The Door

thedoor

I’m sure before you had a child that was born with a critical illness, you knew of your local Children’s Hospital, but you didn’t really know about it.  You’ve probably said to yourself, “I’m glad we have it, I just hope we never have to use it.”  For you that wish didn’t come true and ushered in a reality that you never expected.

Like all of us, you’ve made many trips to and from these hospitals and walked through the same set of doors over and over: rain or shine, sleet or snow, holiday or humdrum Wednesday.  As we left our – hopefully – last surgery with Nolan, I started to really think on the significance of the front door of the hospital.

The Door can lead to our greatest fears, but also our greatest hope.  There have been way too many times where I’ve had to walk from the parking garage to these doors, and every step closer makes me more scared and more nervous.  Because on the other side of The Door is something scary for my son, something unknown, something painful, but something necessary.  But also on the other side of those doors is a team of people who have the professional training to give your kid a shot at a full life.  This door also leads the way back home…it says “we made it.”  The Door leads to thanksgiving…to joy…to peace.

The Door also leads to suffering. And before you think I’m getting too heavy, just let me say that I believe we don’t talk about suffering enough when it comes to healthcare.  Because it makes us uncomfortable and carries a negative connotation.  But like it or not, this is the reality of what occurs every single day at a hospital: innocent kids given a diagnosis they don’t deserve, losing time on a childhood that should be free of pain and fear.  There are parents who walk through those doors everyday consumed with thoughts like: is he going to make it? How am I going to pay for this? How long? How much more can I do? What about work? And on and on and on.  They suffer, too.

Healthcare workers: you have such a power within your hands to impact suffering.  Sure, if my son hurts you give him something for it.  If I’m cold, you give me a blanket.  That’s what’s considered inherent suffering.  It’s tied to the thing we’re here for.  But what else?  There’s another type of suffering called avoidable suffering and preventing/reducing this takes a lot of effort and isn’t something you learned in school.  What does this look like?  It’s the worker(s) that walk past the lost parents in the hallway, because “I’m too busy right now.”  It’s the worker that doesn’t make eye contact.  It’s the one who talks down to people.  It’s the one who won’t realize that the hospital isn’t quite home for a sick kid, and won’t go beyond the scope of their job description to make that better.  It’s the worker who operates off of a checklist instead of a heartbeat.  It’s the one who sees a parent as “pushy” or “snappy” without realizing that we…are…suffering.  Once you realize that and try to put yourself in our shoes, it will drastically change the way healthcare is delivered.  Because human connection and empathy are a powerful way to help heal.  I know you didn’t get into healthcare for checklists, productivity reports, and to spend half the day scouring the building for the last working med pump.  When you empathize and see suffering for what it is, you will reconnect with the reason you got into this business.

What about those who walk back out the doors and re-enter their lives?  To friends and family: you play a crucial part in alleviating suffering, too!  Please realize that while the surgery was a success, and the prognosis is good, we’re going back into a world that’s forever changed.  There might be medications to give, multiple appointments, tube feeds, endless stops at the pharmacy, loss of work, increase in stress, and a new schedule that basically says we can’t hang out like we used to.  We want nothing more than to go back to that, but this is our new reality.  And it’s really, really hard sometimes.  And we need you.  Don’t stop inviting us to stuff: one day we’ll surprise you and say yes.  Don’t stop asking how you can help, even if you don’t know what you’re doing.  Realize that while we might wear a smile, it’s not always that way in our minds.  We’re always going to worry about the future, that’s just how it is.  So text your friend, send a card, cook them a meal…just let them know they’re loved.  And try to understand what it would be like for you if the rug was suddenly pulled out from under you and you’re left to put it back together.  And I also can’t let this paragraph end without saying that unfortunately there are people who walk through The Door empty-handed forever.  I cannot imagine the pain these families face. Please be there with love and patience and kindness.  If it was you, you’d want the same.

The Door is a place of great heaviness, but there are things we can all do for those who are currently standing at The Door.  If we realize they have fears and are suffering, we can surely do things – through compassion and empathy – to give them the power of hope and joy.  They can walk into the hospital knowing they’ll be treated like family.  And they’ll walk out knowing they are truly loved.

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on September 28, 2016, in life and tagged , , , , , , , . Bookmark the permalink. 4 Comments.

  1. Another great post, Chris. Thanks for sharing. 🙂

  2. Caroline friedly

    So true. Thank you. X

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