Through a Child’s Eyes

It’s normal for children to have boundaries. Don’t touch the stove; be careful going down the stairs; look both ways before crossing the street; chew with your mouth closed; pick up your shoes and take them to your room.

But, in our house, our children have to abide by an extra set of rules. No loud sounds in the morning, until my medicine kicks in. Hold my right hand, because I can’t feel the left. Don’t scream in my ears. And, don’t ever, ever, ever hit mommy in the head. 

sleeping

Part of me is grateful that my 5 year old knows what to do if there is an “emergency.” Another part of me feels like his childhood is being robbed from him.

bikes

Then, last week, something happened that completely changed my perspective.

I went to the grocery store alone (a rare occurrence). I was bagging ears of corn when a 5 year old boy that I’d never met before came right up next to me and struggled to reach the bags. Just like I would help my own son, I pulled the bag down for him, and held it so he could load 6 ears of corn into it. He smiled, and thanked me “so much.”

Then I turned around and watched him walk back toward a woman who was holding a walking stick; she was blind, and holding the hand of a small boy who looked to be about 2 years old. They had a red wagon full of groceries. 

After he placed the heavy bag of corn into the wagon, I watched as his mom whispered another order to him, and off he went, to the leafy lettuce.

There are so many parallels here. Most obviously, the boys; they were the same ages as my own. I also felt connected to the mom; grocery shopping with 2 boys is hard. Doing it with a disability is even harder! 

Without hesitation, I pushed my cart to the side of the aisle, and walked over to the boy. “What else do you need? Can I help you find something?

He smiled so widely, and said he was trying to find kale. I asked his mom if she wanted organic, and then helped them check every other item off their list; spinach, cantaloupe, raisins, carrots.

When we finished, I said “it’s so nice of you to help your mom!” He shrugged nonchalantly, waved goodbye, and began to guide his mom toward the check out aisle.

I watched them walk away, and couldn’t keep the tears from pouring down my face.

Through that little boy’s eyes, nothing out of the ordinary happened at the grocery store. And, while I’ve been struggling with the harsh reality my kids are facing, they likely don’t think it’s out of the ordinary to be cautious of hitting my head, or play quietly when my head hurts.

hats

I still hate that my children have seen their mom having seizures, taken away by ambulance, and in a hospital bed. But, they’ve also seen me overcome.

They’ve seen how their daddy stepped up to take care of us when mommy couldn’t, and how family comes together in times of need. They met the doctors who cared for me, and saw how important it is to take care of our bodies. They’ve seen what unconditional love looks like. They saw healing, and they learned compassion.

Everyone needs help every once in a while, and everyone faces challenges. The sooner we teach our children that, the better.

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

 

 

 

 

 

 

Neurofibroma-what!?

Neurofibromatosis II. Neuro – Fi – Bro – Muh – Toe – Sis. NF. NF2.

The first time we heard this word was the day I was diagnosed with Neurofibromatosis Type 2 (NF2). I had never heard the word before, and had no idea what it meant.

Initially, all we knew was that I had two large masses (meningiomas) covering a good portion of the right side of my brain, causing partial seizures on the left side of my body. I was admitted to SkyRidge Medical Center, in Denver, for observation with the understanding that I could have brain surgery as soon as the next morning due to the sudden nature and severity of my symptoms. In the meantime, I spent a great deal of time in MRI machines (thank goodness I’m not claustrophobic), and had more tests and conversations with specialists than I could count. It was a complete whirlwind.

We learned so much in those initial days; NF2 is incredibly rare; it currently affects only 1 out of every 30,000 people; it is typically hereditary. Since no one in my family had been diagnosed, it was concluded that in my case, NF2 was the product of a spontaneous gene mutation, which is even rarer.

Each of our children had a 50% chance of having it too. That was devastating. My reaction? I needed to see my kids. They had been staying with family while my husband, Josh, and I were at the hospital. I couldn’t get my arms around them fast enough. As soon as they walked in the room, I pulled them right into the bed with me and studied their faces. Was it possible that tumors could be lurking behind those cute little eyes? Had there been signs? Had we missed something?

little visitors in the hospital

Every night before I fell asleep, I would pray that they wouldn’t be diagnosed in the days to come. I didn’t pray for me. I prayed for them. I knew that I would find the strength to endure whatever came next as long as my children were safe from the monstrosities of NF2.

The only fool-proof way to confirm the diagnosis is by genetic testing, which can take several weeks. We called our pediatrician, and she put in the orders for our boys to see Genetics. Since they weren’t showing signs or symptoms of NF2, we would have to wait, one of the hardest things I’ve ever had to do.

Unfortunately, I didn’t have the luxury of time on my side. Rather than starting the process for my own genetic confirmation of NF2, I was tested for characteristics of the disease. The hallmark of the disease is bilateral acoustic schwannomas (tumors in each of the ear canals). My MRI proved that I had one in my left ear. This causes balance issues, and will eventually lead to hearing loss in that ear.

The MRIs also showed meningiomas. At first, all the doctors could say was “several.” Then they said “many.” The final MRI report told us there were seventeen. SEVENTEEN little intruders hiding away in my brain. Thankfully, they all showed qualities of being benign, another indicator of NF2. But, they can still do as much damage as malignant tumors, and are often treated that way with forms of chemotherapy, surgery and radiation.

During one of several visits with a neurologist, I asked, “how long have the tumors been there?” He replied, “Probably most of your life.” I must have had a shocked and confused look on my face. He asked, “have you ever heard ringing in your ears?” My response was, “yes, doesn’t everyone?” Apparently not.

I soon realized not everyone loses their balance and falls over putting their shoes on; not everyone has headaches for five days in a row; not everyone slices their hand every time they use a knife; not everyone has over reactive reflexes as a child that intensify as they age. I had become so accustomed to these things that I didn’t even know they were signs. My body had been trying to tell me for years that something was wrong, and I had completely missed it.

Just when we thought we had finally wrapped our heads around everything, we were thrown another curve ball. Spinal tumors, often ependymomas, are another indicator of NF2. My MRIs showed them, too. I have six more invaders growing within my spinal cord; the largest one growing in my neck area. This is the scary one. Even if you’re familiar with my story, you may not know this. That bright white spot in the photo below can eventually cause paralysis from my neck down. The discovery of this tumor ended up being the reason I was released from the hospital. There was not a brain surgeon who would operate on me without weigh in from a spinal specialist first.

Spinal Cord Tumor

So, I was released, and connected to ‘the best’ neurosurgeon and spinal specialist in the area. We left the hospital with more questions than answers. We also left with the gift of time. Rather than being rushed into emergency brain surgery, I got to go home to my family. It was all I wanted. I had never been so grateful to just be alive.

I was working with one of the best neurosurgeons in the U.S., and I will always remember something he said to me during our first appointment, just a few days after my release. He said, “Nothing has changed. These tumors have likely been a part of you for the majority of your life. The only difference is now you know about them.”

He was right.

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

*DISCLAIMER: This blog documents my own experiences with Neurofibromatosis II. There are various forms of the disease, and every case seems to present itself differently. This blog is not intended to offer medical advice or counsel. Please refer medical questions to your team of doctors.