We were asked to share briefly from our journey this past Saturday at the UVA Children's Hospital Memorial Service. as parents who have lost a child. Below is a copy of what we shared. We were grateful to be there with our parents, Kali and Jason's sister, E. As it was last year, it is good to gather with others (even if we exchange very few words) in that space to remember, grieve and celebrate these little people who had such a large impact.
UVA Memorial Service sharing:
Can any of us gathered here today find words to adequately describe the journey of loss we have traveled with our loved ones? How do we honor each of our stories, knowing that each person’s loss is their own? What we all have in common is that we had to say goodbye way too early to a child we loved, that we are grieving that loss and looking for ways to remember and celebrate the lives of our children.
Our daughter, Nora Lynne, was born here at UVA October 30, 2007 and died here on June 4, 2008. Nora was born at full-term weighing 3 ½ pounds with a rare genetic syndrome that prevented her body from growing properly. Despite avid nursing around the clock she never crested the 7lb mark. However, the syndrome did not cloud her mind or inhibit her relationships. She was inquisitive and cuddly and lit up when her big sister came into the room. While most of her short life was spent at our home in Keezletown with us and her sister, Kali, she spent about 5 weeks of her 7 months of life here at UVA. We struggled to navigate our way through the complex medical system, all the while attempting to care for Nora’s needs with as much grace and strength and integrity as we could muster under circumstances in which we never would have wished to find ourselves.
Yet during the course of her life we came to deeply appreciate not only the professional competence but also the personal strength and sensitivity of Nora’s medical caregivers. They shared a precious and painful time with us, and many of them got to know Nora better than some of our friends and family were ever able to. Even while the constant beeps and alarms from the various technologies heightened our anxiety, these caregivers often managed to fill those stressful and anxious times with compassion and empowerment.
A few months after Nora’s death we attended a retreat here at UVA organized by the Initiative for Pediatric Palliative Care for the benefit of the many persons, both family and professional, who care for children with life-threatening illnesses. The interaction with professional caregivers was very meaningful to us, and after the retreat Jason wrote the following poem, entitled Surf:
For those who care for dying children
Mine was
a swamp I had to traverse (I am
still wiping the mud from my eyes), but you do
this every day, and then you have
to go home and eat
your dinner.
It must come on you like waves, lapping, tumbling, crashing
even; never resting. And so maybe you are one of
the rocky ones, hardened against the surf, protecting your
shape, preserving the mainland. Or are you the sandier
shore? Do you allow the waves to change
you?
Here is something I believe about you: no matter how you
bear the surf, there must be a place in you where a little water
collects. I wonder: have you ever, when the tide is low, gone there
and taken notice of how beautiful that pool can be?
Perhaps sometime we could go walking together, exploring the
crevices or scanning the sand, stooping to retrieve those
curious and delicate
treasures the waves have
brought.
How do we find these treasures in our grief? How do we continue living and what keeps us alive and hopeful? We have found that for our family turning towards rather than away from the memories and pain nudges us forward in the healing process. For us the journey of grief began about 9 months before Nora died, when we learned that she was not growing as expected in my womb. It has been a journey characterized not only by the loss of our baby Nora, because as time has passed we have had to grieve our lost one year old Nora and next month, at her second birthday, we’ll grieve a new loss, and with that so many dreams.
Grief is perhaps the most painful of life’s challenges, and though we can’t presume that what has helped us along on this journey is what will help you, we’d like to share with you a few things that have brought us comfort.
The first thing is the writing that we have done along the way. Journaling and poetry writing have been useful to us, but beyond that, frequent correspondence with a large number of friends and family during Nora’s life and since her death has allowed others to walk with us and provided a way for us to share even with each other our unique processes of grieving. Compiling all of those writings into a blog format with pictures has helped us to reflect back on our journey, and we are glad that we will have it as a resource for Kali as she grows up and processes her sister’s life and death. Writing has also helped us to keep looking in hope towards the future.
The second thing is the creation of a flower garden, established in Nora’s memory at the one year anniversary of her death. We held an informal gathering of family and friends at our home to which many brought divisions of plants from their own gardens or had purchased plants that in some way reminded them of Nora or our family’s time with her. Over the weeks preceding this gathering, Jason prepared the ground for new plants. This was a richly emotional time for him, and the experience spurred the writing of the following poem, entitled Reiterations:
A father’s love ignores the border
death presents. I worked for you in every way I knew, now
what to do with this: my aimless drive to help, my hoeing the abyss?
There’s nothing you could need from me; I’ll turn my hoe toward earth
and let the rocks and soil absorb my effort, and I'll wait for birth among the
blooming celebrations. I can work on these reiterations.
And so we put together what we can: we scrape
the weeds aside and mark a place where, when it needs to huddle
with the memories, a heart may hide. We’ve caught a hold on changes
in the calendar and seasons, have made spaces full of time: ad hoc
creations. We’ve established these reiterations.
I think it helps a little. Do I need to see reflections of my baby
girl out there exposed to wild, swirling air to keep me from forgetting? Maybe not, but
there is satisfaction in the knowledge that in moments when I need to whittle down
into the quick of loss, or glory in parental, proud elation, I can turn to these reiterations.
Thank you, child! You never read the clock to know the shame
of dallying. Your fingers never curled around a cent. When it was time
for you to go, you didn’t worry, you just went. Your heart and mind and palms were full
of room; your presence was a balm for wounds we couldn’t feel. How many repetitions
of your memory will be required for me to heal? And what’s my hurry? If I sit awhile in a
place, perhaps an insect sipping from a bloom will show the way to freedom from the
hectic expectations. I’ll depend on these reiterations.
I didn’t know I feared a fading of your presence, but I found that when I cleared
the soil space I knew relief, anticipating sprouting seeds. Your memory’s alive, and here
is how I know: I’ve seen it grow! How can this be: while thinking of the years ahead, a
smile? I’m eager to be watching all you were to us becoming what it is, what it will be,
and relishing your place within our family. Our love is strong, so time will find us
living out a leafy incarnation, still repeating these reiterations.
Both the writing and the establishment of the garden helped foster our sense of being part of a wide web of support, and we consider ourselves extremely fortunate. Maintaining meaningful relationships between grieving families and friends or relatives that can never truly understand can be very challenging for everyone, and tragically these relationships often decline after the loss of a loved one, just when they are most needed. If we can manage to love each other well through the most difficult of times, perhaps our hurting hearts will remain open to the gifts that our sorely missed and dearly beloved children have brought to our lives.
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