My work is as part of the national staff of the Evangelical
Lutheran Church in America. Recently, a colleague led a devotion from Kelly
Fryer’s “Reclaiming the “L” Word” that stuck with me. It focused on Jesus’ calling of the disciples
and his teachings around following him.
In Luke 5, it says Peter and his friends had been out fishing all night
and hadn’t caught a thing. Jesus was on
the shore teaching and when he was done, he turned to the fisherman and said
something to the effect of “If you want to catch something worthwhile, you have
to go into deeper waters.” I’m sure they
were overwhelmed and scared to think about heading out to the unknown, deeper
water with their ill-equipped, tiny boat.
But they did, and their nets weren’t big enough for the catch they found.
As we shared as a staff when God has called us into deeper
waters, my heart started to swell and my eyes glistened. Being the parent of a child with special needs is
being called into deep waters every day. It is the challenge and opportunity to go into deep,
sometimes rough seas. It’s navigating uncharted waters and praying you don’t
crash. It’s feeling overwhelmed and
ill-equipped. It’s trusting that things
will be ok. It’s hoping you are doing
the right thing for your family. Living
daily in deep waters means you’re almost always tired – weary from all the
unknowns, worn-out by the fight against the waves and the current, drained from
the near constant worry, exhausted from caring for the others in your boat.
As a parent, it’s scary and hard to go into deeper
waters. When most people make the choice
to become parents there is a certain realization that this parenting thing is
going to be difficult, but nothing prepares you for the reality of this journey
when it involves a special needs child.
But just like those fishermen who answered Jesus’ call and
challenge to take their boat to deeper waters, the rewards and blessings of a
life lived in deep waters are unparalleled. Deep waters are where treasurers lie. Some of the most beautiful, unique and rare creatures
in all of creation live in deep waters. Being
a tiny boat among crashing waves makes you realize how small you are and how
big the world is…which quickly helps you prioritize what really matters in
life. And maybe it’s because my greatest
peace comes from being by or on the ocean, but I don’t think there is anywhere
more beautiful than the view from deep waters.
Being the mom of a child with special needs has brought
blessings and rewards that parenting a child who is typical simply does not. My love for my children is equal, but there
is undoubtedly something special in raising Connor. We celebrate more. We snuggle more. We forgive more. We marvel more.
This is not where I thought my journey of parenthood would
lead me. I am brought to tears
regularly, equally from worry and gratitude. There are many days I am in awe of
my special boy, a true unicorn of the deep waters. There are many days I wish Joubert Syndrome
did not exist and yearn for a simple life near the shore. I am thankful daily for those in the boat
with me and for those who cheer from the shallows.
I am tired, but oh how my nets are
overflowing.
