2020 – it has been heartbreaking to re-read all this. One of the hardest times of our lives — 2003-2004, as well as 93-94, 97-98, 2010, 2016-2019. Autism, deafness, and this possible Pans/Pandas disorder…. so much heartbreak. So grateful Chris (and Ryan) are doing better now. Here Chris had to wear a helmet as he was hitting his head on all surfaces…. that lasted a few months.
Comments: a poem about Chris, it’s been a while.
Felt good to write something. I think I got a lot out this way.
to say goodbye to you would be so sad
the child of my youth
all my life I dreamt of your arrival
it made my heart so glad
we waited years for you
you were born and we clung to you so tight
checked you in the night, looking for your breath
we were so careful to do everything just right
our firstborn son, you began to slip away
we didn’t notice at first, just thought you were shy
or quiet or the deep intelligent type
when you ceased your speech at 2 I thought I’d die.
to see you hurt yourself, the precious skin and self
that formed inside of me, then was born
is catastrophic and deadening, the greatest tragedy
of our lives, the event we always mourn
more than autism itself, the pain, the violence
that you would be in such pain,
the sound of fear is perhaps worse than just the silence
that we would hear if you were just happy but quiet, playing in the rain
like you used to do out in the pool, when you were five
the rain beat down but you were happy with your symphony
of bubbles that rose above you like a crown.
you always loved the pool, the bath, the river, more than any pony
that any other boy would like
we were sad at your difference at times but loved to watch you smile
and now to hear your laugh instead of your cry
would answer our prayers, at least for a while.
The whole family needs to be kept safe and strong
whatever it takes to help you all grow
and to also keep the girl and little boy growing up in health
I pray an answer comes soon, that we will know.
It wouldn’t really be goodbye, if it comes to a new home
it would be a place that could help you thrive
in your own way, in your own time
if that is the decision that is to arrive.
We would still see you often and love you so much
though of course we hope the answer is that you stay
whatever happens I know that the Lord is with us
And will give us strength to face each day.