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.

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 exacted every ounce of fear and inadequacy out of me. You 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. You corrupted it with doubt and a never-ending list of unknowns.

We met on April 10th, 2012 at 8:36 am. 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. Someday walking her down the aisle to join her beloved. Having the quintessential father/daughter relationship that every dad longs for.

However, because of you, the moments that these visions, hopes, and dreams became instead a myriad of storms, worry, and doubt. I had never known of you, craniosynostosis, yet you found it fit to thrust yourself into my daughter’s life, with little regard. Even worse, after barely getting to know you, I learned that you meant my sweet little girl was going to be in the NICU. A place of nightmares for all new parents. It was there that I further learned that there would be many, many surgeries to come.

Somewhere in the whirlwind of doctors, nurses, and specialists I came to understand something. That the picture perfect life that I had hoped for my daughter was not going to exist. I fell weakly to my knees, and cried, for hours because of this. Not out of some injustice to me. No, purely out of what I thought you were stealing from my daughter.

Your presence, craniosynostosis, is evident.

For almost six years you have been making your presence known.  The confused look that many, even some doctors, give us when they first hear your name. The lavender-ish hue that has taken over our family’s wardrobe. We are constantly reminded that you are there. That you will be there, forever.

You cause some to be stricken with discomfort, because of her appearance. Their lack of understanding causing them to recoil. Or, the most heartbreaking, move away from her. The reactions that you have caused have pulled from me grossly misplaced anger. A fire that burns with the fire of a thousand suns longing to burst forth.  Only to be choked back by fighting tears and a forced smile.

Your involvement in my daughter’s life has resulted in nine painstaking surgeries. Nine times that I have had to face the veneer of the same room and the macabre that it entails. My God, how much I hate that room. Nine times in our lives that minutes have ticked across the clock like days, and ceaseless prayers have been uttered.  Our hearts never beating out of fear of breaking. Nine times that endless days have been taken away from my little girl’s life.  Days that she should be running around and playing. That the world should be filled with the sounds of her laughter. Carefree days of blessed childhood. Not hooked up to machines. Recovering from her body being cut open and parts of her fixed.

Nine times that I have been on the verge of a total breakdown, feeling like a crumpled tissue in a trashcan.  Nine 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. 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. Nearly six years of vacation time being spent in the PICU. Not at the beach, camping, visiting family, experiencing the world.

I needed to teach my three year old son to say your name. Craniosynostosis. A name that I could not say for the first six months of knowing you.

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

But six years is a long time, dear craniosynostosis.

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 countless chances to see my beautiful, amazing, daughter be strong when she had no choice. Letting me know that she is going to be even more so as she grows. Nine times you have shown me that I can, much like my daughter, be strong.  Nine 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 nearly six 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.

Nine times, in fact all the time, you have taught me to value the moments like they are the last, to strive for every minute of every day to contain an hour of love.

Hearing my three year old son say “Craniosynostosis” makes me smile. Seeing how he loves his sister eclipses so much doubt from my mind. Slowly, but surely, those illusions of grandeur that I thought were lost, are coming back. Re-framed with you in mind, but even more amazing.

Craniosynostosis, you have not broken me, or my daughter.

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,

 

Cranio Dad

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