Dear Craniosynostosis: A renewal of a letter

Three years ago I wrote a letter to Craniosynostosis. I was so proud to have it published in The Mighty. It is about a conversation that I have with cranio from time to time. Reflecting on what I felt, and how I feel now.  Today, I update it a little.

For Craniofacial Awareness Month, Kati and I have been posting vlogs answering questions about Craniosynostos. Every day on our YouTube channel, and even here on the sidebar. Yep, 30 questions that we have been asked, with answers that come from experience. Some of our conversation drummed up this letter. We decided that I would read this for one of the final vlogs this month. However, in order to do this, I wanted to bring it to the now. I did not want to leave it behind, collecting dust.

So, without further ado. Below the break is the updated letter to Craniosynostosis.

This Is What It Means To Be a Cranio Dad

That time that I was published in The Mighty.  Just been thinking about this letter as of late.  Perhaps it is all the videos, perhaps it is because Cranio Awareness month is winding down… 

anyway….

I AM A CRANIO DAD, (contrary to the subtext of the article) I AM SCARED OUT OF MY MIND, and I hope that you are getting as much out of this month as you can.

This Is What It Means To Be a Cranio Dad

Dear Craniosynostosis,

When I first met you, I hated you with every fiber of my being.  I felt that you took something away from me, and in your own
special way exacted every ounce of fear and inadequacy out of me, and brought
it forward for the world to see.  In an instant, that seemed to take
forever, you seemingly took what was to be one of the most beautiful moments of
my life, and you riddled it with fear, doubt and a never-ending list of
unknowns.

We met on April 10th, 2012 at 8:36am.  That very moment is
seared on my heart and soul.  My wife and I prepared for nine amazing
months for that moment.  I had visions and dreams of what life was going
to be like when my daughter was born.  The illusions of grandeur that
countless books are written about; watching my beautiful daughter grow up,
holding her in my arms, walking her down the aisle, and having the
quintessential father/daughter relationship that every dad longs for. 
However, because of you the moment that these visions, hopes and dreams was to be
realized was instead a myriad of storms, worry and doubt.

I had never known of you, yet
you found it fit to thrust yourself into my daughter’s life with little regard.
Even worse is that after barely getting to know you, I learned that you meant
my sweet little girl was going to be in the NICU.  It was there that I
further learned that there would be many surgeries to come.  Somewhere in
the whirlwind of doctors, nurses and specialist I came to understand that the
picture perfect life that I had hoped for my daughter was not going to exist.

For almost three years you have been making your presence
known.  From the confused look that many, even some doctors, give us when
they first hear your name to the lavender-ish hue that has taken over our
family’s wardrobe, we are constantly reminded that you are there.  You
have caused some to be so stricken with discomfort or lack of understanding
when it comes to my daughter’s appearance that they may recoil, point, or (the
most heartbreaking) move away from her. The reactions that you have caused have
pulled from me grossly misplaced anger to well up and fire to want to burst
forth from my mouth only to be choked back by fighting tears and a forced smile
of understanding.


Your involvement in my daughter’s life has resulted in seven painstaking
surgeries.  Seven times in our lives that minutes have ticked across the
clock like days, and ceaseless prayers have been uttered.  Seven times
that endless days have been taken away from my little girl’s life.  Days
that she should be running around and playing, laughing and learning, not
hooked up to machines recovering from her body being cut open and parts of her
fixed. Seven times that I have been on the verge of a total breakdown, feeling
like a crumpled tissue in a trashcan.  Seven times that I have had to hold
fast to my worries and thoughts to be there for my daughter and the rest of my
family. And countless times that we have walked into a doctor’s appointment
wondering if we were going to be told to get ready for another round. Three
years of vacation time being spent in the PICU, not at the beach, camping,
visiting family, experiencing the world.

For all of these reasons, and the ones that I have not listed… I
have hated you.

However, dear cranio (I can call you that now) over time I have
grown to love you.  Looking back, I cannot fully explain how I came to
this place.  However, I realize that by you taking all of my gut-wrenching
fears and feelings of inadequacy, and putting them out there, you have compelled
me to become something that I may have never been.  You have made me a
better dad.  You have provided me with the chance to see my beautiful and
amazing daughter be strong when she had no choice, letting me know that she is
going to be even more so as she grows. 

Seven times you have shown me that I can, much like my daughter,
be strong.  Seven times you have let my wife rest her fears upon my
shoulders and allowed me to carry the burden for her.  You have not given
me a choice in this, just like you did not give my daughter that choice. 
For three years you have given me time to watch my daughter show us all how
strong she is, and in turn how strong I am.  You have freed me from
meaningless trips to the beach and replaced it with time that I never would
have had.  You have slowed my tongue and increased my knowledge on things
that no parent should ever need to learn, but many would benefit from. 
Seven times, in fact all the time, you have taught me to value the moments like
they are the last, to strive for a minute of every day to contain an hour of
love.

In the forges of your angst, you have hardened me, to be the
rock that my family, and especially my daughter, can find strength, love,
support and compassion when they have exhausted themselves, and any other time
that they need it.  You have shaped and molded me into a strong and
unyielding force, much like you did my daughters skull.  You have formed
me into the father that my daughter not only needs, but deserves.

I am no longer afraid
of you cranio.  In fact, I see your involvement in my daughter’s life, and
in turn my own, as a badge of honor… and I display it proudly.

Regards,
Michael Von Bank
A.K.A
Cranio Dad