What happened to Sophie was not fair. It was the very opposite of fair. But we try to take some solace from a belief that the opposite of fair is random, and not unfair...

If Sophie can pick herself up, and smile again, so many times after life knocked her down so hard, so can we all. And if Sophie can freely give and receive love even in the more dire of circumstances, so can we all.

I said both these things at Sophie’s service. For me, they best represent the way Sophie conducted herself in her short life, and what I learned from being a part of it. I try to keep those lessons close as each day rolls by and Sophie’s memory slowly recedes from the foreground, like a stabbing pain becoming a dull ache. But I know I can do better, especially when it comes to giving love freely and giving people - Jana more than anyone - the benefit of any doubts.

Humans grieve differently. Certainly Jana and I do. I was brought up in an emotionally stoic Scots-English environment where problems were things to move past and learn from. So, after the initial shock, I tried to recall my happy times with Sophie, remember what her struggle taught me, and move on to life’s next challenge. In a sense that involved putting Sophie behind me, but never forgetting her bravery, her struggle, her smile.

That was not how Jana coped. For her, Sophie’s death soured almost everything. If something bad happened, it reminded her how things were for Sophie. If something good happened, it reminded her what Sophie had missed. Sophie’s death wasn’t quite all consuming – Jana could still get out of bed and go through the motions of the day – but she felt little joy, and that little joy was only fleeting. Much of life became a fog for her, Sophie's struggle a thick, enveloping cloud.

These differences in our perspectives on life predate Sophie’s death and even her birth, but our experience with Sophie deepened that divide from a pothole to a cavern. Even now, it is often hard for Jana and I to reconnect and be a couple again. We are still a good team, and we care beautifully for Paige, but the spark of something more remains elusive. Our views of the world, once quite well in tune or at least complementary, are a source of underlying conflict. Our marriage has had a hard four years. We try to fix it regularly, but we have more repair work yet to do.

From: Rob Salmond
Sent: Monday, February 13, 2012 10:20 AM
To: Fifer, Carlen; Dr Gail Wright
Cc: Jana von Stein
Subject: A year

Dear Carly and Gail,

Sophie died a year ago today. As part of remembering her, we wanted to write and say thank you to everyone in your teams and the team at Boston, but to the two of you especially.

We think of you often, and about the work you continue to do to save other children like Sophie. Although Sophie's battle was ultimately a losing one, we will be forever thankful for all the everythings that you gave to her as she fought, and for the friendship you gave to us as well. Looking back, we think that part of the reason we were able to enjoy Sophie during some of her time in hospital, and help Sophie enjoy some of that time as well, was because of the great relationships of warmth and confidence that we had with you. Thank you.

Here are a couple of recent pictures of Paige (from her first birthday party, a Halloween costumed affair). She has a lot of Sophie's cheerful spirit in her. We are looking forward to reintroducing her to both of you soon.

With love,
Jana and Rob

Knowing Sophie has affected me in other ways. I have more respect and affection for medical people than I used to, for example, but more doubts about the science they rely on, too. Jana and I both have a pretty good store of medical knowledge we would rather not, but we like to use it to help other heart families who cross our paths.

I react to TV and movies differently than I used to, too. Stories of endurance and struggle make me think of the protagonist as Sophie, and root for them even more. When a writer inserts the death of a child for some cheap pathos, I feel sick. And any time an older man is reunited with a younger female relative, like in Ocean’s 12 or Inception or The Girl with the Dragon Tattoo, I drift away for a moment. I wonder if I could have a moment like that with Sophie. I remember the feeling of her head on my shoulder and her hair on my cheek. I hope for a second that the universe has played a trick on me and Sophie is waiting in the next room. Snapping back to reality is sad, but the escape is worth it.

Of course objective circumstances to move on, whether a person is emotionally ready or not. Paige grows bigger and smarter before our eyes, daring us to update and adapt. We are moving to New Zealand in January, too - we are sick of frigid Midwestern winters! Inexorably, our lives are moving on without Sophie.

Paige has grandparents and aunties and a cousin waiting for her in New Zealand. She won't remember much of Ann Arbor, much less her sister. Sometimes Jana gets sad about leaving Sophie in Michigan all alone. It seems like abandonment. But Sophie is no longer there. She is not anywhere. She cannot feel our love any more. But she feels no pain, either.