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.

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

Our 5th September

It’s hard to believe we are already celebrating our 5th September as a family affected by a child with craniosynostosis. Celebrating because there are so many mini-milestones that became so important, new struggles that have been overcome, and constantly new obstacles that only God knows how we grow and move ahead through them. Zoey has brought an amazing, unique perspective to my world. She never stops trying, never gives up, and faces every struggle head on. In her mind there is never another option but to make life work so that she can participate to the max. She has inherited every ounce of stubbornness from both my husband and me, and has used it all in the best possible ways. She helps me to appreciate what I might have otherwise taken for granted, and encourages me to find new pathways when the common routes don’t seem to work for us. So yes, today we kick off our celebration of another September dedicated to the awareness and acceptance of craniosynostosis. Join us and maybe learn something new!

What is Craniosynostosis?

If you have not had a chance to watch this video where I try to explain what craniosynostosis is in such a way that many more could understand, please give it a view!  I am working on some follow up videos where I will tackle other aspects of cranio so any feedback that I can get now would go a long way in making the other videos even better.

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

Shelby Blondell – My name is Shelby Blondell, a 22 year… | Facebook

It is my honor to spotlight this incredibly talented musician.  Shelby Blondell just posted her story about what it was like for her to grow up with craniosynostosis.  She provides insight to many what it was like for her, and how it has shaped her life.  

Please give this a read, like it, share it, and send her some love.

I AM A CRANIO DAD, I am scared out of my mind, and it is things like this that help me understand (a little bit more) about what my daughter is and will be going through.

Shelby Blondell – My name is Shelby Blondell, a 22 year… | Facebook

This Room

This is one of the hardest parts of being a Cranio Dad. This room.

This 14 by 14 prison cell of emotion that is called a surgical prep room is in the forefront of oh so many nightmares that I have had since my daughters birth.  As a Cranio Dad, I find myself all too familiar with rooms like this.  Though the rooms may change, all that is entailed with it does not.

This Room

After all of the prep, the crying the night before, the early morning trip to the hospital, the hustle and bustle as all of the doctors and nurses prepared for what was to come, even the goodbye hugs and kisses, this room is the hardest part.

There is a sudden, unwelcomed stillness that enters the room.  Your body feels the way the sound echoes off the walls, as it surrounds you. Where there is a sudden wave of calmness, your mind will not allow it to en-robe you.  There is the sound of your soul screaming for the world to “SHUT UP” as the silence becomes all too loud and raw.  You can hear the sound of your heart shattering under the weight of it all. Your stomach tightens, and you try to catch your breath as your body shudders. Your eyes, fixed in a desperate stare, look where the crib was and the moments before this instant playing back like an aged cellophane movie.

Just moments ago your whole life sat in a brightly colored cage of a crib.

With utter, heartbreaking innocence she played, laughed, blew you kisses, and nuzzled your face as she tiredly uttered “dada”. Heart beat after heartbeat you relive those moments, fighting the brutal differences your senses are telling you exist now, in this room.  Then, once your heart cannot take any more, the moment disappears, like the ending of a movie.  The constant flux of transition between the memory and reality in a bitter battle to the death, as the wages of this war take toll on your reason.  Then in a flash, it is all gone.

Wave after wave of pain, fear, and stress untie from your overwhelmed heart, mind, body and soul; you feel as though you could crumple onto the floor like some miswritten, discarded note. The unearthly sound undulating from your throat as your soul and body cry out, yet it is muffled by the tears pouring fourth. Your new, strange sound has been added to the echo.

You search all of your being for some substance, something to allow you to make it through endless time-consuming, relentless ticks of the clock that is not in the room. No “tick, tick, tick” expressing the seconds that are passing, time that seems empty without that small little part of you, that part that is most of who you are. Then, like the floodgates bursting, you cannot contain it anymore, and the sound your throat has been straining to hold back ruptures past your dry mouth, and your scream that you only heard in your head launches into the silent room.

You collapse into a chair, weakened by the emotions wracking your body.

You find yourself there, in that moment, for what seems like an eternity.

However, over time, you wipe your face, discarding the tissue. That tissue taking your place in that room, discarded on the floor. You stand, not sure if your legs will hold you. Knowing that all too soon you must muster all you have to go out to yet another room. A room filled with many other parents experiencing some version of this fresh hell you find yourself in. You find strength in the part of you that left that room what feel like forever ago. You cry a little bit more because that is not how it is supposed to be.

After awhile, you raise your head and leave. Uttering a prayer that all will be okay. Hoping that, before you know it, this surgery will be complete. That you will again have a room filled with laughter, blowing kisses, hugs and a sweet little face nuzzled against yours uttering the sweetest words you will ever hear, “dada”.

I AM A CRANIO DAD, I am scared out of my mind, and…………………

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This is something that I wrote the day of my daughters first Cranio Surgery.