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.

 

 

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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.

Understanding, But Not Sharing, Despair

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

Review: “Miracles from Heaven”

Confession:  I dreaded going to this movie, and I thought I was going to hate it.  Maybe I wanted to hate it, but that was just a product of my own fear.  It was impossible to hate it.  Be warned, there will be spoilers in this review, but if you’ve seen the trailer, then you already know everything there is to know about it.  If you would like to see the trailer, here is the link.

The plot is as follows:  The Beam family are a normal, everyday, God-fearing, southern family.  You like them almost immediately.  Their middle child Annabel comes down with a mysterious, incurable chronic illness that is both difficult and painful.  They go to multiple doctors to get answers, and get nowhere for a really long time.  It tests their marriage and their financial security as well as their faith.  Finally, they find a doctor at Boston Children’s Hospital who can’t cure their daughter, but can give them hope both with his knowledge and his bedside manner.  After multiple trips back and forth from home to Boston,and  lengthy hospital stays, Annabel is still in terrible pain and not much more can be done for her, so they send her home. While she is home her older sister talks her into climbing a big dead tree with her on their property, and when the branch they are sitting on is about to give way, Annabell jumps to a hole in the tree, falls through the trunk all the way down thirty feet, and is unconscious.   Rescue teams recover her and she turns out to be fine.  Better than fine.  She turns out to be cured of her terminal illness.  She tells her parents while she was unconscious that she had an out-of-body experience, met God, and he told her that she was going to have to go back, that she was healed.  The doctors can’t explain it, she is asymptomatic and does not require medication.  It’s a miracle.

There are subplots that I don’t love, like when the good meaning church ladies come to the mother Christy and ask if it was her sin or the sin of her daughter is what is keeping her daughter from getting healed by God.  This causes Christy to stop going to church, and is in fact the exact opposite of what a church community, or any good community is supposed to do:  they are supposed to support each other during the hard times, and what could be harder than having a child with an indescribable, incurable illness?  Casting judgement about a person’s spiritual guilt is a beyond petty, it is downright cruel.

But some parts are right on.  Seeing both the pain of the child, and the pain of the parents was very real.  There was one part where the parent was asked to hold down the child so that the nurse could perform an uncomfortable procedure.  I can’t tell you the amount of times Michael and I had to hold Wendy down for blood draws and IVs, participating in the needed trauma that had to happen.  Also the part about the parents being frustrated with not being able to get answers, and being stopped by hospital policy.  I’ve addressed this in my blog post Courteous Vs. Helpful, where hospital staff can be advocates for the parent or just polite.  Compassion of the staff make all the difference.

Another part that was real was how a child’s illness effects everyone.  The child, of course, to whom these horrible things are happening, but also the rest of the family, their friends, their community.  Everyone gives something up.  In the movie, the father had to sell his motorcycle to pay bills. The older sister misses her tryouts for a soccer team.  They all give up pizza because Annabel can’t eat it.  Annabel’s medicine schedule, on a whiteboard calendar, sits front and center in the dining room, a constant reminder that their lives are not the same, but they stick together and they tough it out because that’s what families do:  they support each other, they love each other.

The most powerful message, however, comes at the end, once Annabel is healed and they return to church.  Christy delivers the sermon, and though she is grateful for the miraculous healing of her daughter, she tells the congregation that miracles are everywhere.  This is the important part.  Miracles are the actions that others perform to support the people in need.  The neighbor who watches the kids.  The waitress who befriends them while they are in Boston. The receptionist who fits them in to the schedule.  The doctor who gives them hope.

This is what I can’t stress enough, because when Wendy was at her sickest, we had a whole network of people both seen and unseen who helped us.  Whether it was taking care of our house, watering our plants, feeding our cats, offering us places to stay, sending us gifts, bringing us Thanksgiving dinner, praying for us, helping us to move, calling to check in, offering up their sick days, taking the time to come up to Boston and help, all of these things are  miracles worth celebrating.  Never underestimate what your small effort can do to help a person.

The name of the movie really should be “Miracles are Everywhere.”

Ultimately, the real shame is that Christy Beam realized it once her daughter was healed, and not before.

Bring tissues if you go to see it, and let me know what you think.

Here is a link to the real Beam family, from People Magazine.