Oct 18

Oct 18 The dark

One of the very first condolence notes I received was from my friend, mentor and founder of CURE, Susan Axelrod. She said, “When my brother died in 1957 all the condolence notes my family received started with ‘words cannot express…’. Nothing has changed since then.” She was right, of course, there are no words now, nor will there ever be. For over a year I have used this blog, my words, as a way to connect with others and to spread awareness, but it's also been a therapeutic outlet for me. So, I’m giving myself a pass this week and acknowledging that there is nothing I can say on this page that is going to make any of this better. I know in time I may feel a sense of conflicting relief but right now its just a gaping hole of grief. No amount of flowers, food, alcohol or words can fill it and to be entirely honest, right now I don’t want them to.

I’ve been spending a lot of time in Adelaide’s room these last few days. It’s small and contained and there is nowhere in the world that I feel closer to her. I don’t do much other than lay in her bed, think of her and work through a Costco pallet’s worth of Kleenex. While sitting here, in the emotional dark, I was reminded of the words of another warrior mama to which I had been connected via social media. Her son, Seth, also has a neurodegenerative disorder and she writes her own well-written blog. Many of her posts hit home but there is one in particular that I keep coming back to. I don’t have the strength to find my own words right now so, with Seth’s mama’s permission, I am sharing hers.

“Sit With Me in the Dark”

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.

By Seth’s Mama from “Growing with Love”