“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.

 

 

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Where Unicorns Run Free

My cell phone rang one hot August evening, it was a friend from college.  He and I often text, but hardly ever speak on the phone. I could tell almost immediately that something was wrong.  It didn’t take him long to get to the point.

“Charlotte has been diagnosed with Type 1 Diabetes,” he said, and then “I thought maybe we should talk to you about it.”

We have been friends for twenty years.   He and Michael never lived more than two doors away from each other the entire four years of college.  One summer, the four of us all lived in the same apartment, working random landscaping jobs for extra money.  We had shared laughs and beers, practical jokes and serious moments, accidents and deaths and then marriages and births.  When Wendy was in the hospital, Charlotte’s mom was pregnant with her and she never came, but Charlotte’s dad came and mustered other friends to help.  He brought books and jokes.  He sometimes just sat with us when it was all too terrible for words.  That was ten years ago.

We are still present in each other’s lives.  Michael and Charlotte’s dad go out for an occasional beer after work.  Our kids just recently were in a film together to promote the National Park Service.  When I was approached about looking for kids who would be willing to tromp around Minute Man National Park with tri-corner hats and wooden muskets, I could not think of a more perfect family to share this adventure with.  The kids learned about the Revolutionary War, and the adults got two whole days to sit around together.

Once a year, all of the adults (including other college friends) go out for a giant fondue dinner, three courses, lots of wine, more jokes and more laughter.  This year, due to unforeseen circumstances, I had to cancel at the last minute, and these friends made a “Pocket Darcy”:  a picture of me pasted on a Popsicle stick, to be a part of all of the pictures so I would still feel loved and a part of the night, even though I was reading 300 names at a college commencement that had been rescheduled.

When Charlotte was diagnosed, her parents had an idea that something was wrong, she wasn’t acting like herself on their summer vacation.  But she was diagnosed just a few days before school was about to begin, and so they were thrown into a whole new world of counting carbs, and blood sugar checks and two am wake ups to check it again.  They had to trust the nurse with something they had only just began to tackle themselves.  They were nervous.  They called a few times, and we tried to be supportive.  Michael strictly instructed me to be a good listener, not to give out too much advice.  When I told Charlotte’s dad this he responded, “No, I don’t care how much advice you give, I just want to hear your voice and tell me it’s going to be ok.”  So that’s what I told him.

And it was the truth.  Sort of.

The truth is that when your daughter gets diagnosed with diabetes, your world changes. There’s a lot more structure built into every day, . There are a lot more plans that need to be made about birthday parties and sleep-overs.  There is more worry, there’s no way to sugar coat that.  It’s manageable, but it’s lots of worry.

Charlotte’s mom would occasionally email me for advice, and at some point she asked if Charlotte and Wendy could get together, and I suggested Wacky Weekend at The Clara Barton Center for Diabetic Girls.  I’ve written about the camp before, it’s Wendy’s favorite place, and I thought that Charlotte would love to try it out for a weekend, with just some time alone with Wendy. Oh, and with dozens of other kids who have diabetes too.

Charlotte was SUPER EXCITED ABOUT IT!!!!

Her mom and dad were nervous.  She was only ten; she had never been to sleepaway camp before.  They asked me if I would be the emergency contact for the forms.  Then we decided that maybe Charlotte’s parents should just spend the weekend with us.  Their younger child and our daughter Penny could soak up all of our attention, while Wendy and Charlotte enjoyed camp.

It was a win-win.  We dropped off the girls and then took the younger kids to museums and National Parks.  We had card games and sleepovers at our house.  But throughout the weekend, understandably, Charlotte’s parents were nervous that she would be unhappy. They were nervous that the nurses wouldn’t be used to her.  They were nervous that Charlotte would be homesick, or wouldn’t like the camp, or she and Wendy wouldn’t get along as roommates in a cabin.

All of these worries, while understandable, turned out to be unfounded.

Sunday afternoon, when we all arrived at camp to pick up the girls, Charlotte came running up to her camp, hugged them both, told them how much she loved the whole place, and gave them a tour.  She told them she really wanted to go there for the summer camp program.  She read them her journal that she wrote a few times a day about all the fun she was having, even though she missed her parents.

They cried.  Out of joy and relief.

And I had to walk outside and dry a few tears of my own. Who would have thought that this would be something that we shared too.  Our daughters with the same condition, going to the same camp, twenty years later.

I walked to the fire pit in the center of the camp, where bricks have names and inscriptions written in them along the walkway and around the ring of stones.  Written among the bricks is a poem by Shel Silverstein:

This Bridge

This bridge will only take you halfway there

To those mysterious lands you long to see;

Through gypsey camps and swirling Arab fairs

And moonlit walks where unicorns run free.

So come and walk awhile with me and share

The twisting trails and wondrous worlds I’ve known

But this bridge will only take you halfway there–

The last few steps you’ll have to take alone.  

Our girls would have a whole history without their parents, but with each other, at camp.  They wouldn’t be alone.   They would always have someone who understood what they were going through.

So would their parents.

There was something sweet in knowing that.

Hawkeyes’ New Tradition, Good Medicine

You know, sometimes you stumble upon a story and it stays with you for a long time.  This is one of those stories.   The University of Iowa Stead Family Children’s Hospital just recently opened a few new floors to their hospital.  These overlook the Hawkeye’s Stadium. The staff decided that they would dedicate a portion of the new construction to a “press box”, a place where sick kids who are inpatients and their families could watch the Hawkeyes play home games.

One mother had an idea, and she wrote to the team on facebook. Wouldn’t it be nice, she said, if at some point in the game, the whole stadium got up and waved to the kids watching in the hospital?

The team decided to do it.  They started in September.  Now, between the first and second quarter, the whole stadium stands up and waves to the kids in the hospital, and they wave back. It’s like a seventh inning stretch, but it  connects the two worlds.  It helps the sick kids and the families feel like they are being seen.  It creates awareness for those who go to the games that there are sick kids there all the time, through all the seasons, and through all the holidays.

And the best part, is it doesn’t cost a thing.

All because a mom of a sick kid wrote to a team, and told them what would be nice.  She told them what she wanted.  And it has changed a culture.

How amazing is that?

Here is a video of the story!  Watch the whole thing!

Watch and share with your friends.

Imagine if parents were always heard like this and communities helped in the healing process.

 

 

 

CAREgiving, defined

We will all be CAREgivers at some point in our lives, whether it be to a parent, a spouse, or a child.  When you are a parent of a chronically ill child, it is likely that your CAREgiving duties will overlap, because your child needs constant care, but other people in your life get sick as well.  It can feel overwhelming and isolating all at the same time.

I’ve been thinking a lot about what being a caregiver means, and I’ve come up with a helpful acronym.  A CAREgiver Coordiantes, Advocates, Manages Resources and Educates:

Coordinate.  You coordinate your child’s care.  You arrange for doctors’ appointments, other therapists appointments, prescriptions, food and drink limitations or special considerations. You calibrate any medical devices that your child needs.  You coordinate the care that is necessary daily, weekly, monthly yearly:  finding the people and the products that will best serve your child.

Advocate.  You make sure your child has what they need to be successful in all areas of their life.  You talk to your school administrators, you request an IEP (Individual Education Plan), or a 504 (Individual Medical Plan).  If your child needs certain accommodations, you arrange for them, whether it is a nut-free table at the school lunchroom, or an extra ramp to enter a room more smoothly. Advocating also means making sure the janitor doesn’t wipe the peanut tables and the peanut-free tables with the same sponge.  In my case, advocating means asking the school nurse to write a letter home at the beginning of the school year to remind parents to keep their kids home if they are sick, because they can put my daughter in the hospital. It can also mean speaking out for other children who have the same medical condition, or one similar.  Additionally, it might mean joining a Family Advisory Council or advocacy group in your child’s specific illness, to make the world a better place in the future for your kid and those like your kid.  It’s a large umbrella.

Resource management.  I don’t need to tell you this.  Medical supplies are expensive, even if they’re covered by insurance.  My daughter wears two medical devices, neither of which are fully covered by insurance.  Also not covered are the tegaderm films that go underneath each device.  Occasionally the devices cause a skin infection, so we have to make sure the certain antibiotic topical ointment that works is always at home and always available.  Her anti-rejection meds are covered by insurance but her supplements (that the anti-rejection meds strip from the body) are not.  Quarterly visits with specialists are necessary, along with their co-pays and the occasional trip to the Emergency Room rounds out the payment.  What isn’t said are the things that aren’t bought or are pushed off because of the payments that fulfill medical need.  I’ve had the same snow boots for twenty years and I live in New England, so they get used.  Most of my clothes come from thrift shops.  Michael wears his shoes until literally there are holes in the bottom.  This is how you make money stretch.  And I consider us to be very lucky, we live a good life, with good food and a warm home.

Educate.  Parents of chronically ill kids are constantly educating. We are educating the other adults in our child’s life:  for birthday parties and sleepovers and soccer games. When the time is right, parents educate their children about their illness and (hopefully) help them slowly transition to self-care.  We often educate the public, bringing awareness to our child’s condition, or the condition of those like him or her.  We also educate ourselves, we are mini-experts on our child’s diagnosis and condition, we keep up on the newest technologies and research studies.

This is what we do both as parents and as caregivers, but it’s amplified when you are both parenting your child, and also are a CAREgiver to them.  Now, add onto the fact that other people get sick too, in the short and the long run. What happens when your spouse or your parent, or God forbid, another child gets an extended illness.  Now all of your specialized training gets stretched or even thrown out the window.  You may know all there is to know about your child’s disease, but you’re not a medical professional, you don’t know all the illnesses.  You need to learn a new language, a new set of doctors, a new protocol of medicine.

It’s a terrible burden, and it’s constantly shifting.  It reminds me of the picture of the world, that is being held up by elephants on the back of a turtle.  It’s heavy, unpredictable and unrelenting.

I hate to be gloomy about this because there are beautiful moments to being present in the difficult moments of your loved ones, but it takes practice to see the beautiful moments, the sunrises and the warm cups of coffee, the smiles and the small favors.  None of us knew what we were signing up for when we decided to become parents, there was no instruction manual or warning label.

I take the month of November as a month of gratitude, and write down one thing a day that I’m grateful for.  Some things are quite large and some are tiny. but it’s an actual daily vigilance, because let’s face it, some days really suck.  But even in the worst days there is something to be thankful for if you look hard enough.

Good luck, CAREgiver.  Try to find something beautiful in each day, something you’re grateful for.