I am alive.

Is the baby crying? I opened my eyes. Why is it so bright? I closed my eyes. Shuffling noises. Pain. No, that is not a noise that either of our children make. Where am I? I opened my eyes again. White hospital blanket. I blinked. IV in my arm. Nurses.

I AM ALIVE!!!! 

I have never been so happy to wake up in my entire life. It was the most immense feeling of gratitude. I wondered how many days had previously passed where I had opened my eyes without gratitude? From now on, I knew, I would feel grateful for every single day that I was blessed enough to simply open my eyes.

I need to see my husband,” I told the nurses over and over. “His name is Josh; please go find him.” I couldn’t wait to see his face and show him I was still alive!

After what seemed like an eternity, someone finally escorted that handsome man to my bedside. One of my nurses actually had to keep me in the bed; I couldn’t get into his arms fast enough. That embrace was everything. It said I’m still here, I love you, I’m alive, and everything really is going to be okay. The only words that came out of my mouth, though, were “God is not done with me yet.”

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There were so many small victories worth celebrating. Surgery had been successful; it had only taken 4 hours, rather than the anticipated 6. 100% of one meningioma was removed, and 85% of another. Initial CAT scan and MRI showed minor inflammation and no signs of brain bleeding.

I did not have my blood supply severed. I did not have a stroke or seizure in the Operating Room, I did not have any known deficits. It was the best case scenario.

For the first night, I was kept in the Intensive Care Unit (ICU) as my husband (aka Gatekeeper) kept a close eye. We have a huge family and a wide circle of friends, so naturally the room was flooded by visitors. My dad and stepmom even flew in from Kentucky to be with us on surgery day, and help with our boys.

When I remember those first few days after waking up, I don’t remember pain, numbness in my left side, or fear of what might come next. I only remember the LOVE; holding my dads hand like I was a child again; a dozen beautiful white roses; sleeping with Buddy, the bear my boys had made to keep me company; my cousin sneaking a beer into the room for Josh; a friend putting a blue hospital glove on his hand to make me smile; sweet handmade cards from our kids and friends; and my father-in-law revealing he had shaved my name in the side of his head – yes, seriously!! M-E-G (photo below, for proof).

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Each act of kindness amounted to something so much bigger; the incredible support system we have standing behind us.

On Day 2, I was released from the ICU to intermediate care. I was able to hold my head up a bit more, and even took a short walk down the hallway, with some assistance. After a nap, Josh and I agreed that our babies could visit. But, I didn’t want them to see me as a sick mom in a hospital bed. So, Josh helped me change out of my hospital gown and into my normal mom-gear (yoga pants and a T-shirt), my nurses agreed to let me ditch the pulse oximeter (for just an hour), and a cousin brought in those sweet rays of sunshine!

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After about 10 seconds… it was clear that my act was not fooling either of them. Our oldest hated the IV in my arm, and our youngest kept giving my “hat” funny looks. Eventually, they both let me hug and snuggle them, as long as the IV didn’t come too close.

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On Day 3, a team of neurosurgeons woke me up and were ready to remove my “hat.” Since surgery, I had been wondering how much hair was left on my head. Josh had even shaved his head to show support. When the time came, it was like ripping off a band-aid; quick, and so painful I saw stars. My hands instinctually went up. I still had hair, but it felt foreign; it was twisted, tangled, and matted with blood.

The doctor said the incision looked “great,” but I can assure you there is nothing pretty about wearing a headband of stitches (I’ll save you from the gory images here).

It took a dedicated nurse, 2 bottles of awful sterile hospital shampoo, and 4 towels to get my hair semi-clean. Upon starting, the most patient nurse in the world asked if my hair was red. I told her “no, it’s blonde.” Her eyes widened, and she got to work trying to find my hair amid the mess on my head. I watched the water run red for over an hour. My hair was coming out in handfuls. At one point, a few metal staples even fell onto the tile, and washed down the drain. That poor nurse scrubbed for as long as I could tolerate it. When I could no longer hold my head up, I changed into dry clothes, and slept off the pain.

I must have slept for hours; but it’s easy to lose track of time in the hospital. I woke up when that very same nurse came in to announce we were being discharged!

Home!

This is my story, and I’m so grateful that it is not over yet.

What, like it’s brain surgery?

As humans, we have a natural tendency to try to fix things that are broken. The problem with an incurable illness is that it cannot be fixed. There is no cure. Yet, we try anyway.

Two days prior to my scheduled craniotomy, my surgeon called. If you have a neurosurgeon, you know that getting a direct call from him or her is rarely to discuss the weather. This was no exception.

My latest MRI scan showed that the largest of my tumors (about the size of a large strawberry) had grown into the main vein that supplies blood flow to my body. He sensitively expressed concerns for cutting off blood supply to my brain (which would kill me), or causing a stroke and deficits. He still felt strongly that surgery was my best chance of survival as the tumor would continue to grow and eventually cut off blood supply on its own anyway. We had to do something.

I hope you’ve never had to hang up from a call like that.

All I could think was, “I want to live!”

I had worked hard and achieved so much out of life, but I hadn’t gotten to LIVE it all yet. It felt like we were just getting started. I still wanted to travel with my husband, finish our basement, and develop my career. I wanted to see my children grow up; the baby was born just last year! What sports would they play? What books would they read? Who would they decide to become?

I’ve always been a firm believer in talking to my children and telling them the truth. They’re young, and incapable of fully understanding such a BIG situation. But, when we talked to them, they understood “it hurts,” “I’m scared,” “I need the doctors help,” and “I’m doing this because I love you so much that I have to try.

I made it my mission to do everything I could to make them feel loved before surgery. Our favorite was going to Build-A-Bear so we could make “friends” to keep each other company while I was hospitalized again. I recorded my voice telling each of them how much I loved them so that they could hit the button whenever they missed me. Subconsciously, I also knew that if i didn’t wake up from surgery, I was leaving them with a beautiful memory, and a recording of my voice to remind them every day how big my love was.

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They made me a bear too, Buddy. He was a black and white Star Wars bear with yellow power ranger pajamas and a light saber. He was perfect. When we got home, I put him straight into my hospital bag. He was going to surgery with me.

Our 4 year old wanted to make beaded necklaces that said “forever,” so we knew “we are always together even when we are apart,” (yeah, he’s insightful). So we did. And, that night, I rocked my 1 year old, my last baby, in the silence of his room. When that wasn’t enough, I climbed over the railing and laid in his tiny little crib with him until he fell asleep.

Long after everyone else in the house was asleep (we had a full house!), I stayed up to finish writing a letter for my husband to read while I was in surgery. It included some helpful hints, like our Amazon password, what size clothes our kids were currently wearing, and a reminder to not ever feed our boys McDonalds, no matter how bad it gets! I also told him how much I love him, how he changed my life, and how hard I would fight to be there for him at the end of the day. Then it was time to try to sleep (yeah, right).

When my alarm went off at 4am, my eyes were already open. I didn’t bother with makeup, afterall, I was having a major craniotomy. But, I did take extra time to style my long blonde hair, knowing it would be the last time.

Then, I took off my jewelry; my wedding rings and a necklace that said “Be Brave.” I hadn’t taken either piece off since I left the hospital after being diagnosed. I took a deep breath. I felt totally exposed.

Brave

Upon arriving at the hospital, our medical team started fussing over me right away; there were papers to sign, IVs to put in, one last MRI to double check blood flow, and markers to be placed for navigation.

In order to properly place the markers, 8 patches of hair were shaved away by my nurses. I grit my teeth together as the buzzer shaved away, and closed my eyes so I didn’t have to see my long blonde hair hit the hospital bed or thrown in the trash. When the last marker was placed, I ran my hands through my hair, and huge clumps fell into my fingers. Without a word, my husband held out his hand to take the strands. And then he held me so I could cry.

In hindsight, it was such a trivial thing in the big scheme of things… to cry over a few spots of shaved hair. I know that hair grows back. But, it was the moment that everything hit me. This was happening. I was having brain surgery. And, I might not wake up from it.

My neurosurgeon came in, scribbled his initials on the right side of my forehead in blue marker, shook my husbands hand, and then it was time to go.

In the operating room, one of my anesthesiologists introduced herself, helped me settle on the table, and then placed the mask over my nose and mouth. She told me to take a few big breaths.

As I did, the room started to fade away. My last thought was “I want to live. Please God, let me live.”

And then I was out, and it was all between God and my neurosurgeon.

This is my story, and it is not over yet.

23 Days

I was fresh out of the hospital, newly diagnosed with NF2 and an emotional trainwreck. One minute I was elated to sleep in my own bed and not be poked for blood at 4am, the next I was frustrated from being in pain, and afraid of having more seizures.

Walking through the garage door into our kitchen was tough. The last time I had been in that kitchen, I had fallen onto that turquoise rug by the sink from my first seizure, the one that changed everything.

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Now, the house was busting with company; friends and family had flown in from all over the U.S. to support us. Upon my arrival, our ‘guests’ quickly busied themselves with laundry, cooking, and grocery shopping so I could rest. I woke up about an hour later to find myself alone in the house while my husband picked up my prescriptions, my dad and stepmom picked up my brother and sister-in-law from the airport, and my mother-in-law picked up my kids. Never underestimate the power of an amazing support system!

I turned the shower on and stared at my face in the mirror while the water warmed. Did I look different? My reflection appeared the same on the outside, but on the inside, I was completely overwhelmed. My husband had stayed with me every minute in the hospital and I had stayed strong for him. I knew that if I crumbled, he would too. But, here, all alone, in our home, I allowed myself to feel the emotions that I had suppressed; anger; frustration; confusion; fear.

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Instinctively, I fell to my knees on the bathroom floor. As the shower ran, I cried. And then my cries turned to screams. I screamed for my children and the possibility of them having NF2 too; I screamed for my husband because he doesn’t deserve this; I screamed for my dad because the worst thing in the world is to watch your child suffer. And then I screamed for me. I screamed out all the “why is this happening” and all of the “why me’s.” I screamed out all the frustration of being diagnosed with an incurable illness, and all my fears for what was next.

And then I prayed. I prayed like I had never prayed before. I prayed for all of the things I had screamed for just moments ago.

And then I was done. I have never been the type to linger very long in a self-induced pity party. I decided that would be my last tantrum; besides, my 4 year old was better at it anyway. I stood up, wiped the tears from my face, and let the shower wash away the hospital. Is it just me, or is there something seriously healing about a hot shower?

I had 23 days before I would be readmitted for my first craniotomy. It was the best gift I could ask for, and I was ready to make the most of it. 

I would never wish NF2 on anyone, but for the first time, I appreciated the diagnosis. It gave me the unique opportunity to look at life through a different lens, and reevaluate what was really important. I held my children longer, kissed my husband more often, and told all of the people I love that I love them. I fell in love with life again.

We took our boys to the park just to watch them play, introduced our 1 year old to the movie theater, brought our 4 year old to the best steakhouse in Denver, lit fireworks in front of our house on the 4th of July, and drank the expensive wine.

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A week before surgery, we took our boys to a Rockies game with one of my oldest friends who had flown in with her family from Kentucky, where I was raised. If you have brain tumors, I know what you’re thinking; the noise; the walking; the pain! But I went anyway, because I wanted so badly to see the joy on my boys faces and to experience something that had been normal for us before my diagnosis. I did it! I walked all the way around the stadium, cheered for the Rockies, and helped my babies to clap in all the right places, despite the noise. The Rockies lost that night, but I have never enjoyed a ballgame so much.

5 days before surgery, our best friends offered to take our boys for a fun sleepover, and Josh arranged a weekend getaway in Estes Park for just the 2 of us. We had some tough conversations about what could happen on the day of surgery, cried a little, laughed a lot, fed the squirrels on the mountain, and finished our weekend getaway with a great dinner at the Stanley Hotel.

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By the time I went in for surgery, I had never been more certain that this life is so worth fighting for. I was ready.

This is my story, and it is not over yet.