I was asked to talk about my experience of transplantation from a parent's perspective. This is what I said:
Our story began almost ten years ago with the dramatic arrival of our son Rory. I say dramatic because Rory in his wisdom, managed somehow to arrive without any kidneys. And as Oscar Wilde once said: to loose one may be regarded as misfortune, to loose both looks like carelessness.
Thrust as we were into the weird and wonderful world of renal absence, we began a vertical learning curve that saw us training to tell our calcium inhibitors from our creatinine. To anyone who hasn’t experienced life with a child on dialysis, your entire family is effectively placed on pause mode. We struggled with the art of deferral, while we put holidays on hold, scaled down birthday celebrations, missed family weddings, chose between Christmas Eve or St. Stephen’s Day for dialysis and generally just, well, waited.
Sometimes we had to wait for his temperature to come down, sometimes for the wheezy patch to pass but more often we were just waiting for him to simply gain weight. The magic transplant target of 10kg invaded our every waking hour; while we celebrated each gram gained and mourned each one lost.
When we hit that target, our fixation moved from waiting by the weighing scales to waiting by the phone. Life on the transplant list brings a whole new quality to the art of waiting: it’s a potent mix of impatience and fear. As adults we can reason with this we can adjust, but for our kids it is a very big ask. They only get one childhood it’s hard to ask them to spend it waiting.
Transplantation has re-pressed the play button on our lives; we now bask in the brilliance of everyday normal, thinking nothing of sleepovers in granny’s, booking holidays or taking trips to the swimming pool - things that would have previously seemed as unattainable as a weekend mini-break on Mars.
Although this waiting was excruciating, we were blessed with some wonderful company: the renal team in Temple St. They hung in there with us, lightened our days with random acts of kindness that left us lost for words. For all the cups of tea and slices of hot buttery toast, the phone calls just to see how we were getting on, the birthday cakes, the gentle but firm cop-yourself-on pep talks and the belly laughs, we thank you. Not only have you helped us through our pause mode, you have also taken us out into play mode again. At a time when working in the Irish health system can best be described as a tough gig, you have continued to deliver the type of excellent care that changes lives. We salute your exemplary professionalism and your extraordinary humanity.
They say it takes a village to raise a child, I am profoundly grateful that our children had the great good fortune to find themselves in the vibrant, caring village that is Temple St Children’s hospital.
But just as it takes a village to raise a child, it takes a society to run a transplant programme; we must all play our part in reducing the waiting time for the children and families who are currently in pause mode.