What’s in a birthday photograph? (And a few notes in a diary…)
Four years after Lucia’s third liver transplant, tests showing significant anaemia, requiring blood transfusions. More tests discovered bleeding from oesophageal varices. Endoscopy done with sedation, no longer the general anaesthetic of pediatrics – little preparation and much mental stress. Varices repaired, banded, at least for now.
Still in hospital with enlarged stomach. Diagnosed as constipation. “No,” Lucia said, “I think it’s fluid.” Two days later, after more patient, but stressful insistence, another scan proved her right and the fluid was drained.
Lucia out of hospital, and home for her birthday. Her sister made the cake.
Back into hospital that evening.
Revising, from a hospital bed, for chemistry ‘A’ level exam. A resit. School offer to arrange for her to sit the exam at home, or in hospital. Not up to it.
Waiting for news of a scholarship to Cork University (offered – delight all round). Entry depends on exam results.
Sadly, no mercy given for mitigating circumstances so it wasn’t to be.
Three days after her birthday, Lucia was due to attend a garden party in Buckingham Palace. Invitation for Lucia and “one other”. No question for Lucia, the other would be her sister, delighted to accompany Lucia anywhere, even with all her ambivalence about a royal invitation.
Unable to attend.
Rumours, half hints, overheard sentences between medics, about a possible fourth transplant. Lucia longing for her pediatric medical team and their straight talking. Longing for honest information and inclusion. Concerned, not only for the implications for herself but the likelihood of her family, especially her sister, starting to explore again the options for being living donors.
All that. And so much more.
Do you see it in that snapshot of a 19 year old’s birthday, and the delight at her sister’s cake?
What do we really know about the lives of so many around us? What lies behind their smiles, their actions, their words? What are they waiting for, fearful of, hoping for?
As we go through another birthday without her, we are, and always will be, grateful beyond words for the twelve extra birthdays we shared together thanks to the kindness of strangers, organ donors and their families. We don’t know how or when they had the conversations that led to their consent for that precious gift; we can only hope the decisions were made in easier times and not in the last moments and under deep stress.
Those decisions gave us the opportunity for the shared joy in the photograph, for the love that baked a cake, and the warmth and laughter of the day we could share together. Today, as any other day, we are learning the gentle strength of gratitude…