Tag Archives: spinabifida

june 30

I had forgotten.
But reading the young mom’s blog post
about the birth of her daughter,
the diagnosis of spina bifida,
the clash of her emotions,
her fears of the unknowns,
and ultimately her joy ..
(because after all,
she welcomed a baby
into a family,)
I remembered.

I had forgotten
but now I remembered:
the diagnosis,
the way I curled up in a ball for 3 days,
knowing I would go on
but clueless as to how.
And then the gift
of family and friends,
co-workers and community,
coming together to help and to welcome
a baby
into a family,
my joy.

Those of us with special needs babies
have unique memories of their birth days;
they are the last threshold
where anything about our child’s life was familiar.
Soon we enter unknown seas
floating in the dark and fog,
because this map of childhood
is beyond our imagination.
We just keep going,
our love as a compass,
believing as we must,
that this world is also round
and we won’t sail off the edge.

Twenty eight years ago
I entered those uncharted seas.
Parenting my son has been my greatest challenge,
and I feel like I’m not done navigating this world as his parent.
But it’s been a worthwhile journey,
and there is none like it,
and I welcomed this young mom
to what I know will be
an amazing trip.

 


june 17

throwback photo

1-IMG_0661most people look at this photo and see a little guy posing in some crazy-looking sunglasses

I look at this picture and remember a 4 year old, working hard to arrange and hold his paralyzed legs in a position he saw regularly in his relatives and friends

not aware of his sunglasses at all