Today she would have been nine. But what does that even mean?

I can imagine six – she almost got there, after all. And seven isn’t so different from six. But eight, now nine, next year ten. A decade! My mind can go there, easily, but my heart doesn’t allow it. It won’t be crushed for a fantasy, not when life already contains such abundant substrate for brokenness.

An older Julianna is not an option, so I think of the past. Babies are magic, and she, with her perfectly round head and gummy smile, was no exception.


almost one here

She was not an easy baby, though. My strongest memory of her first few months is crying — mostly her, but me too as I rocked and paced, rocked and paced. Why wouldn’t she stop crying? It was colic, and I couldn’t wait until it was over.

She outgrew it, but then the real problems started: worry over missed milestones, a diagnosis, determination to beat stupid CMT. Then, abject fear when we realized  we would not.

Life was a serious of obstacles. Things would be OK if we could just get past them. When she starts walking; when we get the feeding tube in; when we get out of the hospital…it will be OK. 

Security based on supposition is not actually very secure at all. What if it doesn’t work out and life is most certainly not OK? You go to Plan B (then C, D, E and F) and get more desperate. If the cause is noble and you fight hard, it will work out, right? It has to work out.

This, as it turns out, is another supposition. The most earnest and pure longing of my heart, the desire to simply see her grow up, was not guaranteed. At some point, I stopped looking into the future; I couldn’t face it anymore.

Enter Julianna. If you spent any time with her at all, you knew she was special. If you managed to put away your phone and internal checklist and worry, you entered a world created by an agile mind and tremendous heart. And it changed you.

Her eyes said it all. They contained ancient wisdom and saw things that a child shouldn’t face, but reflected only peace and deepest love — and mischief.


I wish I knew what she was thinking here. Photo by Aubrey LeGault

They told me that things would be OK in the end, the real end. If I had ever doubted it before, I couldn’t now because she made it too real.

But enough of all that, they said. Life is short for all of us, so you have to play and sing and laugh.

And move, as much as you can, because you can. For the joy of it.

It really will be OK in the end, but right now, live.

So on the day she would have been nine, I’ll look for something beautiful and do something fun. The past is not accessible, not in the way I really want, and the future seems too long without her. All I have is now.

She was happiest when I stayed there with her.



June 14th  is a day of personal infamy. How else to describe the day your child dies?

We had been in hospice for eighteen months and were as well prepared as possible. It stunned, though, with overwhelming and vicious finality, like an almost-lethal blow to the solar plexus of my soul.


Her last picture.

June 14th is just a day, like my children are just people. It’s as important as their birthdays but a lot more dangerous. It can’t be ignored or wished away: it requires reckoning.

For me, the only answer is escape. This year, it was Scotland, a country whose national animal is a unicorn.


Holyrood Palace, Edinburgh

We left the evening of June 13th, on a plane that chased the sun over a northern arc. It never got dark, so June 14th seemed indefinitely delayed – and then we were fully in it. Not unlike our time in hospice.

We saw the moon, but it never got dark.

My first impression of Scotland was warmth. Not weather, (it was overcast and in the 50’s) but the people. From the woman who met us at the airport (She was in a pink tweed jacket and sparkly burgundy shoes; “It felt like a pink kind of day when I woke up this morning,” she said) to the kilted, septuagenarian hotel greeter who fist-bumped as way of greeting, it was everywhere. Scots are down-to-earth, friendly and inquisitive. They are as wonderful as their accents.


Edinburgh airport

They are also great storytellers. We learned about kelpies (water spirits that look like horses but for their wet manes.  Miss the tell, and they may drag you down to a watery grave.) and lost pipers and angel’s share (the bit of whiskey lost to evaporation as it matures. A scientific principle, infinitely more delightful as a story.)


A kelpie – just a sculpture, though.

Here’s another:


17 Heriot Row, Edinburgh

Almost two hundred years ago, a little boy lived here, on 17 Heriot Row. He had weak lungs and missed a lot of school. He couldn’t play outside with the other kids, but may have heard them from his bedroom window as he convalesced. There, his beloved nurse cared for him and told him lots of stories. He began making his own – and never stopped. Later, he would write about pirates and adventure, good and evil.

This was the childhood home of Robert Lewis Stevenson, author of Treasure Island and the Strange Case of Dr. Jekyll and Mr. Hyde.

(That which limits the body has no hold on the imagination. I learned that from a little girl who used to pretend that her bed was a magic carpet.)

There’s great beauty in Scotland, both natural and made.

It’s in the castles:


Floors Castle

with  their fancy ceilings;


J would have loved this — and asked us to reproduce it, I’m sure.

In the cities,



the countryside,


Highland cow in, appropriately, the Highlands.

and water.


Loch Ness

There are a lot of gravesites in Scotland, more than I’ve seen in any other place.


They are a part of the stories too, which, as it turns out, are more than just stories.


Clan gravesite marker at Culloden, the site of the final Jacobite rising against the British in 1746. 1600 died in less than an hour. 1500 were Jacobites. It was also the end of the Highland way of life.


The Jacobites were trying to restore the Stuarts to the throne. Their leader was Charles Stuart: we followed you prince, to this ocean of flatness and bullets. 

They are remembrances — because to forget is to lose a part of yourself.

On one of the last nights, we attended a ceilidh (pronounced Kaylee). In a beautiful old room with twinkling lights and a distinctly pink glow, we heard more stories and listened to the fiddle and pipe. We swung around and around in a Scottish line dance that brought a bit of dizziness and a lot of cheer. A ceilidh is a gathering, and it is a celebration.


At the very end, we sang a famous song from the famous Scottish poet Robert Burnes: Auld Lang Syne. 

Should old acquaintance be forgot,
and never brought to mind?
Should old acquaintance be forgot,
and old lang syne?

For auld lang syne, my dear,
for auld lang syne,
we’ll take a cup of kindness yet,
for auld lang syne.

We sang about those we love from days of old, for they need celebration too. They stay in our heart — and become part of our story.

PS: Unicorns.



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Our decision to go to Scotland was informed by the mundane (schedule, budget), not the magical. The unicorn was just a happy coincidence. (If you believe in that sort of thing, which I don’t. Not since I started listening to a girl named Julianna…)