Well that wasn't expected...

On the 28^th of this month, we will officially be THREE YEARS post op, from Nathan’s Cranial Vault Reconstruction surgery. Three years?!?! There are times when it feels like we were fighting with insurance just last week and now we’re three years post op. Wow! I guess the time goes by, whether you want it to or not.

We made another trip to, Dallas, Texas and followed up with Dr. Fearon in 2013, when Nathan was one year post op. We received the amazing news that Nathan was doing wonderfully and we didn’t need to follow up with Dr. Fearon, until Nathan was 5 years old or in 2 more years. Just like the year before it, the next two years flew by and here we are today.

We’ve scheduled our 3 year post op trip to, Dallas and it is a trip we genuinely love and look forward too. ( Our family loves Texas! ) Before we go see Dr. Fearon though, there are a couple of things on his ‘To Do’ list that we have to complete. One of those things is for Nathan to receive a brain MRI. The MRI looks at not only the brain, but also Nathan’s skull. Until Nathan’s bones have finished growing, he will frequently be receiving these scans to be sure his sutures, ( or plates of his skull ), are growing and healing accordingly and that the sutures haven’t fused together prematurely, again.

Nathan had a brain MRI preformed this past Tuesday, March 3, 2015. Though the MRI itself went flawlessly, the MRI showed something completely out of left field; something we weren’t expecting at all! In the simplest of terms, the base of Nathan’s brain is not where it should be. Nathan’s brain is dipping below its skull and pushing against his spinal column.  His brain is literally falling outside of the protection of his skull. The formal diagnosis is a Chiari I Malformation. 

So what now? We are currently waiting to speak with a pediatric neurosurgeon at our local hospital to decide what to do from here. There is a huge possibility, that Nathan could need surgery. They could remove the c1 of Nathan's spinal cord, so that the brain doesn't place any pressure on the spinal cord. Or they could decide that since Nathan is asymptomatic to leave everything alone and just monitor him. Regardless of what happens, at the end of the day there is part of Nathan's brain, that isn't where it should be. 

God has gotten us through brain surgery before and if need be we know He will again. Until He opens a door, we’ll praise Him in the hallway. (:

I am the cliche'...

I’ve always felt pity for the adult who says that a child is the strongest person he or she knows. How unfulfilling of a life, must that adult had that a child is the strongest person they know.

I’ll make the assumption that the imaginary adult I speak of is at least 30 years old. Has at least graduated high school, if not college, grad school even maybe. Traveled possibly…knew more than one language, okay. Has a current passport somewhere, though it might not be accessibly ready, nor even contain one stamp. This person has a passion and has started working their way through their passion. They have life experience. And maybe, not always, but for the most part has enjoyed life and what it has brought their way.

The imaginary child is no greater than 5. Has maybe walked a pre k graduation, complete with miniature cap and gown. He has no true-life experience, except for maybe a character building session on the playground with a bully or two. He has traveled to Disney World and possibly met the mouse, but that would be the highlight of his travel experience. Passion in his world consists of the Backyardigans, Wonder Pets or Caillou.

So again, I ask of you…how is it possible that the strongest person an adult could possibly know, be a child?

I am the cliché. I heard a song this week for the first time. ( If you have read any of blogs, you will notice a consistent link to music in almost all of them. ) Fighter by Gym Class Hero’s is by far my favorite song of the moment. It’s my little boy. It’s my fighter. And he by far, is the strongest person I know. 

Two Months. Two Days.

I stare at the wall that is ever so daringly taunting me. I have imagined since January 27^th what it would be like to stand on the other side of this wall. My mind has gone to great lengths to imagine what was on the other side. Yet my subconscious, like a dog’s choke leash, has only let it venture to what it has presumed to be safe distances. Don’t get to far ahead of yourself. I don’t know the engineering qualifications of Jericho, but this has been my own personal Jericho.

Does the sand burn your skin as the wind blows, like it does on this side? Or is there even sand at all. Is there even a need for the mirage that I swear I see or does water flow freely? Hydration, not even daring to be an issue. And nourishment. Must I hunt on the other side or does a buffet table of only the finest delicatessens await me?

Two months. Two days. We’ve resided on the inside of our Jericho, for just as long as we resided on the outside of it. I wish I could say that hours and days go by and not once does the thought of cranio enter my mind, but that is so far from the truth. I guess I should be grateful that my subconscious only let me venture only so far as to wonder what was on the inside of these walls.

In the same way that a new tattoo is permanently with you for life, so is cranio. Seen or not, it is there. It is elusive at times, but its presence is always known. It announces it’s consistent arrival dutifully every night as I shampoo Nathan’s head. The few times he snuggles with me on the couch and I feel every piece of fabricated metal. And especially when he reminds me that he’s 100% boy as he trips, falls, bumps his head and I instantly check for pupil response and that every piece of that fore mentioned fabricated metal hasn’t shifted locations.

Two months and two days. We’re ‘on the other side.’ Yet just because we’re on the other side, doesn’t mean this side doesn’t have it’s challenges too. We’re just learning to live again. Learning to live again, with these challenges. 

Easter...

It goes without saying that Saturday, July 11, 2009 is a day in which my life completely changed. Only 2 hours had passed in the wee morning that Saturday, but I heard something that forever changed my heart, my world. I heard the whimper and faint stretch for air from a little boy that forever compromised who I was and who I am today. I expected this change and welcomed it with every fiber of my soul. What I didn’t expect was how this solitary moment would change how I felt and viewed my creator.

I was incredibly blessed and fortunate to be raised in an overly loving, supportive, Christian home. My parents knew of each other through high school, but it wasn’t until a church function that two high school students went from acquaintances to more than just friends. Sunday mornings and church were synonymous with Saturday afternoon’s and Florida State football for my family. A question was never raised of if you were going. Why ask a question, that you already know the answer too? Yet, Nathan’s arrival and the events of this past year have eternally molded my heart into a love and adoration for my heavenly father, which I never imagined could exist, one that I didn’t truly understand the depths of.

The week of our first Easter with Nathan, I would watch him play and wonder to myself, ‘How could I ever send him to die?’ While the thought lingered on grossly morbid and disturbing, it was something that shook me to my core and challenged me in ways I had never been challenged. I watched Nathan the rest of the days leading up to Good Friday and Easter Sunday and this thought lingered still. I imagined the fate of a world, literally sitting on my precious 9 month olds shoulders. It was something I couldn’t bare to contemplate or dream of. Yet, it made me instantly aware of how great and immeasurable my Father’s love is for us. Sending our son to die is something that I couldn’t do. Thankfully the fate of the world wouldn’t depend on me.

I marveled at Nathan yet again with that same adoration recently. Except this time, it was on a Wednesday morning, not a full 24 hours after his surgery. A surge of overflowing love and pride filled my heart for our little boy, for our little fighter. I wondered again, ‘How much He must love us.’ 

And I realize just how beautiful you are,

And how great your affections are for me,

Oh how He loves us…