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 ownspecial way exacted every ounce of fear and inadequacy out of me, and broughtit forward for the world to see. In an instant, that seemed to takeforever, you seemingly took what was to be one of the most beautiful moments ofmy life, and you riddled it with fear, doubt and a never-ending list ofunknowns.
We met on April 10th, 2012 at 8:36am. That very moment isseared on my heart and soul. My wife and I prepared for nine amazingmonths for that moment. I had visions and dreams of what life was goingto be like when my daughter was born. The illusions of grandeur thatcountless books are written about; watching my beautiful daughter grow up,holding her in my arms, walking her down the aisle, and having thequintessential father/daughter relationship that every dad longs for. However, because of you the moment that these visions, hopes and dreams was to berealized was instead a myriad of storms, worry and doubt.
I had never known of you, yetyou 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 meantmy sweet little girl was going to be in the NICU. It was there that Ifurther learned that there would be many surgeries to come. Somewhere inthe whirlwind of doctors, nurses and specialist I came to understand that thepicture perfect life that I had hoped for my daughter was not going to exist.
For almost three years you have been making your presenceknown. From the confused look that many, even some doctors, give us whenthey first hear your name to the lavender-ish hue that has taken over ourfamily’s wardrobe, we are constantly reminded that you are there. Youhave caused some to be so stricken with discomfort or lack of understandingwhen it comes to my daughter’s appearance that they may recoil, point, or (themost heartbreaking) move away from her. The reactions that you have caused havepulled from me grossly misplaced anger to well up and fire to want to burstforth from my mouth only to be choked back by fighting tears and a forced smileof understanding.
Your involvement in my daughter’s life has resulted in seven painstakingsurgeries. Seven times in our lives that minutes have ticked across theclock like days, and ceaseless prayers have been uttered. Seven timesthat endless days have been taken away from my little girl’s life. Daysthat she should be running around and playing, laughing and learning, nothooked up to machines recovering from her body being cut open and parts of herfixed. Seven times that I have been on the verge of a total breakdown, feelinglike a crumpled tissue in a trashcan. Seven times that I have had to holdfast to my worries and thoughts to be there for my daughter and the rest of myfamily. And countless times that we have walked into a doctor’s appointmentwondering if we were going to be told to get ready for another round. Threeyears 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… Ihave hated you.
However, dear cranio (I can call you that now) over time I havegrown to love you. Looking back, I cannot fully explain how I came tothis place. However, I realize that by you taking all of my gut-wrenchingfears and feelings of inadequacy, and putting them out there, you have compelledme to become something that I may have never been. You have made me abetter dad. You have provided me with the chance to see my beautiful andamazing daughter be strong when she had no choice, letting me know that she isgoing 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 myshoulders and allowed me to carry the burden for her. You have not givenme 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 howstrong she is, and in turn how strong I am. You have freed me frommeaningless trips to the beach and replaced it with time that I never wouldhave had. You have slowed my tongue and increased my knowledge on thingsthat 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 likethey are the last, to strive for a minute of every day to contain an hour oflove.
In the forges of your angst, you have hardened me, to be therock that my family, and especially my daughter, can find strength, love,support and compassion when they have exhausted themselves, and any other timethat they need it. You have shaped and molded me into a strong andunyielding force, much like you did my daughters skull. You have formedme into the father that my daughter not only needs, but deserves.
I am no longer afraidof you cranio. In fact, I see your involvement in my daughter’s life, andin turn my own, as a badge of honor… and I display it proudly.
Regards,
Michael Von Bank
A.K.A
Cranio Dad