in my only interview so far I explained to the very nice man about how they ripped out my heart and my application screams heart transplant, but other than that I feel normal. I think I prefer feeling special. Hanging out with Make-a-Wish folks or the ArenaNet (Guild Wars) guys is better, but I have to stress out and deal with this like anyone else before I can be a real grown-up. I'll keep you posted.
Emily

No medical news is good news

It's been five months since we've posted anything here. The reason for the gap is that there is no medical news to follow. Since that is the best news it is worth posting, right? Emily finished up her junior year with good grades, completed her college boards with high scores, and has had a good summer teaching swimming at the YMCA and hanging out a lot. She went to visit her cousins in Chicago. She had one trip to Boston for a routine biopsy (it still seems that "routine biopsy" is a bit of an oxymoron) and that turned out well in the end. We had some concern when her blood work came out with electrolytes all messed up, but upon re-testing it was fine (thank you Dr. Blume for questioning the test before hospitalizing her when she had looked at Emily and knew from looking that she was ok). Here's a picture of her in Manhattan yesterday with our friend and now successful playwright and director, Jessica Kane, whose play, Two Sizes Two Small is the top rated play in New York's "Fringe Festival."

Good times

This past weekend was the Junior Prom. Emily invited two friends we met through the HCMA, Mikel and Richard, from the Boston area. She paired up with her friend Miranda and they went as a foursome. Miranda's been sick with an unknown intestinal disorder, and Richard has HCM, so we did not know if they were going to make it through the night. Everybody rallied and they had a great time, winning prizes at the after-party for basketball (Mikel and Richard are both top players) and roulette (Emily figured out that the colors were not evenly distributed and bet with the odds in her favor).


They stayed up until pick-up at 5 AM, and I flew the boys back to Boston at 11 AM and made it back home in time for the Angel Flight benefit concert at 2:30 PM. Emily was the special guest speaker, and once again rallied and did a good job. We were really tired last night!





It is so wonderful to have everything going smoothly. We really understand how tenuous the good times can be, and we have learned to appreciate the ease with which our lives are flowing. Emily is doing well in school, did great on the SATs, is planning for college, and is comfortable (mostly) with her meds and the maintenance issues of the transplant. Jeff is doing terrific at school, won an award for being the top "scholar athlete" swimmer in the State program, and was accepted into a prestigious mathematics program for the Fall in Budapest. Even our garden is doing well and we are enjoying fresh spinach that managed to overwinter on its own. Life is good.