Last Minute Wishes

Sometimes the season gets us down. There’s a lot of expectations to make the holidays picture perfect, and a lot of times we just can’t live up to all of that, any of us.  And as the end of the year winds down, it’s nice to take stock of the year, see what our successes are, and where we were found wanting.

Brave Fragile Warriors did not have as many posts as last year, my attention was divided and I just didn’t write as much. The first year, I was determined to write once a week, but I realized not many people want to read a once-a-week-post, so I wrote instead when the spirit moved me.  Hopefully that means that my posts were richer and more meaningful.  Hey, a girl can hope, right?  When I look at the analytics, it was viewed in 70 countries around the world.  That’s pretty cool.    I was also contacted to reprint my posts in Today’s Kids In Motion, and The World Transplant Games asked if they could put my blog post in their newsletter (note:  the link is to a PDF).  Probably the biggest part was that one of the blog posts is now in the chapter of a book, The Power of Moments, by the Heath Brothers.  These are huge honors and I feel really lucky that these stories are getting out there.

I did a lot more public speaking this year than I ever expected to (outside of my classroom, of course.)  Topics ranged from the importance of telling your story, to helping to minimize anxiety in an Emergency Room Setting, to creating partnerships within the hospital between patients and providers, and what it looks like to be the parent of a sick kid.  All of these topics are near and dear to my heart, but honestly, public speaking is not my favorite thing in the world.

I also spent a lot of time, both on the blog and in person, advocating for the health care of children.  It’s so important to speak up for kids who are sick, and for their parents who are in crisis.  For the first time ever, I wrote to my congressional representatives, and I even traveled to their offices to speak to their staffers.  I wrote a letter for STAT news that was published about the necessity of the Affordable Care Act for kids like my Wendy.  I worry about funding for CHIP that will only last through March, and I will keep fighting for funding for those kids as well.

I got to do one of my favorite things the other day, which was wrap presents for parents who have kids in the hospital for Christmas.  There are a number of charities that buy presents throughout the year and bring them all in to Massachusetts General Hospital so parents can “shop” for their sick kids and then we get to wrap the presents for them.  In fact, Brave Fragile Warriors was inspired because of this event a few years ago.  I love it because it’s easy, right?  I go in and wrap presents.  But the parents, who have had their kids in the hospital for who knows how long and who are in total crisis mode, are so grateful. It’s one less thing to worry about.  There were two sets of twins at the hospital, each with older siblings at home. One mom had a pile of knit hats, that she added along with her toys for her son who was going through chemotherapy and had lost his hair.  One mom separated her gifts for each child so that she had something to give to each of them. One mom was telling me that the Christmas Tree was still tied to the top of the car since last week because they had to go straight to the Emergency Room and hadn’t left the hospital since.  Think about that for a minute.  It made all of my crises seem rather small in comparison to twins in the hospital and a tree still tied to a car.

It’s too late for a lot of us to help kids and their families in crisis right now, this year, in person.  But I would suggest finding a charity to donate to, for kids, and you’ll feel better, even if your holiday isn’t going so well right now.  If you don’t have a favorite children’s charity, then I would suggest the Make A Wish Foundation.  They give kids with life threatening illnesses the chance to make one wish.  Whether it is to meet a personal hero, or to take a special trip, or to have a certain event.  When Wendy had her Make A Wish, she chose to go on a Disney Cruise, and I can honestly say, it was one of our first steps toward healing and feeling like a family again.  Other kids choose to swim with dolphins, or to be Batman for a day.  You get the idea.  For Wendy it was a big boat with a pool and water slide, and Mickey too.

Happy Holidays to you and yours.  Celebrate the season together.  Make good resolutions.  Rediscover gratitude.  Lend a helping hand to those who need it.

These are my last minute wishes for you.

 

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Sometimes You Win, Sometimes You Lose, Sometimes It Rains.

I’ve been thinking a lot about sportsmanship lately.  We  witnessed great teamwork and sportsmanship at the World Transplant Games in Malaga, Spain.  As I said in my previous post, I’m just so pleased that Wendy, and the rest of us for that matter, get to participate in these events.

The thing about the Transplant Games, is that every participant has a second chance at life, and so they are taking it.  That doesn’t mean that they are going to win their sport.  The games are competitive, but the point is that they’ve already won just by being there.  They are present because someone donated an organ and saved their life.  So, it really is a celebration of life, more than anything.  The competition is secondary, but let’s face it, it’s the reason we are all there; we can’t just sit around and think about how lucky we are all the time, we have to do something with it.

Wendy was asked at the World Transplant Games if she would fill in for a woman from Team USA for a swim relay.  Wendy was happy to do it.  But on the day of the relay, the woman decided that she was going to do the relay anyway.  You see, she was a double lung transplant recipient, as was her twin sister. They both had cystic fibrosis and both had double lung transplants in their twenties.  Her twin sister had died a few years ago.  This woman knew that this was likely going to be her last World Transplant Games, and even though she wasn’t feeling so hot, she wanted to do the relay.  Wendy will likely have many more World Transplant Games ahead of her, but for this woman, the experience was finite and she said as much.  Her mother and husband were there to cheer her on, and she wanted to complete what she had set out to do.  She swam and did well.    We cheered them on.  They didn’t win the medal.

It’s hard and yet an honor to bear witness to these moments, and to listen to these athletes acknowledge and give voice to their very real mortality.  It makes the athletic achievement more memorable knowing all those people have triumphed over their illnesses just to be there, knowing that they might not be back.  It’s humbling to know that your kid is in that boat as well.

It also allows you to see the big picture, and for your kids to see it too.

A few weeks later, Wendy was in a normal, healthy, kids triathlon.  She came in third for her age group, a fantastic feat.  But when it came time to announce the winners, Wendy’s name wasn’t called, and a girl who had a slower time was announced in her place.  Wendy looked at me, and so I went to the officials to ask what had happened.  It turned out that because of her transplant, she was in a different category in the computer, a category of one.  There was a mistake, but that other thirteen year old girl had already been given her trophy and was on her way home.

Wendy did not shed a single tear, did not display anger or frustration.

The organizers of the triathlon were apologetic, and wanted to announce her name anyway, announce that she was a kidney transplant patient and that she still came in third.  Wendy wasn’t interested in any of that.  She didn’t care that her name wasn’t called, she didn’t want it announced about her kidney.  She quietly shook the hands of the organizers and celebrities behind the grandstand, thanked them, and wrote down her address so they could send her a trophy.  That was it.

I was just as proud of her for that moment as I was during the World Transplant Games, when she won the gold medal for the 100 meter dash and broke the record for the games.  Why? Because she didn’t ruin the moment for anyone else, because the acclaim wasn’t the important part, but the recognition of the accomplishment was. She wasn’t a sore winner, or a sore loser.  She could see the big picture.

As we were driving home from the triathlon, I thought of the quote from Bull Durham, “Sometimes you win. Sometimes you lose.  Sometimes it rains.”

You just keep going, because you can.

And you’re grateful.

World Transplant Games: Community

We’ve recently come back from the World Transplant Games, in Malaga Spain. It is a bi-annual competition where transplant patients from around the word gather and compete in athletic events.  This year, over 1500 competitors came from over 50 countries.  Some teams had over 300 participants, some teams only had three participants.  All of them came to make connections and create community.

It used to be that people would identify themselves solely by the place where they were born, and while that is still true, people also identify themselves by who they are and what they’ve done, and they look for like minded people who share their experiences.   But what happens when you have a rather rare experience, like getting a solid organ transplant at a young age?  Wendy knows very few kids who have shared her experience, and she sometimes feels like a party of one.  It’s been important to Michael and Me to help her find her community.

The World Transplant Games are a great way for her to meet people from around the world who are just like her.

She competed in swim and track events. During those events, she met girls her age who also had organ transplants, but who were from Italy, Britain, Hungary, or Australia.  She and they would introduce themselves and gather before competitions, and then when it was time to compete, they would.  Then they would gather back together and giggle and exchange addresses.  All these girls, who were once gravely ill, who take medications multiple times a day, from all over the world, sharing this experience at the age of thirteen.

I don’t know what you were doing at the age of thirteen, but I was wondering if my mom could bring me to the Mall to meet my friends. I was not hanging out with kids from around the world who had organ transplants, and then competing my heart out when it was time.

Across the board, this group of girls broke world records in swim and track.  They are determined, they are fast.

Most of all, they are both defined by their transplants and transcend the commonly held belief that they are “sick kids”.  They are not.

They are warriors.

Then there is the group of men and women that Wendy met through Team USA.  We had over 150 competitors from all over the country.  They ranged in age from just younger than Wendy to members in their seventies.  They help to show her that yes, life has its ups and downs, but that you keep going.  I think (as a mom) that it’s super important for kids to get positive messages from adults who aren’t me, because at some point our kids turn our voices off.  So when Wendy was a part of the 4 x 100 relay race with women who were kidney, lung, and heart transplant patients, who taught her how to receive the baton, who showed her where to line, up, and who were her loudest cheering section while she ran, well those other women were real role models for her, and I am forever grateful to them.  They probably didn’t even know they had done anything.

In the coming days, I will be writing another post about Wendy and her individual journey at these games.  I’m super proud of her, and of her journey.  But this blog post had to come first.  This is a community worth celebrating, people who truly are living their best lives since they’ve been given a second chance.  Competitors who radiate gratitude at the ability to feel good and come together to compete.  A community that  supports each other, celebrates each other, claps for the person who comes in dead last as much (if not more) as the person who wins.  Because, and I say this without hyperbole, they have all won just by being there.

Wendy is lucky to be a part of this amazing community.

I am grateful to witness it.

Happy World Kidney Day From Frank

Happy World Kidney Day from Frank!

Who is Frank, you may ask?

Frank is the name Wendy has given to her Kidney.

I don’t know why.  She’s always known that her kidney came from a boy, she’s often called it her “boy kidney”.  But for some reason, this year (after having the kidney for eight years), she decided to name it.

Frank.  (He’s pictured above in his stuffed animal plush form.)

Wendy will be celebrating World Kidney Day this year by living her normal, average day.  She’ll have school, come home, probably walk to the library, set the table, have dinner, and maybe go to the gym.  I remember when she was so super sick and hoping that someday we would have a normal life.  Well, here it is.

Some would argue that it’s not really normal.

In the past week, Wendy has had four appointments at the hospital.  Two were with doctors, one with her endocrine nurse, and one kidney ultrasound.  She handled them all like a pro, like someone who has been doing this for many, many years.  Because, she has.  In fact, both doctors commented on the fact that it has almost been TEN YEARS since Wendy originally got sick with e-coli.  They just couldn’t believe it.  A decade of Wendy.

This weekend she will be swimming in her swim meet championships.  Next weekend she will be running a 4.4 mile run for her diabetes camp.  In between she will play indoor soccer.  She’s raising money to go to the World Transplant Games in Spain in June.  This kid just keeps moving and we do all that we can to support her, along with her doctors and our family and friends.

Sometimes I feel like the luckiest person in the world.  March 9th is one of those days thanks to Wendy’s donor and all the people who love and support her, and us, by extension.

Happy World Kidney Day!  From Frank!  From Wendy!  And from the rest of us!

PS:  March 9th is a GREAT DAY to sign up to be an organ donor if you haven’t already.  Go to Donate Life America and register today!