Taking a Transplant to School!

Dear School Nurse:

My child has a transplanted organ.  Here is what I would like you to know.

My child can get sick faster and harder than most other kids.  As you know, schools can be a giant petri dish of germs, and the best way to discourage their spread is by careful hand washing.  Please make time to discuss with the class where my daughter is about what careful hand washing looks like.  Please have the teacher commit to taking time before lunch to have each child clean their hands, either with soap and water, or with a quick spurt of hand sanitizer as they walk out the door.  Discouraging the sharing of food would be good too.

Then, please write a letter home to parents, asking them to err on the side of caution when sending their sick kids to school.  Most parents, when they know that sending their borderline contagious kid might send my child to the hospital, will be  more likely to think twice about doing so.  If you mention that you’d be happy to talk to them on the phone to help them decide, they may or may not take you up on it.  I know it’s some extra work for you, but it will probably keep the school healthier as a whole.

Offer to go into the class to talk about organ transplantation.  Ask my child how much she wants her classmates to know.  Some kids want to share everything, some kids are afraid.  But it’s been my experience that the sooner you talk about it, the faster it becomes normalized.  My child might not be able to do some sports, like contact sports that involve getting hit in the abdomen, and it’s good to have these discussions in the beginning, so my child can say, “It’s because of my kidney,” if other kids ask.

Because my child is likely to get sick and hospitalized, please help me to set up a 504 as quickly as possible, so that if she is out for more than 5 days in a row, she can get tutoring services, and if she misses a lot of school, I don’t want her to be left back a grade.

This is a lot to ask in the beginning of the school year, and I know that you have a lot to do.  But if you help to do these things early, it will make the school year go much smoother.  I like to think of us as a team to keep my  daughter as healthy as possible.  We sort of have “joint custody” over her body–I have her on nights and weekends, and you have her days.  Please take care of her.  I worry about her all the time, and I want to be able to trust you.

And please, please, please, call me if you have any questions or problems.  I want to hear from you.  I want to work this out together.

Thank you so much for taking the time to listen to me.

Sincerely,

Darcy Daniels

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.

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:

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:

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.

 

 

We Cannot Lose Hope

I have been watching the world this week, and despair has begun to creep in. I remember this feeling, when Wendy was super sick, this feeling that it was all so overwhelming, that I didn’t know what to do, or where to begin.  It is a feeling of paralysis, like an elephant is sitting on your chest.  It is not knowing where to begin, and fearing you never will.

But the one thing I have learned in the ten years of being the mom of a chronically ill kid, it’s that the only thing you can’t lose is hope.

What is hope?

Hope is looking at the situation for what it is, but realizing that there is still room to make it better.  Hope is taking stock of reality and moving forward.  Hope is keeping the belief alive in your heart that there is still possibility.

Possibility.

Like love, hope is a noun and a verb, which makes it special.  You hope things will improve.  You hold hope in your  heart.  You get the idea.

When Wendy was in the PICU, hope was that she would go to the floor.  When she was on the floor, hope was that she would get released.  When we were home, hope was that she would improve.  When she improved, hope was that she thrived.

I did not lose hope.  It was always in a special place in my heart.  It’s still there.

The events of Charlottesville were a shock.  To see such hatred opened a dark space in our national consciousness, one we previously wished to not see.  There are other demonstrations across the nation tomorrow, and it is possible that they will end in violence.  People I had previously thought to be good and decent have taken the side of hatred, have rationalized it, have tried to shrug it off.  I stand in disbelief that we continue to have the problems of racism, antisemitism, sexism, Islamophobia, and xenophobia in 2017.   It’s like I’m waking up to a nightmare every day to see citizens of the United States openly fly the Nazi flag from their front porches.

I have thought about taking my girls to a rally tomorrow, because I want them to see that it’s important, to stand up to hatred.  But the Boston police have just issued warnings, to wear helmets and goggles, to bring masks.  That’s not peaceful protest, that’s preparing for war.  And I’m scared that I won’t be able to protect them if things go wrong.

But I still hold hope, and I have learned that hope can exist in small spaces and small actions.

And so we will make signs and we will post them outside.  We will create a flag.  We will talk about racism.  We will hope for a better tomorrow, a better September, a better 2018.

We cannot lose hope.

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.