Sit With Me in the Dark

Have you ever wondered what to say or what to do when someone you love or know has a child with a special need or is fighting for their lives with a life-threatening disease?   You fear to say the wrong thing so you say nothing at all. Often, in fact, you distance yourself from them because of the awkwardness you feel.  Well, let me share something that may help you.

“There is nothing that you could say that would take their pain away.  BIG BREATH IN.  This is not your responsibility nor is it in your ability to do so.”

This is a quote from a blog written by a woman whose child has the same disease that David had, Batten Disease.  Her encouragement is to simply learn how to sit in the dark with them.  Speak words of grace and love and encouragement.    These words, while sitting quietly in the darkness will bring life to your friend.  Today I want to simply share the blog Katie Wharton wrote.  It is short yet powerful!  You will be empowered to be a better friend to those around you who desperately need you.  If you are the parent of a child with a special need or medically challenged this would be a great blog to share with your family and friends.

Here is a link to her blog:

I am also going to include her blog here:

In my current season of life, I am attempting to navigate a world filled with medications I can barely pronounce, feeding tube and oxygen alarms beeping, and hospice nurse visits weekly for my 3 year old son.  On my best days, my world can still be quite dark.  It’s not a fun story to tell.  I have often caught myself sharing too much information to people, only to make them speechless and uncomfortable.  And I get it.  Before this experience, I likely would have had the same response.  But what do I need most in this life experience?

I need you to sit with me in the dark.

I can only imagine how tough this is to do.  We are equipped to stay as far away from pain as humanly possible.  But that’s the thing, there is no hiding from it.  We will all experience different levels of pain during different seasons of our life.  So we need to sit, and we need to hear, we need to read, we need to walk our journeys together because “grief shared is halved, and joy shared is doubled”.  We need to do life together.

I think one of the biggest challenges we face when we “sit with someone in the dark” is that we don’t know what to say to the person experiencing pain.  But I will let you in on a little secret.  Are you ready for it? There is nothing that you could say that would take my pain away.  BIG BREATH IN.  This is not your responsibility nor is it in your ability to do so.  The only words that could remove my pain would be “your son is no longer sick”.  Since these words cannot be spoken, please give yourself some grace in knowing that your words will NEVER fall short.  Your good wishes, messages of support, acts of love are completely covered in grace and speak directly to our hearts.  In many ways they lessen some burden by strengthening our joy. But if you are worrying about saying “the right thing”, please don’t hold yourself responsible.  Instead, sit in the dark with your loved one.  Listen to what they have to say by listening to hear, instead of listening to respond.

When we allow ourselves to do this, we join the journey.  We allow the story to make an impact in our lives.  We make purpose out of pain.  I am constantly humbled and amazed by how natural this has been for many of you.

Thankful for each one of you.  Thanks for sitting with me in the dark.