Noah's specialized diet results in time consuming endeavors in the kitchen. Nearly eight years later Noah still cannot eat anything else other than purees, puddings, cheesecakes and meltables. And because of his high tone and athetoid movements Noah is on the move all day - burning lots of calories. He's on his own individualized exercise program!
Noah's treating providers have always encouraged high calorie foods,
healthy fats, no preservatives, no artificial dyes, and organic to give
his brain optimal opportunity to keep his mind and body as healthy as
possible. So my chef skills are sometimes on hyper-drive and I'm always
looking for yummy things that Noah would enjoy.
Now that we're into fall, all those warm and cozy meals are on my
field of vision. One day I woke up wanting a culinary challenge -
(really because I don't have enough challenges to my day right?) In hindsight I was likely looking for a diversion to the outside stress that comes along with special needs parenting.
What's something that I could master? Julia Child's Beef Bourguignon
came to mind. So I googled it. I spent way too much time peeling pearled
onions and braising beef... but I did it anyway. It was okay, I mean I
followed the recipe - it turned out - but it wasn't like the choir of
angels I thought I'd hear singing when I took my first bite. Noah ate
it, he liked it just fine, but I could tell by his expression that it
was just mediocre in his world. Luke did his best to fish out the
mushrooms and anything that could be remotely identifiable as a
vegetable. Chris - easy to please had seconds because he's just that
kind of cool guy.
Yet, even though I did everything right in the
recipe I expected so much more, and I felt in some way incredibly let
down by Ms. Julia Child.
I decided to give it a second go. But this time I
decided to follow my own recipe. I took elements from Julia's recipe.
I still braised my beef, I ditched those time consuming pearled onions,
and instead I added celery, homegrown gold beets from our garden,
garlic, less carrots, garlic, only 2 sliced mushrooms, I kept the bacon
but changed Julia's ratio of organic red wine to beef broth, increased
Julia's recommendation of flour and threw in a bay leaf and said you're
And then angels sang at the dinner table.
Now you're all probably out there thinking why on
earth have I followed along about Noah's mommy discussing her attempts
at Julia Child's Beef Bourguignon? But really I do have a point here, I promise.
Sometimes we're always itching to follow in
someone else's "personal best" that we fail to consider that we each
have our own personal best within us. Why isn't it okay for us to
follow our own recipes in life? And have them be the best for us? The
same lessons carry over onto much of the special needs parenting
Why must we measure our children against another child's personal best?
Against the recipe of milestone timelines that therapists dish out?
Compete for the same success one family found doing a particular therapy
or treatment? Allow others to tell us how our recipe should look like?
I swear if I have another therapist tell how they think I should be
putting my typical child in public school to offer him the experiences
of a "normal" childhood implying because he has a severely disabled
older brother that we've somehow short-changed his life - or insinuate
that because I don't take Noah to a all day camp where they push him for
8 hours a day, cause him to cry and be in pain all in the name of
"therapy" I'm libel to explode in verbal direction that I'm sure they
Our recipe can look like our own. And that's so
awesome. In fact it's more than awesome, because we're being
authentically true to ourselves and to our own children's needs. Our
form of preferred therapy for Noah can look different from traditional
forms or methods, or philosophies about parenting or teaching both a
typical child and a profoundly disabled child alongside each other can
look different than sending our children off to public school. My recipe
and your recipe can look similar or different, but the fact that they
aren't exact is a wonderful and beautiful thing.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.