Juggling
schedules in the school year is a challenge, but summer time brings on a new
challenge – how to enjoy the precious few sunny and warm days that New England
offers? We’re happy to share what makes
our family happy.
A brief overview to
paint the scene we are family consisting of Mom, Dad, Alexis (age 9) and
Jessica (age 8). On the outside, we look like an average family with
two working parents raising two kids, so why do I call us atypical? Our kids
didn’t turn out ordinary, they turned out extraordinary.
·
Alexis
– considered deafblind but really low vision / severe profound deaf in both
ears, g-tube fed, undiagnosed genetically, catheterization to fix heart defect
(ASD), developmentally delayed, CPAP user, and a longer list of other super-special
parts.
·
Jessica
– auditory processing disorder, open heart surgery to fix heart defect (ASD), cognitive
disorder not-otherwise-specified, communication delay not-otherwise-specified
and borderline ADHD.
The
constant cadence in the summer for the past six years – Alexis’ extended school year program.
But it’s the flavor of life that we add around her schooling that I think is
interesting to readers.
We like
connecting with families similar to our own:
starting in 2009, we have attended the CHARGE Syndrome Conference. Alexis
is undiagnosed genetically, but she’s most closely related to CHARGE Syndrome,
so we go to learn. The conference is every 2 years and we have families we
regularly see there – and sometimes it’s in fun places like:
 |
| Phoenix Arizona 2013! |
 |
| Orlando Florida 2011! |
We’ve
gone to Acadia National Park
We’ve
gone to East Hill Farm
We’ve
gone to Dream Day on Cape Cod
We like
doing fun things locally too!
We often
have season passes to Storyland NH
Or
sometimes Alexis goes with a caregiver to pet ALLIGATORS:
Or
sometimes Alexis has to have surgery and the only time to arrange it is over
summer break
We
couldn’t do all of this without a great sense of humor. I always end up leaving something important
at home, so we’ve made it a habit to locate the nearest big box store or
grocery store to stock up on the items when we arrive. I do adhere to some of the techniques I wrote
about on WonderBaby.org – and that definitely helps out!!! It takes a lot of the brain power out of
packing because I’ve practiced the routine many times now.
Summers
aren’t always easy. What you don’t see
in what I’ve documented above is the hours to research hotels that will have
enough space, airplane tickets that aren’t at horrible travel times (and won’t
break the bank), arranging and rearranging help to watch both girls during
weeks they are out of school and we’re working and the constant of juggling
medically complex kids. And being
resilient enough to handle nights like these from 2011.
So for
every picture you see of us smiling on vacation, there is probably an hour of
work – but when you get to hear Alexis’ giggle and Jessica’s
squeal of excitement – I know it’s all very worth it.
Hey - forgot to add originally, if you like this article and want to tune into stories from some other awesome families - check out:
1 comment:
They really are the happiest kids! And so lucky to have a mom who will work hard to make them smile. Hopefully we can join you at Storyland this year!
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