This Is What It Means To Be a Cranio Dad


Screen Shot 2015-03-23 at 11.14.18 AM 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. In your own special way, you extracted 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 10, 2012 at 8:36 a.m. That 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 every dad longs for. However, because of you, we met instead a myriad of storms, worry and doubt.

I’d 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 there would be many surgeries to come. Somewhere in the whirlwind of doctors, nurses and specialists, I came to understand that the picture perfect life I’d hoped for was not going to exist.

For almost three years you’ve 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 hue that’s taken over our family’s wardrobe, we’re constantly reminded that you’re there. You’ve caused some to be so stricken with discomfort or lack of understanding when it comes to my daughter’s appearance, that they recoil, point or (the most heartbreaking) move away from her. The reactions you’ve caused have pulled from me a grossly misplaced anger.

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 where she should be running around and playing, laughing and learning, not hooked up to machines recovering from her body being cut open. Seven times that I’ve been on the verge of a total breakdown, feeling like a crumpled tissue in a trashcan. Seven times that I’ve 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’ve 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 ones I haven’t listed… I’ve hated you.

However, dear cranio (I can call you that now), over time I’ve 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’ve compelled me to become something I may have never been. You’ve made me a better dad. You’ve provided me with the chance to see my beautiful and amazing daughter be strong when she had no choice, letting me know she’s going to be even more so as she grows.

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Seven times you’ve shown me that I can, much like my daughter, be strong. Seven times you’ve let my wife rest her fears upon my shoulders and allowed me to carry the burden for her. You haven’t given me a choice in this. You’ve freed me from meaningless trips to the beach and replaced it with time I never would have had. You’ve slowed my tongue and increased my knowledge on things no parent should ever need to learn but many would benefit from. Seven times — in fact all the time — you’ve taught me to value moments like they’re the last, to strive for a minute of every day to contain an hour of love.

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

I’m no longer afraid of you, cranio. 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, Cranio Dad

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Follow this journey on Fatherhood: A Test of Faith, Love, Patience & Time.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.


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