When I was pregnant with Evan I had to have an MRI. I dreaded the day and did all I could to keep my mind off of it. On the day of the appointment Mark and I drove to Cardinal Glennon and checked in. It is crazy now how routine that act feels now, 5 years later. Once in the room I stood next to the machine. I was told that I would be able to go in feet first. That my nose and eyes would be outside of the machine. As the table began to shift inward I could feel my heart race and panic set in. It was hard to breath and I wanted out. It took all I had not to push that exit button. Deep breathing, mind over matter, closing my eyes and pretending I was on a beach....I tried it all. I kept reminding myself that Evan was fighting a battle. How silly it was for me to be freaking out over a simple scan. I turned my focus to God. He had chosen me to Evan's mom. If Evan would face challenges surely I could make it through this hour. And then I felt it. The table began to shift. I was drawn further into the machine. I strained my neck and looked back as far as I could. It was hard to breath. My eyes burned as I looked upwards and back as hard as I could. What felt like 5 minutes was probably 30 seconds. Shifting. Movement. I was out up to my chin. Relief. My pulse slowed. Deep breath in, deep breath out. Relaxation. Ahhhhh!! I can do this! tick tick tick....only to be pulled back in 5 more inches. This went on for an hour. Panic followed by calm. Over and over. Once I heard the tech say "You are all done, lets get you out" I was mentally exhausted and I wanted to crawl into a ball and cry. It was 60 minutes and I felt broken and drained.
Driving home that day the reality set in. This was our new normal. CT scans, MRI's, doctors, hospital stays, medical bills...this was us. Time passed. Evan was born. He proved so many doctors wrong. He began tracking objects. He began gaining weight, lifted his head and soon sat up. He pulled to stand, fed himself finger foods. One milestone met, then another. Slowly and on his own time...but met none the less.
Soon after his ETV we heard him coo. His eyes were alert. Calm in the storm. Daily head circumference checks showed his head circumference continued to grow. He would need a shunt, the ETV had failed. Panic. Surgery was finished. He woke up, smiled at mark and reached out and touched his daddy's face. Peace fell over us.
A year went by. We celebrated Evan's one year shunt anniversary. Shunts are man made. They clog, valves break, and parts crack. At the one year, 7 month mark Evan's shunt failed. Surgery was scheduled, we checked in to that all to familiar hospital and a revision was done. We were home the next day. It NEVER gets easier. It becomes more familiar. You know what to expect (as much as one can) and with each victory, the trails feel easier to take.
And there you are, coasting along. An ordinary day becomes extraordinary, when Evan says his first word; "Mama" followed the next week by "Emma." Within two weeks we have several words and a two word combination. He does it all with a tiny scab under his nose. That tiny little pit below his nose that I always noticed and wondered about, was now draining and scabbed. 4 Years and 4 months with no issues and suddenly something had changed. I googled, and read medical journals online at night when I couldn't sleep. They all lead me to the same conclusion. Evan's Nasal Dermoid Cyst was infected. I emailed the Neurosurgery department on a Wednesday. I was told that Evan's Neurosurgeon was out of town, but that they would call as soon as they heard back from him. On Friday I received a call. They wanted us at Glennon at 5:30 am for a CT scan. My heart sank. I knew. I just knew.
Evan's cyst is rare. 1:30,000, they say. Even more rare are cysts that have an intracranial extension. Our rare little gem has a oval sized cyst in the center of his nose that extends into the cranial cavity, just under his brain. Leaving this cyst and nasal tract in place would mean that Evan would always be at risk. Our team of doctors immediately met with us. Our ENT explained his portion of the surgery. Our beloved Neurosurgeon explained his options. I took deep breaths, and I kept my hand firmly on Mark's knee. I was back in that MRI. With one breath, I wanted to panic and run. Two breaths later I let the clarity of this man's knowledge and experience join with my faith that while ALL of it seemed so out of control, God was firmly holding us in the palm of his hand. He was there on the day Evan was diagnosed. He was there on the day of that MRI. At Evan's birth and he was there every single day of our NICU stay. That all to familiar calmness fell over me. And then it happend.
While Dr. Elbaba spoke about the location and the surgical options, Evan climbed down from my lap and walked over to where he stood. He leaned in for a hug. Evan doesn't hug doctors. In fact he doesn't even make eye contact. His doctor rubbed his back and said "Hey buddy, you and I have been through a lot. We go way back don't we?" Evan plugged his ear and made his way back to my lap. While my heart was breaking for this sweet little boy who has had fight through so much, there it was again. Faith restored. Relief. It didn't mean it all went away, or that the doctors changed their minds. It was simply peace over the situation and the feeling that we would move forward, as scary as it was, because God would pull us through. Pulled in towards fear, or pushed out in jubilation, God would hold Evan in the palm of his hand.