Our Kids Inspire Us

Often times, it’s our kids who inspire us.

They don’t know that they’re supposed to feel bad for themselves.  They just want to feel better so they can get back to being kids.  They bounce back quicker, not just because they are young, but because they want to move forward, they want to get past their illness.

They don’t dwell.

Even if they’ve had a crappy day, a day filled with pain and anxiety, with pokes and prods and tests and sticks, even after surgeries, or chemotherapy, or dialysis, or injury, they go to sleep and the next day they re-evaluate.  If they are better, even just a little bit, you can tell because their eyes are clearer, their smiles are wider, they want to do more things.    We as parents help them celebrate small victories, marking their progress the way we mark their height in tiny increments on the kitchen wall.  We are their cheerleaders, and they are our heroes.

SickKids in Toronto has launched a new ad campaign called “VS.” It’s a moving video showing sick kids versus their illnesses. It shows kids as knights, or prize fighters, or motorcyclists, or professional wrestlers.  It shows them beating the odds.  It is powerful because it manages to show you the steep hill they are climbing with these illnesses in a short amount of time.

Watch it here.  Have tissues ready.

The picture I’ve posted above is of Wendy.  Here, she is four years old.  She had spent over 100 days in the hospital, she was taking 14 medications in different combinations, every two hours.  She was on five blood pressure medications, and she was getting up to eight shots a day of insulin. You might not recognize her because she had chubby cheeks because she was in kidney failure and one of her medications made her grow extra hair all over her body.   But just look at that smile.  That’s a kid who still played on the playground, climbed up trees, swam in the pool.

We just worked the medical stuff around her.

The other night Wendy and I were lucky enough to be invited to an event for the hospital, called the Storybook Ball.  At it, there were many people who had heard of her video and came up to her, both to tell her that they had cared for her as a patient, and that they were inspired by her video.  It couldn’t have been possible without the Architectural Firm Payette, who led the way through the whole cartoon.  They utilized all of their extra talents, the ones they don’t use every day, to create this video.  Wendy inspired them, and they created an inspirational work.

They have written about the video from their perspective, and you can read that on their website.  It is fair to say that it is impossible to thank them enough.

One of the sweetest moments since the release of the video last week, was a short email from an Emergency Room Attending Physician.  She wrote to say that she was already using it with her patients when they arrived and that it seemed to be entertaining and calming to them.

It’s so amazing to know that after all that time, after all that work, that it’s going to make a difference in the life of kids who are in pain.  It’s actually working.

This kid inspires.  Lots of kids inspire.  They teach us to keep moving forward.

I’m going to end this rather short post with one of my favorite quotes, one that reminds me of lots of kids like Wendy, lots of Brave Fragile Warriors:

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
Mary Anne Radmacher

 

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Pattern of Acceptance

Once you get a diagnosis, how do you get to the point where you’ve accepted what’s happening to you, your child, your family, your life?

You may have heard of the Kubler-Ross model of grief.  At first it was applied to death and dying, but it has been spread out to many different kinds of grief.  You probably read about it in your psychology college textbook, because it’s not new.  I ran across it when Wendy was in the hospital and I realized that I was mourning our old life, the life before Wendy got sick, so I did some searching and rediscovered the Kubler-Ross model.  I am by no means a psychologist, but this helped me to get some perspective on our situation with a new diagnosis and a child that was never going to be the same again.  It’s a scary time, and your feelings and emotions run the whole gamut.  Sometimes I still check in to see where I am on the continuum.

But now, I like to think of it more as a pattern of acceptance than stages of grief.

Denial:  The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.  I remember thinking not that the doctors were wrong in everything they were telling me in the “Room of Doom” in the PICU, but I remember thinking that they must be exaggerating.  They weren’t.  I hoped that once we got home Wendy would improve.  She didn’t.  I remember the night I realized that she wasn’t going to get better.  She just wasn’t.

Anger:   This is often accompanied by guilt.   “Why me? Why her?  What did we do to deserve this?”  I remember walking up and down the streets of Beacon Hill being jealous of families that were enjoying the summer.  There was a woman who was yelling at her child by the “Make Way for Ducklings” statues because he had gotten his hands dirty from his ice cream cone and it was all I could do to tell her to get over it, enjoy this moment, because your kid could be in the hospital right now.  Thankfully I kept my mouth shut.

Bargaining:  This is a hard one.  It involves the hope that we can somehow avoid this outcome.   I could understand why people go to the ends of the earth to find a miracle cure for their child.   People facing less serious trauma can bargain or seek compromise.  Sometimes it works.  My father said if Wendy survived that he would quit smoking.  You get the idea.  It’s trying to find what you can do to change the situation.

Depression:  This stage can last a long, long time, and some people argue that in part of this stage, Anger comes back.  Everything feels hopeless and you feel rudderless.  All of your expectations and plans have to either be put on hold or moderated. You wonder how it can all be so hard, and why it’s so unfair, especially for your child.  You might want to find a counselor to talk through your feelings.  It’s really hard for a long time, and then at some point you realize it’s not quite as hard, and you slowly move toward the next stage.

Acceptance:  “We’ve got this”.  This is the idea of doing the best you can with what you’ve got.  Gratitude sets in and you might find yourself being happy and being surprised at the happiness. You realize that life is moving on and you’re moving on with it.

I think, though, that for parents of chronically ill kids, that there can often be another stage:

Empowerment:  This is the stage where both you and your child take the hand you’ve been dealt and play it.  When you join advocacy groups, when you allow you child to re-join sports or after school activities or when you begin to travel again.  When you do the things you love even with the obstacle, even when it’s not exactly the same. You may be a mentor to other parents of chronically ill kids, or you may write or speak to groups.  Or you might not.  Just doing the best you can is enough, and it’s inspiring to others.

Other members of your family will find acceptance at different rates.  For us, one family member stayed longer in anger, one stayed longer in bargaining.  It’s totally an individual journey, and it’s important to realize that we don’t all come to the same understanding at the same time.  It takes a really long time to be ok with your life not being what you expected, and a new normal grows and takes hold, along with real, genuine happiness and gratitude.

The other thing that I want to say is that in this continuum, you might be knocked backward into other stages or have to start all over again with a new diagnosis.  We’ve been dealing with some new symptoms for Wendy and I’ve lately been keenly aware that we might be starting this cycle all over again, but that’s OK, we’ve done it before and we will do it again.  But that won’t mean it’s not difficult, or heart breaking, or painful or nerve-wracking, it just is.

Finally….when Kubler-Ross was interviewed years later, she said that she regretted putting the stages of grief into concrete categories, because while these are common stages, they aren’t definitive.  Where is room for confusion?  For frustration?  For complications?  For disillusionment?  These things that you feel, they are normal to feel.  Being aware about them, being in touch with your feelings and being able to both experience them and express them, will hopefully help you to heal.  Be gentle with others who are on this path with you.

Empathy goes a long way in the healing process.

Picture:  A winding road in Tuscany, leading to Montalcino.

 

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Courteous Vs. Helpful

Wendy and I have spent a lot of time in various doctors’ offices lately, and I’ve been reminded that there is a right way and a wrong way to treat a young patient and her family.

Here’s an example of a doctor’s visit that didn’t go so well last week.  It started late in the afternoon, after school.  The doctor was new to us, arrived fifteen minutes after we were in the exam room, did not introduce herself, nor called me anything but Mom.  She did not address Wendy by her name once.  We were there because Wendy had hurt her knee, but the doctor asked a lot of questions about her medical history.  It bordered on nosy.  Granted, Wendy’s medical history is chock full, and I understand that there are a lot of questions, but not necessarily for a hurt knee, other than the fact that she can’t take NSAIDs like ibuprofen because it is bad for her kidney. The doctor also commented on her bifocals as unusual, again nothing to do with Wendy’s knee.  As we left (and thank God that Wendy was out of the room already) she said to me, “Don’t worry mom, she has to do SOMETHING the normal way.  Maybe her knee will be it.”

Unhelpful comment, doctor.  It is not your place to editorialize my daughter and her medical history.  It’s your job to tell us what to do about her knee. Meet us where we are in this moment.

Today we had a totally different experience.  We saw a doctor who has been following Wendy since the beginning of her illness, almost since the first day of it.  First, she saw us downstairs in line waiting for coffee and paid for our order. Then she met us upstairs, where we addressed concerns I had about medication and blood pressure.  She had the nurse come in both to say hello and to confirm medications and prescriptions.  She ordered labs, and though it was a new computer system, made sure that it was working, printing out the labs herself after the front desk couldn’t find them in the new system.  She looked at Wendy’s ultrasound, told us what it said, and we arranged for a meeting in a month.  She wished Wendy happy birthday, and we left.

Granted, this second doctor has known us for a long time, and we have a very special relationship with her, but that doesn’t mean that the first encounter with the first doctor was what we should be willing to accept as care for a child.  For the sake of argument, let’s say it is the difference between being courteous and being helpful, and it applies to everyone from the doctor to the receptionist at the front desk.

Being courteous is answering questions directly, but not necessarily providing any solutions for the patient or parent.  Being helpful is when you team with the parent, even momentarily, so that you can come up with a solution to the problem at hand, so that the parent doesn’t feel like they’ve been hung out to dry.  Being courteous is saying that your patient needs a test and it’s in Building Such and Such.  Being helpful is showing the parent how to get there, why it needs to be done, and what the results will mean.

Let’s face it, families are rarely in the doctors’ office because something good is happening. Therefore, the parent is often stressed.  The child is either sick or in pain, and additionally he or she can pick up on the parent’s distress.  Add to the mixture the traffic getting in, finding a parking spot, the possibility of getting bad news,  any new information that might be thrown at the parent, and there’s an overwhelming sense of doom in the waiting room.  No one is there because they want to be.

So it’s important to treat these families better, then say, someone who is ordering a double-tall-skinny-latte at the drive up window at Starbucks.  “I’m sorry, I can’t help you with that,” rings a little hollow when you have a sick kid in tow, knowing that tests will be ordered, waiting for bad news, in a room that (let’s face it) could be a little more child friendly.

The difference is compassion.  Compassion is the key to a successful trip to the doctor.

Compassion is the empathetic concern for the misfortunes of others, accompanied by the desire to help to alleviate that suffering.

Most people get into the health care business because they are compassionate people who want to make a difference in the world. They have bad days too, and hey, they’re human.  When you encounter a whole office that is merely courteous, however, then you know that something is wrong. Sometimes the system has beaten compassion out of them with deadlines to see so many patients per day, etc.  So for the sake of argument,  let’s go through some of the things that make a health care professional helpful.

Dear Health Care Provider:

Please read the chart before you walk in the door.

Please learn my name and don’t just call me “Mom.”  If it’s possible, learn if my child has a nickname.

Please tell me who you are and what you job is, and how you can help us.

Please listen to my concerns.

Please listen to my child and talk to her like she is a full partner in this process, because she is.

Please explain what the next steps are and what your concerns are; tell me why we are doing what we are doing.

Please follow up as promptly as you can with information on tests.

Additionally, the truth is that it’s the little moments, those little compassionate moments, that we remember in health care.  We remember when the doctor gets on the floor to play with our kid, we remember when they sing a song together.  We remember when the nurse looks for samples so you don’t have to immediately go to the pharmacy.

We remember when the doctor tells us bad news and holds our hand.

Ask any parent of a chronically ill kid about a compassionate moment that a health care provider showed, and they will be able to give you ten, because those are the moments that we WANT to remember.  It provides dignity and humanity to an already suffering population.

It is the compassion that binds us together, and it’s better for the bottom line. People who feel that they are valued come back.  The Schwartz Center for Compassionate Care in Boston has tried to measure compassion.  In this article, they show that hospitals that recruit candidates with compassion, train how to be more compassionate, and reward those members who show true compassion have better retention rates, and fewer return visits to the Emergency Department.

Compassionate Care makes a stressful situation better.

What if you’re not encountering helpfulness and compassion?  Some things I do as a parent include introducing myself to everyone in the room:  Doctors, nurses, medical students, you name it.  I introduce my daughter.  I give a brief history if the doctor hasn’t done so to everyone in the room.

If I am not getting the answers I want, I say so, sometimes not so nicely.  I have been known to say, “If I ask you a thousand questions you need to answer them, because I’m the mom” (Please note, this perhaps wasn’t my finest moment.)

If I’m nervous, I write down my concerns ahead of time to make sure we get to them.

I ask why questions.  “Why are we doing this test?  Why do  you think that?”

I thank the health care provider and try to name the thing they’ve done.  Every time. I make Wendy do it too. “Thank the Phlebotomist for the blood draw.”

I’ve also written complaints when something has gone seriously wrong with patient care.

My daughter is more than a diagnosis, she’s a person.  The health care system can’t just treat her, they have to treat the whole family.  It’s just the way it is.  We are a package deal.

If you are a health care provider, please consisder be more compassionate, more helpful, and not just courteous.  Just being courteous won’t get you anywhere.

Rather, it will encourage me to find a better experience for my daughter and my family.