This link will take you to a very touching tribute written by a 16 year old to his little sister. It is a very personal essay, about his love for the girl who died at 6 weeks of age, but I have permission to link to it.
I love the phrase that they will put on her gravestone, which I have quoted as the title for this post.
I remember another child, a little one born with a muscle disease. We were never able to get him off respiratory support, every time we tried to stop his CPAP he would deteriorate, and eventually after 6 months in the NICU, he died.
My ‘traditional’, medical response was that the life had been of no value, the baby had never gone home, and never ‘contributed’. But, after his death the mother was so grateful that she had been able to spend time, cuddling and kissing her son, she thanked us for giving him those 6 months, those months when she could care for him, and love him. Six months that have no value when looked at from one direction, but are priceless from another.
That mother taught me a lot; she taught me that the value of a life is not measured in minutes, hours or days. It is not even measured in QALYs! Quality Adjusted Life Years are used in many calculations of such things as the cost-effectiveness of new medical interventions. A life of profound disability and short duration may have very few QALYs, but still have a big impact in this world.