Time, Wounds — and Healing?

The day after Julianna died, we got rid of all her medical equipment. We were indebted to the machines (they kept her alive, after all), but when they were no longer needed, I wanted them gone. Stupid machines; stupid disease. I hated it all.

So the machines went away, and our house went quiet. I no longer heard the whirring of Julianna’s feeding pump (it ran thirteen hours a day) or the constant whoosh of her BiPAP.

Of course, the sound I missed most was Julianna’s voice, her constant observations and ridiculous wit.

Let me tell you something…

Ooh, what’s that?

Let’s play!

And so much more…

Last summer, the silence of our house was overwhelming. It shouted at me, cruelly: JULIANNA IS GONE. SHE IS REALLY GONE.

One year later, it feels different. It’s still too quiet, but it no longer taunts me. We gave her the most beautiful life that we could. She was surrounded by love. She is free. There is peace in this kind of silence.

I don’t think that time heals all wounds, not when the wound goes straight through the heart. But the pain is not quite so exquisite. It’s less likely to maim. Is this what one year does?

And then, I see it. It’s pure gold, a forgotten photo:



Sept 2013

My heart is filled with joy, and then it is crushed.

This is her pre-K class photo, her only class photo.

She was able to sit up – by herself. This was before the scoliosis destroyed her spine.

Her fingers aren’t that curled. Why didn’t we paint them that day?

Her jumper was from Costco. It seemed like a good back-to-school outfit. I often had a hard time getting out of Costco without getting her another frilly skirt or princess dress. Her eyes lit up and she always said “I love it!” I still can’t go into that section. I miss that.

Her pink tennis shoes. Finding shoes that fit over her orthotics was work. They had to be big but light, and not completely ugly. I usually bought ten pairs of shoes and was lucky if one worked. When I found these, I bought the next size up –but she never got to use them. A few months after this picture was taken, her CMT took over, and we started our year from hell. She lost the ability to stand, then sit.

Her hair is in her signature bob. Could it be any cuter?

And that face, that smile, those eyes. Her mischievous, knowing, beautiful eyes. What was she thinking? What would she have become? What would she be doing now?

There are wounds that cannot be healed on this side of heaven. This will not go away.


This weekend, we attended a bereavement retreat. The theme was the “Wild West of Grief.” Each family made a craft project that depicted their grief journey.

This was ours:


It was a bit too much, but I think that she would have loved it.


This is your last chance to get the 2017 “Love is a Superpower” t-shirt. All proceeds will go to CMTA. Orders need to be in by 31 July 2017. Adult and children’s sizes are available.

Click here: 


Life is an Adventure: Part II

The guided part of our trip was done by Adventures by Disney, which is fitting given the fact that Julianna was — well, Julianna.  (“All the Disney princesses are real — seriously!”).


(Yes, Disney does guided vacations – I didn’t know that either. And no, they are not led by Disney characters. But it was magical.)



Our fearless and energetic Adventure guides.


At check-in, our Adventure guides asked if we were celebrating anything special. I stayed quiet, because the truth is complicated. Were we celebrating? Running away? I had no idea…apparently, at one time, I thought it was a good idea to take a big trip on the first anniversary of my daughter’s death.

“We are celebrating the life of my granddaughter. She died a year ago, but we don’t want to make this a sad occasion,” said my mom.

“Yes,” I thought. “Exactly what she said.”

The truth will set you free, even when it iscomplicated.


For Julianna, life was a celebration and princesses were real.

Bella Italia

The Italian Lake District is just an hour away from Milan, but it feels like a different world. Our first few nights were spent in Stresa, a town that manages to be both stunningly beautiful and quaint.


Stresa sits on the banks of Lake Maggiore.




Near the town square in Stresa.


We stayed in a fancy hotel



and ate gelato (at least once) every day.



We visited Isola Bella (the beautiful island), site of a magnificent palace and gardens. It belongs to one of Italy’s noble family, the Borromeos.


Isola Bella


Garden side view of Isola Bella.


No shortage of chandeliers in this place…



Their mascot?



Just like us.




Switzerland is educated, prosperous and pristine. They are known for chocolate and neutrality. And, like the Disney princesses, it is real.

It’s also a ridiculously beautiful country. Photos run the risk of looking fake, it’s so pretty.

This, for example, is from a rest stop.


In full disclosure, it was a mildly forced spontaneous moment of beauty — we made Alex hold the unicorn.



And these are some of the highlights.

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On our last full day in Switzerland, we went to Mount Titlis (elevation 10,623′), one of the highest peaks in central Switzerland. You reach the top via gondola. About halfway up,  we stopped acclimate and take in another stunning Alpine vista.

On that gorgeous mountainside, our Adventure guides presented us with a unicorn, and we all celebrated the fact that Love is a Superpower.


(Later, I learned the backstory. The Swiss town we were visiting was devoid of unicorns, so our Adventure guides found a pony and fashioned a horn out of pipe cleaner and glue.    (Love + a bit of Swiss ingenuity = Swiss Unicorn. As Julianna would say, “Perfect!” And touching.)


And we went on one, last big adventure — the biggest of them all.

We sledded.

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Walked through a glacier cave,


The glacier ice was impossibly smooth, but somehow not slippery.


And it was very Frozen-esque.


and took a stroll on a suspension bridge — way, way up in the Alps.





At the farewell dinner, we enjoyed music from a trio of alphornists.


The alphorn is a musical instrument, but it was also used to communicate between villages.

Their final song: Amazing Grace, one of Julianna’s favorites.


For the parent who has outlived their child, the world is different. If we’re honest, it’s a little less dear, for it no longer contains all that is most important to us.

But there’s a lot of beauty left in this world.  It’s in the mountains and pastures and oceans and lakes, in people and gestures and laughter.

It heals, this beauty, because I know that it is but a fraction of what she sees. And it reminds me that life is still an adventure.





The last line of Julianna’s Adventures.

Life is an Adventure – Part I

There is a certain freedom that comes after you’ve endured a monstrous loss. When you’ve gone through the worst, is there anything left to fear?

As it turns out, yes. Anniversaries, holidays, social gatherings, polite conversation, fading memories – all terrifying.

For months, June 14th loomed large and ominous. What are you supposed to do on the anniversary of your child’s death?

The answer to this terrible question is as individual as a fingerprint. For me, one thing was clear: We would have to go away. And considering the thing we were escaping from, it would have to be big.



Has it really been one year? .


Enter Italy and Switzerland.

Switzerland, because my mom has wanted to go there. Italy, because I found only one guided travel package that would get us to Switzerland around the right time, and it started in Italy.

My spirits lifted as we made the reservations. It would be a grand adventure. Julianna would definitely approve!



A few months later, I regretted it. Travel requires stamina and an open spirit; grief is exhausting. I felt like spending June 14th in bed.

Fortunately, the deposit was nonrefundable.


Julianna’s First Heaven Day


The group tour was set to start on 16 June. To accomplish my goal of being AWAY on 14 June, we flew into Milan a few days early.

Breakfast at the hotel looked more like a tea party.


This may have been Alex’s favorite experience in Milan…


We visited the Duomo, Milan’s massive gothic cathedral.



(It reminded me a little of this picture — the Duomo is not subtle…)


“Too much is never enough” — one of my favorite Juliannaisms.


We lit a candle in front of the picture of the Madonna and Child.



And learned that it is the only cathedral in Europe that is made of pink marble — who would have thought?



We also saw a castle.



Sforza Castle, built in the 15th century by the Duke of Milan.




Alex did log rolls in a former moat.


Then I spent the rest of the day in bed nursing my jet lag and my grief. I listened to recordings of our sweet girl and I missed her, just as I have every second of every minute of every day that she’s been gone.

Like the love that causes it, grief never stops. You have to make room for it, even when you are halfway around the world on the trip of a lifetime.


Part II is coming soon…