The George Bailey Moment

If I could wish for you to have one moment in your life, it would be to be George Bailey at the end of “It’s a Wonderful Life.”

The movie goes like this.  George Bailey is an affable small town banker, he owns the Savings and Loan.  He doesn’t do anything particularly special in his life, not like his kid brother who saves a bunch of people during World War II.  No, George just plods along, a member of the community, a good, stand up guy.  Like when he saved his brother who fell through the frozen lake.  When he helped his boss Mr. Gower, a pharmacist, who filled the wrong prescription after hearing about the death of his son.  When he used his honeymoon money to fortify the bank during a run in the Great Depression.  By keeping his somewhat forgetful uncle on the payroll.

The movie still holds up as a classic.  There’s a good love story, where George marries Mary, the town librarian.  There’s a bad guy, named Mr. Potter, who personifies selfishness and greed.  All of this comes to a head, when Uncle Billy loses a whole bunch of money, and George has to figure out what to do.  Potter informs him he was worth more dead than alive, which leads George to contemplate suicide.  But an angel jumps in the water ahead of him, to save him, because George jumps in to save the angel.

Stop the presses.  An angel?  What?  Darcy, have you finally lost your senses?

Give me a moment.

The angel, named Clarence, grants George Bailey the ability to see what life would be without him for those he loves.  Predictably, it goes badly, it turns out George was needed for lots of reasons. It’s a Christmas story after all, showing that the small deeds that you do really add up to those around you, seen and unseen.  George decides to go back to his life, warts and all, and take the consequences of the lost money. Yet, he comes back to a houseful of neighbors who give him money to keep the Bailey Building and Loan afloat.

Really, to me, the story is about the power of community to bind together and support each other.  George is a member of the community and he takes it seriously.  And when he is in trouble or in need, the community binds together around him too.  That’s what community does.

When we moved to Vermont, I wasn’t really used to being in a community, for a variety of reasons.  Michael and I had moved around a lot in search of careers, and we hadn’t really settled down yet.  When we arrived in our small town in Vermont, and Wendy was just a year and a half old, we finally got to really meet our neighbors through playdates and pot lucks.  When Wendy got sick two years later, they really took care of us by mowing our lawn, shoveling our snow, raking our leaves, and feeding our cats.  When we got home there was a round of casseroles sent to us.  My work called me into an emergency meeting which was really a surprise birthday party.  Michael’s colleagues not only donated lots and lots of sick days so he could be with us in Massachusetts, but when we got back, they held a benefit to help us with the medical bills.

Years later, when we decided to move to Massachusetts to be closer to Wendy’s medical home, I really, truly, believed that we were never going to find a community as inclusive and loving as we had in Vermont.

And yet, we did.

We live in an amazing community in Massachusetts, filled with compassionate families whom we like to call friends. I was reminded of George Bailey because we recently had a bake sale, to help to raise money to get Wendy to the World Transplant Games in Spain next year.  I approached the soccer league to see if it was possible, and the President jumped through what seemed like a million hoops to make it work.  We had a week to pull one together, so I asked about a dozen friends if they would help me bake. Then this past Saturday we put out a table at rec soccer practice, with a jar for open donations.

The results were staggering.   Not only did everyone bake, but people were more than generous in their donations.  They kept saying, “Anything for Wendy,” and “She’s such a great kid, how could you not?”  It was a heartwarming day, not only because we made double what I anticipated we would make, but because it showed that we as a family, and Wendy in particular were loved and appreciated.

I want to say that we are lucky, because we are.

But to be fair, we do our fair share of contributions to the community as well. If a community is a garden, then it needs to be well tended to.  And I like to think that we tend to that garden in a meaningful way, through volunteering and carpools, potlucks, and fundraisers.  I’m just saying that community is a give and take endeavor.  You give what you can, you take when you need, and the people around you support you.

I hope that one day, everyone has the “Wonderful Life” moment where they feel supported by the community that they have given so much to over the years.

If you haven’t seen the movie I would recommend it.  It’s regularly on the top 100 lists of all time great movies.  Jimmy Stewart and Donna Reed are incomparable.  And make sure you watch it in the original black and white.  I don’t think I’m spoiling anything when I say that it’s a happy ending, and Clarence leaves a note for George written in a copy of “Tom Sawyer.”

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Making Decisions from Facts, Not Fear

It’s so easy to say no when confronted with fear.  You know that feeling when confronted, the tightening of the gut, the quick intake of breath, then holding it for longer than you should.  It’s so easy in that moment to answer whatever question was just asked with a simple, “No.”

But Michael and I decided a long time ago that we would try very hard not to do that when Wendy wanted to try something new.  That telling her no without a good reason, only that we were afraid for her, would make her fearful as well.  So we endeavored, both of us, to sift through the facts of the situation and figure out if the question was possible.

And Wendy, for her whole life, has always pushed the boundaries of what was possible.  So we have been pushed too.

Here is the latest example:  Wendy comes home saying she wants to join the Cross Country team. You know, running long distances, away from adults, sometimes in rather remote areas,  as a diabetic, with high blood pressure.  This, while I’m not there, away at work, relying on others to monitor her medical conditions.

I want to keep her safe, but she’s twelve.  She wants the independence, and I get it, but the possibilities of all the things that could go really badly is a list that lies directly behind my eyes.  I find that I press the bridge of my nose between my eyes when these questions come asking myself, “How are we going to figure this out?”

We start with the schedules. We buy new running shoes. Then we fill out the forms.  We realize after filling out the medical history, medications, and allergy sections that perhaps we are going to totally freak out the coach and maybe we should contact her.  So I write her an email:

Hi Coach K,

My name is Darcy Daniels and I ‘m the mom of Wendy Wooden.  She is joining your cross country team this year, and we are all very excited about it.  She loves to run, and she’s pretty good at it.

She already plays soccer, swims competitively, and races in triathlons.

However, there are a couple of things you should know about her medically.  She had an illness at a young child that left her with kidney failure and a type 1 diabetic.  She had a kidney transplant at the age of 5, and is on immune suppression drugs.  She’s also on some blood pressure meds, but her blood pressure is in really good control.  Finally, she has an insulin pump that she usually turns off before she races.

She is very good at knowing her body, but she needs to have her water bottle on hand, and she will need to have a runner’s belt on with fruit snacks in them, in case her sugar is low.

I’ve included the school nurse in on this email, who I’m sure can fill you in.  My next email will be to the principal to make sure that there is nursing care for after school activities.

Also, my husband and I are always happy to answer questions.  My cell is xxxx.  Michael’s Cell is xxxx.

Please contact us with your concerns.

Thanks so much.

Sincerely,

Darcy Daniels

Can you imagine being a coach and getting an email like this?  Her response was great, just four short sentences:

Thanks for letting me know.  I’m excited she’s joining the team.   I’ll keep an extra eye out on her.  Let me know if you don’t hear back from the principal or the school nurse and I will contact them.

Next, multiple calls to the school nurse about getting after school coverage.  There is the normal school nurse, the after school nurse, and the travelling nurse who will go on away track meets.  I learn that the coach meets with them on her own (RELIEF!)   I learn that they all sit down and meet with Wendy (AGAIN, RELIEF!) I talk to everybody, and we come up with a plan.

The plan fails miserably the first time and Wendy ends up low and in the Nurse’s office.

More phone calls.  More meetings.

We come up with a second plan.   So far, it’s working.  It’s nice to know that not only is Wendy’s medical needs being taken seriously, but so is Wendy herself.  She is a part of making the plan, she is being empowered to make decisions, check them, and change them, with her new medical team.  Honestly, this is all a parent of a chronically ill child could want.

Onto the next problem:  she doesn’t want to wear the lap belt, a typical runner’s belt, because it seems to embarrassing to her. Typical seventh grader, she doesn’t want to be different in any way.  I spoke to the nurse about it and  I’ve found a set of running pants that have pockets built in so she can carry what she needs without having to have the belt.

Crisis averted, for now.

How much easier would saying NO have been?  Good Lord, it would have saved a lot of time and money.  But this is something Wendy really wanted to do.  When I picked her up the first day, I asked her how it was, and she beamed and said, Better than Great.

High praise from a 7th grader, I’ll take it.

Forgive to Begin

When you forgive, you in no way change the past – but you sure do change the future. ~Bernard Meltzer

I was recently at a gathering of parents who had chronically ill kids.  I was surprised to see that so many of them had not emotionally moved beyond the original diagnoses of their children.  In other words, they are still living in their worst day.  Many of them were depressed, anxious, and overwhelmed.  It struck me because I recognized the feelings that they were talking about, but I didn’t share them.  Rather, I didn’t carry them with me anymore.

The first thing I realized is that the other parents that I’m speaking of still carried a lot of anger and resentment, which I totally get.  Your kid is sick and there’s not much that can be changed.  You have to learn a whole new medical language, interact with strangers who are now telling you how to take care of  your child, and let’s not forget the most important part: your child is sick, possibly in pain, definitely scared.

I remember when Wendy was in the PICU and was super sick.  She was unconscious, and there wasn’t much I could do except just be there.  My family had gathered, both my parents and Michael’s dad, and we  took turns at the bedside, waiting for information from the teams of doctors that would come in and give us updates.   Michael had brought a legal pad, so we would write down the doctors’ names, their specialty, what they said, and what next steps were.  We listened in on rounds two times a day.  We waited and we worried and we tried to be kind to one another.  But five people in a room with a hospital bed was just too many, and so we had to take shifts.

So I would walk around the hospital, the inside and then the outside.  I would walk up and down the streets.  I would sit in the grass in front of the Bullfinch Building, where the first surgery was performed with anesthesia, giving the golden dome the name the “Ether Dome”.  I would walk over to the Charles River and watch the Duck Boats.

One of the places I went every day was the chapel at the hospital.  It’s this gorgeous little chapel, with back-lit stained glass, an altar, a series of chairs and a few kneelers.  I’m not an especially religious person; I believe that there are multiple paths to enlightenment and I believe in the power of prayer.

So every day I would go to pray.

chaple

At some point, I realized that I didn’t have the emotional space to deal with the horror that was happening.  And as I sat there praying, I thought about what I needed to do to create the emotional space needed.  The answer came to me:  I needed to start forgiving people from long ago hurts.  Imagine, I thought, if it’s that easy.  So I started, I forgave middle school slights, I forgave high school fights.  I forgave boyfriends who cheated, and the girls they cheated with.  I forgave family members and misunderstandings.  I forgave friends and the arguments we had in parking lots.  I spent many days, a few minutes at a time, forgiving all of the hurts I was carrying around,  all this time, for no good reason.

How did I do this? i would just think of something that hurt me and say, “I forgive ________ for  _______.  I release that hurt.”

I know it sounds crazy, but it worked.  I could feel myself lightening, with each little  hurt forgiven.  It didn’t fix everything, but it gave me room in my emotional space to start to deal with the situation around me.

I came to do a lot of reading on forgiveness, and it turns out that all of the major religions of the world use self-reflection and forgiveness as cornerstones of their daily practice.

Think about all the minor hurts we all hold inside of us, and imagine if we could slowly let them go? How much greater would we all feel?  This may sound cliche, but forgiving is easier to do the more you do it.  I’ve written about When People Say Stupid Things in the past and I’ve said that the first thing I do is forgive them, because their motives were good, but their delivery was flawed.  I am not certain if I could have done that in the beginning of my journey with Wendy’s illness.

Perhaps the hardest person to forgive is yourself and will take more time than just a sentence.  I’ve realized that a lot of other parents carry tremendous guilt with them about their child’s illness, even when the illness was inevitable.  They feel guilty that they didn’t see the symptoms soon enough. Or they worry that they did something while pregnant that caused the illness.  Or that they could have done something different.  When they tell their child’s story, you can feel the guilt like a sharp knife piercing them, so fresh even after many years.

To these parents I say:  You did the best with what you knew at the time.  We all can’t know everything.  Stop beating yourself up about it.  Forgive yourself and release that hurt.

It’s not easy, but it’s worth it.

It’s the first path to healing.

Photo:  The chapel at Massachusetts General Hospital.

 

 

That Time We Did StoryCorps

I had this silly idea: Wendy and I should do StoryCorps!!!  It is the NPR and National Archive Project that allows for loved ones to interview each other on any topic they choose.  Some are chosen for the Friday morning slot on NPR, and all of them have the opportunity to be housed in the National Archives.  As a historian, I love this for a number of reasons.  Wendy and I would have our voices in the National Archives.  She could take her grand kids to hear it someday.  And, if you had the chance to hear your grandmother’s voice again, wouldn’t you take it?

I also thought it would be a good chance for us to connect and talk about her illness…..You know, the thing she’s been living with for the past nine years.  We often talk around the subject, or it’s a part of our lives like the furniture, but we don’t often just open it up and examine it.

I knew we were going to be in Vermont during the last weekend of August, after Camp Sunshine, to see my father in a dinner theater/murder mystery/town library fundraiser that was being held in the North East Kingdom.  For those of you who don’t know, the North East Kingdom is the northeastern region of Vermont, which has its own eccentricities, a thicker than usual Vermont accent, and a distinct mix of French Canadian customs.  My parents live a few miles from the Canada border. I love it there for all of the above reasons and many, many more.

The thing about StoryCorps is that you need to register ahead of time and put down a deposit, which I did.  I chose a time the day after my father’s event in Burlington, Vermont.  When I did, I wrote to Wendy, who was away at Diabetes Camp, to tell her.  She misread the email from me and kept calling it “StoryCrops” instead.

So here I had this opportunity that I didn’t want to waste, and I wondered what we would talk about.  I didn’t want it to just be about her illness, I also wanted it to be about her resilience, how the illness is just a part of her, not the whole her.

As per the StoryCorps website, we wrote down our questions ahead of time.  We agreed that we would ask each other three questions, with follow ups.  My questions were:

  1.  What do you already know about your illness?
  2. How often do you think about your illness?
  3. What do you want people to know about you when they meet you now?

Wendy had written down her questions, and she shared them with me too.  Her questions were:

  1.  How was I different between when I was born and when I went into the hospital for my kidney transplant?
  2. What was it like for you guys while I was in the hospital?
  3. Will I ever be able to do normal things like other kids?

It was at that moment I knew that I was going to need a box of tissues to get through this interview.

The morning of the interview came, beautiful in the Northeast Kingdom, the leaves just starting to turn, the blueberries and blackberries just about finished for the season.  We left my parents’ house early because it was about a two hour drive to get to Burlington.  We parked right at the parking lot by the ECHO science center, right on Lake Champlain, with the ferry docks just before us.  The little StoryCorps airstream camper was waiting there for us, but we grabbed lunch first, walking up to Church Street, a cobblestoned pedestrian zone, complete with graffiti that still celebrates Bernie Sander’s magnificent, iconic hair.  We ate ramen and wondered if it was going to rain.  I was nervous and I could tell Wendy was too.  We both have a way of growing sullen before we’re about to do something that stretches us.  We’re not fun to be around, but Michael and Penny continued on like nothing was the matter, making their own plans for what they were going to do while we were recording, mostly going to the lake and playing Pokemon Go.

Wendy and I had paperwork to fill in.  I did most of it, having her sign at the end.  We arranged our questions, and when the moderator came to get us, we were ready.

The mobile sound studio was basically a fast food booth with two good microphones.  Wendy and I sat at either end and got ready.

And you know what?  It was really good.  We had a good conversation, a conversation I want to be recorded, one I want her to remember.  We talked about her illness, and her resilience.  I answered her questions as best I could.  I only cried twice.

It was odd, some of the things I told her, that I had never told her before.  I told her that she coded, and then asked her if she knew what that meant, and then I had to describe it.   “It’s when your heart stops.”  I told her about the boy who lost his life and she now has his kidney.  I told her some good stories and some sad stories.  I am proud to say that I held it mostly together.

We were given a CD of it when we left.  I think I’m going to put it in our safety deposit box.

I’ve included the interview here in case anyone wants to listen to it.  It’s roughly thirty minutes long, and it’s uncut.  It’s more like a podcast, really, something to listen to while you are driving or doing other things.  I could only convert it to a YouTube Video, so it just has the picture from the top of this blog post and the audio playing along with it.

https://www.youtube.com/watch?v=h7SGQCIpvxc

But I really do love the richness of it.  And I’m so glad that we did it.

I’m not sure how Wendy feels about it, or will feel about it in the future.  She was glad it was done and that we went for Maple Creemees afterward (another Vermont tradition.)

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If nothing else, it’s something that will always be there for her, even when I’m not.