Holding a Candle in the Rare-Disease DIAGNOSIS Darkness

If I could describe what it felt like after I received my son’s rare-disease diagnosis, which was extremely severe and life-threatening, I would describe it as the lights being shut off. I felt alone and scared in the darkness.

Or I would describe it like a rain cloud moving in directly over my head, taking away the light of the sun, and raining on me all day long, day-in-and-day-out, for months. I felt cold, wet, and dreary.

There was a point that I couldn’t stand the darkness any longer. There came a time that I missed the sunlight and longed to feel its warmth on my face. There was a moment that I couldn’t stand being wet and shivering in that cold any longer. Eventually, I had to get up and walk out of that darkness and out from under that rain cloud, and into the light. It was my turning point.

But in order to come to my turning point and to break through, I had to sit in that darkness and under that cloud for a while. Truth: I’m the type of person who doesn’t like darkness or rain clouds. It was hard for me to be in that place. But sometimes, it’s inevitable, and sometimes, it’s even necessary. Yes, it’s dangerous to sit in the darkness too long, but it’s also dangerous to skip over it altogether.

I had to learn to sit with my child’s rare-disease diagnosis. I had to sit with all those scared and sad feelings. I had to feel them all. Though this was the hardest time of my life and though my heart was shattered, there were a lot of things that came from those days sitting in the darkness. I had a lot of talks with God during that time. I did a great deal of soul searching and self-discovery. Somewhere there, in that darkness, I found my highest faith and my truest self.

Sitting under that rain cloud and allowing the rain to wash over me was a mix of feeling like I was drowning and also feeling as though I was being cleansed. It was the hardest surrender of my life. It was the ultimate acknowledgment that I was not in control. For me, sweet surrender was more like an all-out wrestling match, one that declared me knocked out.

You may be sitting in this darkness, and you may feel like there is no way out. You may be under your own rain cloud, and it may seem like you will never see the sun again.

Every ounce of my being wants to hurry you along on out of there because my heart bleeds for you. It aches so badly, thinking of another mother sitting alone in the darkness grieving her chid’s rare-disease diagnosis. I have tears streaming down my face even now as I write this, thinking of you. I know the pain. I can recall it like it was yesterday. It hurts my heart, knowing you are suffering and in distress. I want to scoop you up and run you right out of there. I want to grab my umbrella, hold it over you, wrap you in a warm blanket, and walk you off into the sunset. But I know I can’t.

As badly as I don’t want you to hurt, I know you may have to sit in the darkness too. We all have a time when we must just sit in it. As difficult and gut-wrenching as it is, I know I can’t wave it away for you. Oh, how I wish I could and how I so desperately want to.

Sometimes, a true friend will just sit with you in the darkness while you grieve. I know it’s part of the grieving process and a necessary step that cannot be skipped over or denied. So I will sit with you, right there in it.

I know I can’t take it away for you. But I can light a candle.

I can light a candle so that you can see that there is still light. I can create a spark so that you can feel that there is still hope. This tiny light can serve as a reminder that the darkness doesn’t have to consume you. As hard as a rare-disease diagnosis is to process, and as dismal and dreary, as all may seem and feel when you are ready, you will notice this little shining light. It may be small, but it still gives off a glow. That glow may not be enough light to illuminate the entire path before you, but it may be enough light for you to see the ground right in front of you. And that may be enough light for you to take a step. That one small step is all you need. Just one little step forward.

I will hold that little candle until my arm gets tired. I will hold it for as long as you need and as long as it takes. I will be silently praying for you, perhaps as you go through your own wrestling match and as you work your way through it.  

One day, when you are ready, I know you will get up and walk out of that darkness and out from under that cloud. You will make a decision to get up and do all you can to help your child and start fighting that rare-disease diagnosis. And when you do, I will hand off the candle so that you may use it to light the rest of the path ahead of you. I will pass it like the passing of the baton, from one rare-disease mother to another, off to run the next leg of the race, off to do good work, off to take care of your amazing child.

I can picture you getting up, dusting yourself off, wiping away your tears, and walking right on out of there. And I will be thinking to myself, “There she goes. She did it. It was long and hard, cold and wet, but she did it.”

I’ll be watching in awe of you as you set off on your way. I will be fist pumping and cheering from the sidelines.

But until then, for now, right now, I will hold a candle in the darkness for you.  

Ps. When you’re ready, check out this post “The 6 Things You Need to Start Your Rare-Disease Fight,” to get you going along your way. Also, if you need more information about a disease, check out the Rare Disease Database from the National Organization for Rare Disorders (NORD).