How does one explain what it is like to have a special needs child? And why are these children so important? People may think, as many do, that a handicapped child or special needs person is somehow valued less, perhaps even loved less even by their family.
I read a book called, “Dragonfly in Amber” by Diana Gabaldon. I believe that perhaps a passage from this book (page 599) helps clarify even though it is not about special needs children, but children in general. In the book two women from Scotland in the 1700’s are talking about the birth of children and she writes:
‘I’ve thought that perhaps that’s why women are so often sad, once the child’s born, ‘ she said meditatively, as though thinking aloud. ‘Ye think of them while ye talk, and you have a knowledge of them as they are inside ye, the way you think they are. And then they’re born, and they’re different – not the way you thought of them inside, at all. And ye love them, o’course, and get to know them the way they are…but still there’s a thought of the child ye once talked to in your heart, and that child is gone. So I think it’s the grievin’ for the child unborn that ye feel, even as ye hold the born one in your arms.’ She dipped down her head and kissed her daughter’s downy skull.
‘Yes,’ I said, ‘Before… it’s all possibility. It might be a son, or a daughter. A plain child, a bonny one. And then it’s born, and all things it might have been are gone, because now it is…..
‘And a daughter is born, and the son that she might have been is dead,’ She said quietly. ‘And the bonny lad at your breast has killed the wee lassie ye thought ye carried. And ye weep for what you didn’t know, that’s gone for good, until you know the child you have, and then at last it’s as though they could never have been other than they are, and ye feel naught but joy in them. But ‘til then, ye weep easy.'
It is not what you expect for your child, but you love them for who they are, not what you expected. We struggle to honor Jamie’s legacy by helping people to understand who he was and why he (not in spite of being special needs, but because of it) was so important. He taught us about unconditional love and grounded us further as people and a family.
Jameson Allen Bates was born June 25, 2004. Jamie-Doodle, was a sweet and gentle soul. He had a hard life, yet a full one. His lifetime was short, but his impact was resounding.
An endowment fund is available through the Four County Community Foundation, called “Jamie’s Smiles,” to celebrate Jameson Allen Bates and to help other special needs children through grants. Thank you for helping us to help his friends, known to him and yet unborn.