Nora's Free!

Dear loved ones,

She’s free. Her last gift to us was that she did not linger when it was time to go. We do not feel that she was in any way suffering. Her lung function had been steadily decreasing over the past few days, and this evening after her cousins Joshua and Sabrina had visited her, things seemed to accelerate. Through the night there was a steady increase in her work of breathing, and a corresponding increase in the doses of medication we used for her comfort. She stopped breathing while resting in Janelle’s arms with all of the tubes, probes, and monitors removed. Soon after she passed around 4:15 a.m. (June 4), a beautiful, swift thunderstorm swept over Charlottesville, with brilliant flashes of light. My comment to Janelle was, “the atmosphere just doesn’t know what to do with a spirit as big as Nora’s.”

This has obviously been the hardest moment of our lives. It has also been, along with the births of our two children, one of the most awesomely beautiful. Nora died the way she lived: courageously. Probably nothing could have ever been done to change the fact that Nora was going to live a brief life. We feel that every reasonable thing that could have been available to her was made available.

Janelle and I are experiencing waves of sadness combined with waves of relief in untidy combinations. We have, over the course of these seven months, adjusted our expectations for Nora’s life so many times: far beyond what had known was possible for us. Even here at what turns out to be the end, we were prepared to work to accommodate her needs into our lifestyle and to assure that she had the most fulfilling life possible for her. And I think she did have the most fulfilling life possible for her. It was a good, good life. In so many ways Nora was so unlucky. Likely there are, at most, eight recognized cases of her condition in the world genetics literature, if we understand correctly. But she was who she was, and I know in my heart that she was a lucky girl, because we loved her like crazy. And we are lucky, too, all of us, for having known this precious child, the likes of which we will almost certainly never know again.

We are not looking forward to this morning’s hardest work of telling Kali about Nora’s death. Please remember her as she copes with the loss of her prized and precious, if limited, little sister.

I am sure many of you will be contacting each other or us to know what you can do to help, and I am sure of that because of our precious experience with community that has gotten us through the last ten anxious months. We don’t know yet exactly what will be helpful to us, but please know the following: we are o.k., we feel blessed beyond measure, we love you, and we need you. Particularly we already feel that we will need to be around babies. Earlier today our friends and neighbors Kristin and Phoebe Yoder Kaufman visited our family, and Phoebe was such a light to us. Her visit was the last time Nora really perked up and paid full attention to the world beyond her body.

We have another request. We have come to understand that our family’s unfolding story has been circulated more widely than we had originally anticipated when we set out to keep our close friends and family informed through these semi-regular updates. We find ourselves wondering just who and how many of you there are by now, so our request is that if you have been willingly receiving these updates on any kind of regular basis you would simply send us a message confirming that that is the case and including your name and physical location, along with any other contact information you would like us to have. If you wish to include any comments regarding what sharing this journey with us has meant to you, for that we would be grateful, as we have been compiling supportive communications into an unedited document that has now reached some 300 pages in length, and which will be a source of strength for us in the times that surely lie ahead for us as we grieve Nora’s physical presence in our lives.

I guess we’re going home today.

With a sorely grateful heart, Jason Myers-Benner, for the entire Myers-Benner family.

Most of my (Janelle’s) reflections will wait for another day. I’ve busied myself with cleaning up on our room here on 7 West, sometimes with clear vision and sometimes through tears. Every time I accidentally close a door loudly I find myself flinching worrying that I’m waking Nora from slumber. As I walk onto the ward to get coffee for Jason and hear buzzers I automatically wonder if it is Nora’s monitors going off. I find myself in a state of disbelief that we have really come to this place, that Nora’s physical presence is no longer with us.

One thing that must be mentioned in this update is that Jason and I feel incredibly blessed by the care we have received in this place. We have had nurses and doctors cry with us, as they have competently cared for us and Nora until the very end. At the beginning of the night, when Nora seemed to be working harder to breath, it felt to both of us that Nora was sharing that the time had come. And, in many of the ways that I feel I prepared for labor for our children, I found ourselves preparing the space for Nora’s death. We pulled our little mattress over as close to the oxygen and monitors as possible and lifted Nora’s little body down onto a blanket between us. That is where she stayed until I lifted her into my arms to cradle her as she took her last breaths. We talked to her, cried with her, shared memories and thanked her for all she taught us. Her nurse, Molly, was absolutely amazing, immediately present with us as needed and letting us to be with Nora as much as possible.

I know for myself I will need to write more in the coming days. For now, I want to share a poem that my Dad wrote in the wee hours of the morning after we called them.

NORA’S FREE

I hear the birds singing

Nora’s free

Left us she did

Amidst peals of thunder

The heavens welcoming

A vibrant spirit

While the earth slept

Her fist raised

Binky in hand

When I left

Yesterday

“Grandpa,

I can do it”

Do it she did

Held too little

So fragile

Yet

Loved so much

Both ways

Gifted by a final knowing glance

After a goodbye kiss

I love you, Nora

Now the heavens have her

Great Grandmas

Cradle her

In their loving arms

They’ll hold her much

And love her more

While we grieve

And hold each other

God, encircle us all

Amen