Craniosynostosis: A Response From A Dad

It is no small, strange thing, the feelings that come to the surface this month. We are forced to pause and reflect upon the path that our lives have been lead down over the last five years. All because of one long, scary, word that we did not know before our daughters birth. Craniosynostosis.

We look back and see what we have all endured. Kati and I, as we became parents. As we watched our daughter defy the odds that she was given, and face greater challenges than many of her peers. With every vlog, conversation, tweet, blog, and post, we have relived some of the nightmares that we barely made it through. There have been more solemn nights over this past month, then during the entire year that has lead up to September.

But, it is not all bad. Over the same time we have been able to look back at all of the accomplishments. We look out our window and see our sweet daughter climbing a tree, and hanging upside down. This child for which we were told may not walk. We listen to the laughter ringing through the house, and the stories that she tries to tell us. This child for which we were told may not talk. Granted, it is in a language that only we can understand, but we understand. We reflect on old movies and pictures showing each and every surgery she has been through. Breathing a sigh of relief we see how far she has come. This sigh is hesitant as we know not the road before us.

Though the fires that have hardened us, the mountains that have climbed, we have been made strong. We have found that our greatest strength has lied within our darling daughter. Resilience, repose, defiance, independence, all these and more are her forte. From her we have drawn much into ourselves. We thrive on the tears and laughter, always the laughter. The pain and discomfort that we feel with this time of recollection outmatched and outpaced by the revelry and ballyhoo of where we are.

Craniosynostosis, you are what WE make YOU.

But, in the stillness of the night, there are still the hard moments. The ones that draw out of us the words that no one else is saying. That compel us to write them down, exposing our fears to the world. Posts like this one, by my beloved, that floors me. We scream into the wind out of frustration, begging for others to relinquish their positivity, for just one moment. To be real about this world that we live in. To become better beacons of hope, real hope, for those that are sailing the uncharted seas with us. Especially to those whom have found themselves in the eye of the hurricane that is this world, per manum Dei.

We cannot live in fear of inadequacy. For all of us that are in this world of Craniosynostosis should have realized…

Our children have taught us better.

Live big, love bigger, and be kind, always

Thoughts of solace…maybe

Ever since we found out that our darling daughter was on
the way I have been plagued with a nightmare from time to time.  This one is much different than the ‘usual’
nightmares that I am graced with thanks to some of my experiences that I had
while deployed. This nightmare entails the days after I shuffle my mortal
coil.  I can physically feel the heart
breaks of my beloved bride and children. I can hear their cries, I can see
their pain.  I go to hug them, to let
them know that I love them and miss them, that all will be ok… and as my arms
pass through them I wake up, still feeling their pain, wanting to scream,
wanting to cry.  The end result usually
entails me getting out of bed, checking on the little ones, kissing their foreheads
and telling them I love them, returning to bed to silently cry as I hug my
sleeping bride.  It is rough, it may be
normal, I am not sure… I am working through it.

This being said, we have been working through a series at
church “What Happens When We Die?” and it has been a bit intense.  Seeing that the recent teaching “What will my
children say at my funeral” did not sit easy on my heart because of the aforementioned
nightmares. But, as is usual, the pastor did an amazing job, and where there
could have been a panic stricken, worried soul sitting in my seat… there was
some solace that was presented.  After
thinking about it, processing it, and thinking some more, below is the
summation of my take-away.  I am not sure
if it is just something for me to reflect on, or if any others out there in the
ether will find comfort in these words.
But, in keeping true to form, I am sharing it.  If it helps you, awesome! If it does not
matter, that is fine as well.  

Anyway, here you go…

We are all mist… our life but a blink. Yet, all of us
leave a legacy behind. For some, this legacy is short lived, almost in vain, as
that is how it started… in vanity.  They
were seeking to further their name, and their ideals with no regard to the
cost, or real impact of their actions.
For others, the lucky ones, their legacy will stand the test of
time.  In striving for this, if we are
trying to make a name for ourselves… our name will be lost in the pages of
time. But if your life leaves a wake behind because you strived to further
someone else’s name, because you were seeking the will of God, it is then that
not only will your legacy be carried on, but your name will be lifted.

One of the truest and simplest ways for us to attempt
such a legacy is through the lives of our children.  What are the stories that they will
tell?  What are the memories that they
will hold onto when you are gone?  Think,
just for a moment about the stores that you tell your children of your parents,
grandparents, great-grandparents and so on.  Think of the stores that have been passed down
as far back as you know.  What has been
said? Now, just for a moment, think about all that you do not know of the
families that surround those stories.  Of
the blips that make it onto the radar only in name.  The actions that you take, the words that you
say, the way that you treat others… all of these will form your story. And all
of them will determine the length or brevity of the legacy that you leave

To assess ones impact, consider what happens when one
drops a pebble in a pond.  The ripples
that are formed carry out, rippling waves in a constant sea of change.  It is with this in mind that you should strive
to make moments in your mist, and watch the wake begin to form behind you.
Watch the ebb and flow that is this sea of life become forever changed because
of it. And find peace in knowing that as your mist falls into the sea that its
ripples will be forever lasting.

I AM A CRANIO DAD, I am scared out of my mind, and my
wake is forming…. is yours?