2003, my husband and I were blessed with Bennett Ryan, a beautiful
red-headed boy with big brown eyes, tiny fingers and feet. So
perfect, so sweet - we were so in love with him. So in love,
it was not until many months later that we realized that Ben
was not progressing - not moving his head or body, not making
we did make the realization that something was not completely
right, we have been through a lot. It is my hope to share our
story and possibly make it easier for others in similar situations.
Everyone has a story to tell and I am a firm believer that sharing
the good and bad of your own life is the best way to heal, best
way to connect with others and the best way to find out that
we are all alike in some way or another.
I am selfish too. This is not just for others, this is for me
too. I have wanted to be a writer for a long time. I wanted
to be Carolyn Keene (author of the Nancy Drew series) first,
then Erma Bombeck. By sharing our story, I also get to try out
something that seems to sit somewhere inside of me.
I am starting this 6 years into Ben's life, I will skip around
from practical stuff I do now, to some of the early years coping
with it all. I posted the web address "Welcome to Holland" poem.
My mom gave it to me when we first learned about Ben. It did
a great job expressing how I was feeling. I read it again about
a month ago and it has such a new meaning for me now. One line
talks about how you may meet people you would have never met
because of this experience - we have met some of the most wonderful
and caring people through Ben. He seems to attract only the
cream of the crop.
here we go...
me start this off by saying that I am the kind of person who
will make a “to do” list that will include “Plan something spontaneous.”
And I see nothing wrong with that. I received a call two weeks
ago from my son’s case manager. Her supervisor, as part of her
graduate school work, started a non-profit organization, called
HOPE (Helping Outcomes for Parents with Exceptional children.)
mission of HOPE is to promote healthy relationships for parents
of children with disabilities by providing opportunities to
engage in activities within their community. Providing parents
with the opportunity to embrace and renew their partnerships
to be strong for their children and maintaining the family unit.
(Taken from their brochure.)
the call I was getting was to ask if my husband and I would
be willing to go on short notice the next week - Thursday and
Friday to Myrtle Beach. I didn’t say, “Hell, YES!” – I am way
too polite for that, but you bet your ______, I was thinking
it. So Ryan and I drove to Myrtle Beach Thursday morning for
a quick trip to the ocean. And did I mention Thursday was my
birthday? Things just seem to come together sometimes.
receiving the call I started looking up what “they” say about
parents with a child with special needs. Despite a staggering
80-90% divorce rate, that may or not be true, I found good information.
Oddly enough, a few bloggers wrote about marriage this past
week too. Here are a few items worth reading:
Better or For Worse
Laura Marshak, author of Married with Special-Needs Children
(co-authored with Fran Prezant)
counsel couples with special-needs children
Marriage, and all that Good(?) Stuff
think more than anything that made this mini-vacation so great
was that it was spontaneous. We never would have planned a trip
away from the kids in less than a week’s time. We would have
felt guilty taking off from work and asking friends to watch
the kids…but because it was “given” to us, everyone jumped in
to help make it work.
for everyone is hard work. Add any special situation, and it
intensifies the experience. The communication, unconditional
support, respect and friendship all need to be there for a successful
relationship. We all have to take the time to develop it and
then keep it going with very regular maintenance, which can
very happily happen spontaneously! Who knew?