How does one explain what it is like to have a special needs child? And
why are these kids 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 just 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 has been established through the
Shelby 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.