The Heroes We Need

I don’t know what I thought motherhood was going to be like so many years ago, but whatever I thought it was, I was wrong.

I recently ran across this quote from Joan Ryan, author of the book, The Water Giver:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that he is exactly the person he is supposed to be.  And that, if you’re lucky, he might just be the teacher who turns you into the person you are supposed to be.”

Of course this reminded me of the quote from Batman, our kids aren’t the heroes we deserve but  the heroes we need.

A few weeks ago, I was fortunate enough to hear the remarkable story of Ario Nour and his family.  Ario had a brain tumor and had to go through a therapy that requires you to remain perfectly still with a mask on your face as you are put on a medical bed in a room, alone, while you have targeted radiation therapy.  It’s called proton beam therapy, and it’s necessary for little kids, to zap the tumor but save the precious brain tissue surrounding it.  As you can imagine, this can be terrifying and many children need anesthesia to undergo this treatment.  The problem is, this isn’t a one time treatment, it’s five days a week for many weeks.  That’s a lot of anesthesia.

Ario, at the age of seven, was very clear when he began his treatment:  he didn’t want anesthesia every day, he would find a way to stay still all by himself.  And he did.  The nurses and social workers were so impressed with him that they had an idea:  Maybe Ario could teach other kids to lay still too.  He tried mentoring another child. It worked.

And this peer mentoring program was born. Kids with brain tumors teaching kids with brain tumors what to expect, what to do, how to lay still.  To practice at home, before the treatment, kids try lying on the couch for increased amounts of time, often with something over their faces, like a washcloth or a spaghetti strainer.  They are allowed to listen to music, books on tape, or something else that will keep them occupied.

Then they get their mask specially made to form fit their face. They get to decorate it, and they use it every time they get treatment.

Other kids, after going through treatment and surviving, went on to mentor other kids.  They are proud to be the experts at something, and to show newbies who are sick and scared that they’ve done it and succeeded. That it was possible.

And the program grew.  It wasn’t just one kid helping one kid. It was a program.  Ario had started a peer mentoring program.

I got to hear him talk at the Family Centered Rounds at Massachusetts General Hospital for Children. Ario has had to go back three times for more treatments.  (Read:  He’s had more than one brain tumor.)  Now he’s in high school, and he’s a normal kid.  Smart, shy, humble.

His parents spoke too.  Not only do they support Ario’s efforts for the peer-to-peer program, but they also support and ride with him for TEAM ARIO, where they ride their bikes 50 miles in the Granite State Quest and raise money to fight pediatric cancer.  Ario and his family have raised over $300,000 and Ario has been honored as one of “The One Hundred.”  It’s a dinner that honors one hundred people at Massachusetts General Hospital who have worked hard to fight cancer.

As I listened to this story, truly an inspirational story, it’s important to remember, Ario isn’t cured. He has recurring cancer.  And his parents have this burden to carry, something no parent ever wants to deal with.  And yet, here they are, parents of a child who started a peer-to-peer program, who’s raised hundreds of thousands of dollars, and yet, who is still chronically ill.

He’s not the hero they deserve, but he may be the hero they need.

Of course, Ario is a dramatic example, but think about your kids and what they have taught you. Have they taught you patience?  Selflessness?  Sharing? Have they taught you how to communicate better or how to fight more fairly?  Mine have.

I’m including the video of Ario here, for you to watch. Grab your tissues.

And take a moment to think about how your kids have changed you for the better.

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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.

 

“Wonder”: Review by a Mom of a Sick Kid.

The movie “Wonder” is the story of a young boy, Auggie, who has a facial deformity.  He has been in an out of the hospital for his entire life. The whole family revolves around his care, and everything else gets put on hold:  Mom’s academic career, sister’s attention, and poor dad doesn’t even get a chapter devoted to him.  Auggie, however, has the hardest time, he knows that he looks different from other kids, and now he has to face the horror of going to school for the first time, in *gasp* middle school.  Now, let’s just say it here and now, middle school is tough for everyone involved, but to start at a school for the first time with a noticeable difference, well, that makes it all the harder.

I admit, I cried for at least 75% of the movie “Wonder.” (Wendy cried for the whole movie.)  And why not, there were moments that I could relate to, because at some point in her childhood, my beautiful teenage daughter looked different from other kids, but she was too young to notice.

Because of Wendy’s incredibly high blood pressure, she was taking five different  blood pressure medications.  One of them, minoxidil, is a vasodilator; it expands the blood vessels, which lowers the blood pressure.  You might have heard of the drug, minoxidil, it’s the main drug in Rogaine.  It’s side effect is that you grow extra hair, hair that is darker and more coarse.  For Wendy, she went from a blond to a brunette in just a few months, and her hair grew so quickly that I needed to get her hair cut every three weeks.

Wendy had other things going on, a patch that she wore just below her collar bone for another drug that helped control her blood pressure, and the hair wasn’t just on her head, it was all over:  arms, legs, forehead, back.  She looked….well….different.   Obviously, different.

Wendy was only four, and being the vibrant child that she was, she didn’t notice. We still went to museums and the park, and walked to the hospital twice a week for blood work.  She still swam in the public pool and played in the splash parks. She had an easy smile and a friendly, outgoing personality with other kids.

But the other moms, well, they looked a little nervous around my child.  And the kids, well, they would ask what was wrong with Wendy, why she looked like that.  Thank God, Wendy never noticed.  I would explain that Wendy has an illness and she takes a special medicine to make her feel better, but the medicine makes her grow extra hair.  That satisfied the other kids, maybe not so much the other moms.

Then there were the times where people who knew Wendy didn’t recognize her because she had gone from a blond to a brunette, because she had the puffy cheeks due to her kidney failure, because she had the patch below her collar bone.  Those people would see me and ask where Wendy was, and then visibly startle when I pointed to the child next to me.  Those are the ones Wendy noticed.

There was a woman who cut Wendy’s hair, every three weeks, at Supercuts. We would arrive, and the other beauticians were visibly concerned over how to cut Wendy’s hair, and this woman would just scoop her up, ask about her day, give her two lollipops, and say, “See you in three weeks.” I loved that woman, because she didn’t make a big deal about Wendy.  Wendy was just another kid to that woman.

I cried because I could relate to some, but not all, of the feelings that the mother, played by Julia Roberts, was going through.  Yep, my life had been put on hold.  Yep, my life revolved around Wendy’s care.  Yep, I still worry that Penny doesn’t get enough attention.  Yep, I worry about every new step forward that Wendy has to take ( like going to Washington DC this spring with her 8th grade class for a week without me.  I think I might die.)

But the truth is, that most of us, thankfully, are not Auggie, and we are not Auggie’s mom.  Most of us aren’t Auggie’s sister, or dad.

Most of us are Auggie’s friend, Jack Will.

Jack knows that Auggie is different, and doesn’t know what to do about it.  He’s nice to Auggie because he has been asked to be, and because he is a scholarship student, he’s feeling like he really has to do it.  But he learns that Auggie is sweet and kind and funny and smart, and they really become friends.  But Jack still knows that Auggie looks different. Jack says the wrong thing on Halloween, about his appearance, hurting Augie’s feelings and having to make amends.  Spoiler alert:  it turns out to be ok. Jack Will realizes his mistake when Auggie starts to avoid him.

Jack was my favorite in the book, and he was my favorite in the movie because while Auggie’s family doesn’t have much choice, they need to be supportive of Auggie.  Jack does have a choice, and he chooses to be kind.  Which is the point of the story.

The author, R.J. Palacio, wrote the book Wonder because of a real life experience.  Her young son burst out crying, seeing the face of a young boy with a facial deformity at an ice cream shop.  She was so mortified, because her child wasn’t emotionally prepared to be kind to this young boy, and she went home and wrote the book, from multiple perspectives.  Each perspective in the book speaks from one of the characters (except the Dad, which gets me angry).  Each perspective shows that living life with a loved one who is ill isn’t easy, but you make room for kindness. Bad days will happen, but you move forward, together.

Auggie’s presence changed the tenor of the school, because he was kind as well.  And the other students became protective of him when they saw how the outside world viewed him because they didn’t know him.  You would be tempted to say that the moral of “Wonder” is don’t judge a book by it’s cover, but you would only be half right.

The other half of the moral is it’s ok to be afraid and kind at the same time.

That’s the lesson we want to teach our kids.

 

 

Thanks, Carepages.

Carepages goes dark tomorrow and I am going to miss it.  What is Carepages?  It was a health blog that you signed up for to notify your loved ones about your health journey.  We have used it as a lifeline for the past ten years.  When Wendy was super sick, we wrote every day, sometimes twice a day, to keep our loved ones up to date.  As she got stronger and better, we reduced our notifications.  Recently we only used it to mark big milestones.

The thing I loved about Carepages is that it made you really sit down and take stock of the medical day.  In any given day of craziness, it was good to really evaluate what was good, what was bad, and what were the hopes for the next day. And it buoyed our spirits to get messages from our family and friends telling us that they were thinking about us, praying for us, praying for Wendy.  Hospitals can feel isolating, and it was nice to know that people were supporting us from afar.

Today I spent much of the day copying and pasting all of the updates, over 200 of them, over the course of our 10 year medical journey.  I have to be honest, I wept reading a lot of the updates.  Wendy was so young and sick, and I knew, reading the updates, that things were going to get worse before they were going to get better.  I was so young too, and angry at our situation, the unfairness of it all. In 2007 and 2008 Wendy spent every holiday in the hospital, some 180 days.  I left my job, and Michael took an extended leave.  I slept less than three feet from my parents in a hotel room for months, and it became clear that we needed to move into an apartment.  We had two blissful hours with Wendy in the apartment at Christmas, so she could open up her presents, before we had to bring her back to the hospital.

I marked the day that Wendy’s kidneys started working again, the first time we made it home, the day she coded in the PICU, the day she was put on the transplant list. I read the day of her transplant, and the first anniversary, the second anniversary, the fifth anniversary.

As I read, I also read messages from loved ones who hadn’t gotten married yet, or hadn’t had their babies yet.  Friends who hadn’t gotten divorced yet.  Stalwart friends who were battling their own illnesses and have since passed away.  I am so grateful for those messages, to be able to read them, to be able to keep them.

At some point, Michael and I had decided to make Wendy’s Carepage public, so that other people could take comfort in her story, as I had taken comfort in the stories of others over the years, especially when we were looking for stories of kidney transplants.  We had people follow us from all over the world, and they wrote messages of support as well.

I’m going to miss Carepages, it was a part of our life for a long time. Now in the age of facebook and WordPress, it seems almost quaint to have a blog site dedicated just to an illness journey.  Perhaps that’s why it’s going away.  But it marked our lives.   It marked Wendy’s life, her health, her strength.

Today, Carepages showed me how far we’ve come.  A new town, a new home, a new baby (now eight years old), and new friendships along with the strengthening of old friendships. So thank you, Carepages, for everything, for the good, the bad, and the ugly.

Thank you for the hope.  Thank you for the journey.

 

Communication & Hope, Thanks to Hospital Chaplains.

What engenders hope?  Who holds hope?  How can a person foster hope in another?

These ideas roll around in my head, when I am meditating, or when I am exercising. I read about hope, I study it, I read to see what others have said about it.  I know, it’s unusual, but I usually find that when I’m on a project like this, there’s a reason, that things connect to it like a magnet.

Recently, I was sent two pieces of information about Hospital Chaplains, and how they engender hope through communication.  These pieces came to me from different sources, one from the Pediatric Chaplain at Massachusetts General Hospital, and one from the Bishop of the Delaware-Maryland Synod for the Evangelical Lutheran Church.   Both of them saw these items and thought I’d be able to blog about them.  And these stories have been rolling around in my head, along with thoughts about communication and hope.

I know, it’s a pretty messy place inside my brain.

The Chaplain of MGH sent me information about the Wilbert Foundation.  The Wilbert Foundation is a foundation that supports pediatric chaplains of hospitals, with support groups, continuing education training….and they Provide Bertie Bear Boxes.

Bertie Bear

This is Bertie Bear.

Bertie Bear comes in a box that is designed to look like his home.  He comes with a backpack, a note pad, and a maze. These are meant to keep the sick and sometimes scared child busy.  But these are not the most important things in the box.  The most important thing is the white board:

White Board with Emotions.PNG

The white board comes with emotions and a prompt.  So the child can write how he or she is feeling, and why that is.  Imagine if doctors walked into the hospital room and could tell by a glance not only how you are feeling physically, but what your emotional state is too. When emotions go up, vocabulary goes down, it’s hard to talk about how you are feeling.  Imagine if you didn’t have to say it — you could just put a magnet on a board.

Now imagine if you couldn’t speak at all.

That’s when the  other piece of information came to me from Bishop Bill Gohl.  It was about a chaplain who designed a board that allows people in the ICU to express their emotions and ask for simple comforts.  It’s called a spiritual care board, but again, it serves many more purposes:

Spiritual Care Board.PNG

The idea with the spiritual care board is that you can discuss your emotions, and then ask for help. Perhaps you are feeling helpless, and would like to have someone read to you.  Perhaps you are feeling uneasy and would like to have someone hold your hand.  You can point to the pictures, and a caretaker can understand what you want.

Imagine the relief when your emotional pain is registered and attended to when your physical pain is also registered and attended to.  That’s when real healing begins.

When people feel heard, when they are able to communicate, they feel more hopeful that they will get better.  They feel that they can begin to move forward.  These are powerful tools that can and should be used in both pediatric and adult hospitals, don’t you think?

Here is the link to the Wilbert Foundation, to learn more about Bertie Bears.

Here is a link to a CNN story about the Spiritual Care Boards.

Consider mentioning these to your local hospital, or your congregation.  It might be worth a sponsorship from your church, synagogue, or mosque.

More communication is needed in this world.  So is more hope.