On the day she left, she took a nap and never woke up. At least that’s how I remember it. 

It was strange, because daytime napping was not in her repertoire. She had a cold though, and I was glad she was getting some rest. After a few hours, I was worried. When the hospice nurse took her blood pressure, I knew. 

Despair — instant, undiluted, overwhelming despair — came next. Then, panic and disbelief.  There was anger too,  but it was quickly suppressed because I wanted her to know only peace in her last moments. The rest of it is a blur, but by all objective and intuitive measures, she was comfortable. I don’t even know when she died exactly, because it just seemed like she was in a deep sleep.

I rediscovered this picture recently.

It’s her last picture, and I avoided it for years because I don’t like the idea of a last anything when it comes to Julianna. The picture was taken shortly after we realized she was dying. When I could breathe again, I gave her the most desperate and intentional hug of my life.  My memory tells me that she was sleeping, but the picture proves that she was awake.

I don’t know what this means, other than the terrible truth that memories  are unreliable.Her memories are now older than the number of years she got to make them, and they have weakened. Some have even disappeared. It’s one of the things I hate most about the passage of time.

She’s a feeling now, stronger and bigger than my aging memories. I feel her urgency, lightness, delight and depth. Rip-apart pain, paralyzing fear, pure joy. And the Love that covers everything.

Eight years ago today. 

One of the things I miss most about our old house is the sweeping vista from the back porch. It faces west, and during the winter especially, we saw brilliant pink-orange sunsets that we named “Julianna sky.”

The view from our current house is decidedly more mundane and consists mostly of our neighbors’ yards and houses. I see glimpses of pink sky still, but they are rare and usually occur as I’m in a rush to get to work. They still make me happy, though, and I have learned to enjoy them as little reminders of what we had. 

Reminders and memories are abundant during the holidays. It’s what makes me love the season, and what makes it so hard. For me, there’s a tension at Christmastime. There’s the superficial sparkly stuff (which I love) vs the true meaning (that gets lost), the joy and pain of memories, reunion and separation, darkest night and brightest light. Grief and joy. 

I have been missing her more lately. I feel the need to do something more intentional to remember her during the holidays. Her ornaments are on the tree and her stocking is up next to ours. There needs to be something more, though. Maybe we’ll start another tradition next year. A candle? A special tree? A Christmas unicorn? 

Then this morning, there was this:

The pink sky lasts but a moment, but this one stayed for a few.

I ran to it, out of our neighborhood and into the next, the way I will when I see her again. 

CMT is a hereditary neuropathy, meaning that the nerves don’t work well because of a genetic mutation. To date, over one hundred gene mutations have been identified as causing the CMT.

Until last year, we did not know the gene mutation that caused Julianna’s CMT. At the time, she didn’t match the eighty or so mutations that were known then. She had “CMT, type unknown.” Articulate and honest, Julianna called it “stupid CMT.”

Now we know that it was caused by a mutation in the ITPR3 gene, and “stupid CMT” has a new name: CMT1J. Researchers have found over thirty people so far who have CMT1J. They live all around the world, and the severity if their disease is, likewise, all over the map. 

When I found out that the killer of my daughter had a name, something shifted. After so many years of thinking that we were the only ones, it feels strange but comforting to know that there are others. There are lots of other emotions too, ones I’m still working through. 

One of the hardest is the feeling that I have to do something about it. This is what a warrior mother would do, isn’t it? I need to make people care, throw galas, get grants, raise millions of collars and get a CURE for the disease that killed my daughter. Triumph over tragedy, heroics following heartbreak. It would make a great story. 

Here’s the truth:

I don’t know if we can do it, and it means so much that I feel frozen sometimes.

I miss her, every day, in the deepest part of me. Sometimes it feels like it only gets harder. 

I have to try. I have to at least try. 

Earlier this year, another family and I started the 1J Foundation. Our goals are to find the 1J community (affected families, researchers, supporters) and fund treatment. I added Julianna’s biography today. 

Thanks for reading. 

PS, if you like chocolate and want to help the 1J Foundation, please visit our Sees fundraising page — good until 12/1/23.

She was not quite six years old when she left me
Six years ago today, exactly 

It happened some time this year
the switch, the exact moment 
I started having more time 
Without her than with

I could have done the calculation 
even now, I could figure it out
to the minute, probably 
But I didn’t and I don’t 

When my loss was fresh, I counted 
How many hours, days months 
since her last haircut or Christmas or hospital stay?
I kept a record of something that happened 
To someone who matters
a merge of past and present tense
No future 
All I could do then was hold on

I count still, but less
I hurt still, but differently
Less fire and turbulence 
More longing for something that only gets further away 

The sacred space (because she was there)
The sacred time (because we knew it was finite)

It starts in the springtime, a heaviness that whispers “It’s coming again.”

As things start to bloom and the days grow long, I think of her last months, when her body was fading and her time, always short, ran out. 

It’s different this year, maybe because I’m separated from her by both time and distance. We’re out of our home, hundreds of miles away from the pink petals of her Korean dogwood and the glittery walls of her princess room. A room that has witnessed your purest joy and deepest pain is more than just a room, just as June 14th, the day that marks the anniversary of something sacred and terrible, is not just a day.

---

I wonder if there’s been an hour, even one waking hour, during these last five years when I didn’t think of her. 

I doubt it, this year especially. Time and distance mean that some memories fade and there are less physical reminders of her time with me. The work I’m doing though, caring for people with failing bodies and shortened time, makes me think of her more. 

She’s there, in the hard conversations and the held silence when there are no words. She reminds me that patients are people with dreams and imagination and stories and that these things need tending. She makes me want to do more for their loved ones, because being a caregiver is harder than anyone can imagine. She helps me bear witness to suffering — because it gives meaning to my own. 

• 

---

And so we’re here again, another June 14th.

I’m at another crossroads as my fellowship ends. A new job in a new city will take us away again from the home we made with her. The thought of leaving it (permanently this time?) feels overwhelming, so I avoid it. 

 I know, though, that a physical home does not contain her, no more than her physical body ever could. I’m grateful to her body for the five years it allowed her here, and grateful that she is free of it now. 

It happened five years ago today.