Author: New View for PAN

Today, I am in disbelief.

When your child has a rare disease, you start questioning everything from a very young age, school friendships, relationships, and health. Every milestone carries a weight that’s impossible to fully explain to someone on the outside. You get there, and internally, something monumental shifts. Because you got there.

I remember sitting with a surgeon during one of Kelsey’s early surgeries, crying. I was worried about a scar on her neck, worried that she’d be self-conscious about it at prom, at her wedding. That it would follow her. And that surgeon stopped me and said, “Mom, we have to get her there first, right? Let’s not think about the scar.”

That one sentence changed me. Quietly, permanently.

Kelsey was two years old. I can close my eyes and be right back in that moment like it was yesterday.

She’s 15 now.

She has had some of the best medical care imaginable, doctors and specialists who have walked alongside us on an international level. The gratitude I carry for that will never have the right words. It just lives in me.

At 15, she also had her first boyfriend. Ready or not, those milestones we once wondered about are starting to reveal themselves, one by one.

But let me tell you about this morning.

We were running late, me for work, her for school, when she came in to talk to me about something. I never know what’s coming with a teenager. You just brace and listen.

Never in my wildest imagination did I expect her to bring up her boyfriend’s donation strategy, how he wants to contribute to her rare disease foundation, and make a difference.

I didn’t have an answer. I told her I needed to call his parents first, just to process it all. But I sat there after she left the room, completely still.

You wonder for years. You worry. You prepare yourself for hard conversations, hard news, hard days. And then life hands you something you never thought to prepare for, the unexpected, genuine kindness of another person’s child.

When my kids were young, our dinner table question was always the same: “What have you done for others today?”

Maybe that pays forward in ways we can’t always see. Maybe it comes back around through the people our children choose to love.

Today, I’m running on that.

In the shadows lurk the feelings we often hide and lack the courage to face.  When we are fortunate enough to celebrate life’s joys and moments, it is easy to forget the pain others are enduring and the suffering we can cause or watch those around feel when our head hits the pillow or our car reaches its final destination at the end of the day.

Recently, a moment took me far back into the depths and the void. I felt it necessary to honor her story tonight.  It is not because the void is erased or the emptiness gone, but sometimes life moves at the speed of light, and we lack the space to find the time.

One week turns into a month, and that month turns into a year.  Before we blink, we lack the energy, courage, or strength to talk about everything we wanted to say in the space between.

When Kelsey was three, she was diagnosed with Polyarteritis Nodosa (PAN).  Dada2 was not known to the world yet, and I still recall that being one of the hardest days of my life to date.   I remember a crippling sensation inside and an outward strength forced because I had a child in my arms and one at home. Pretending that everything was ok was the only choice I saw.  When a year or so later, we found out that PAN was a manifestation of dada2, I can recall being numb and not even feeling empty.  I felt confused more than anything else. No one seemed to understand.  I once had a nurse from Kelsey’s school ask me if dada2 was a Jamaican band or something I made up, as if I would make something so important up about my child.  Some days, we can struggle to make it through a simple call to our school, for something so small or insignificant, when we are just trying to get through our morning coffee.

And sometimes, when we are trying to end our night with a happy social media scroll, we see a post that hits us with that empty feeling instead.  This one has been with me for about a week now, and I wanted to share it with Kelsey’s Kaleidospoce, Inc.

One week ago, a four-year-old child named Maggie with dada2 who had brilliant blue eyes that once sparkled vibrantly and blonde pig tails that likely bounced with joy passed away and lost her fight.  Empty, void, and numb struck me once more because so often I tuck away fear and worry and instead embrace the gratitude and power of the medicine and wisdom we have witnessed treat and care for children with dada2, like Kelsey.  Losing Maggie, this sweet child in our community, and at such a young age, just shouldn’t happen. Thank you to those who support our cause, attend our events, and fight the fight with us.

The void is great today, and there are so many more families around the world who have a story like Kelsey’s.  Hearing Maggie’s tragic passing brought me to tears and a difficult place.  It also compelled me to say to those suffering with anything today, hang in there.  

The smile never tells the whole story.  Sometimes, the smile is just the perspective we can offer as our grace of the day.

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Venmo – @NewViewforPAN

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Venmo – @NewViewforPAN