The only thing worse than being blind is having sight but no VISION.

I’ve always lived a life full of gratitude, but until recently, I never thought to be grateful for the ability to see shapes, color, my children’s faces, the sunset over the mountains, words in a book, or the road in front of me.

It didn’t happen overnight, but gradually, over time. I started noticing blurred lines, then complete double vision. As more time went by, my vision continued to decline.

My optometrist was shocked by my condition, saying my cornea was in a state that she had never seen before. It looked like there was a small hurricane covering my right eye, and harnessing my ability to see. She took pictures to show her colleagues, and referred me to a corneal specialist for help.

(In medical terminology, this ‘circular pattern’ is called Hurricane Keratopathy.)

At my first visit with the corneal specialist, I attempted to pass a simple eye exam. I stared at the “E” being projected on the wall. I knew what it was, but I couldn’t see it; it looked more like a “B” or an “8,” and I saw about 5 of them in a bow tie pattern.

Single-E-Test-Card

That day, I lost the ability to drive a car. I couldn’t pick my children up from school, drive myself to work, or run to the bank or grocery store anymore.

After several weeks of failed tests, eye surgery was scheduled. We would remove the epithelial layer covering my cornea in hopes that new and healthy cells would regenerate, restoring my vision.

 

I went in for eye surgery feeling desperate, and came out feeling hopeful.

With the bandage on, I lived in suspense for over a week, praying that surgery was successful.

Unfortunately, when the bandage came off, I couldn’t read the magazine cover in the corner of the room. My ophthalmologist took a look at my cornea and sat back in his chair with his arms crossed and a look of disappointment cast across his face. I knew surgery was unsuccessful before he spoke.

He said, “it’s very rare that a pattern such as this would ever appear in the first place, and it’s even more rare for it to reappear after surgery.

I was crushed.

That day, I allowed myself to grieve the loss of my eyesight; I cried, yelled, cussed, pouted, and prayed.

Then, the next morning, I woke up ready to move on, once again accepting a new normal gifted by NF2.

The very next night, my husband and I settled in on the couch to watch television together. My husband had learned to read off the titles since I couldn’t. He started mumbling off names of movies as he scrolled through the channels until I stopped him…

I think I can read that,” I said skeptically.

I tested my eyes by covering one and then the other. To my amazement, I could see letters and pictures more clearly than I had in months.

The next morning, I had a follow up visit with my ophthalmologist and was able to comfortably drive myself to my appointment.

This time, when his assistant put that big “E” on the screen, I could see it. I smiled and proudly read one line of letters, and then another, and then another.

This time, when my ophthalmologist looked at my cornea, he sat back in his chair and crosses his arms again. Instead of disappointment, his eyes were flooded with confusion.

The circular pattern is still visible in your eye, but your vision has drastically improved,” he said. “I thought we were going to have to schedule another surgery, but you seem to be able to see through the pattern now. I don’t know how to explain this, but I’m pleased with your improvement.

He didn’t know how to explain it, but I did;

Faith is not about proof; it is about believing despite the lack of explanation.

In those days when I felt defeated, I leaned further into my faith. Maybe we don’t truly learn to wear the armor of God until the arrows are flying. 

Despite the lack of explanation, I know that I will never again open my eyes without gratitude.

best-wisdom-quote-sight

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

A day in the life of a mom (with brain tumors)

5:45AM. Crying sounds coming through the baby monitor. Why is our youngest always awake before the sun?

5:46AM. Upon being pulled from his crib, our youngest hastily demands his dad (who has already left for work), orange juice, a potty break, a new pair of pants, and a phantom toy that I am not sure exists. I raid the medicine cabinet for my various morning medications before the screaming can escalate.

medicine

5:47AM. Too late; my youngest is screaming like a banshee over the toy that does not exist. I pray that my medicine kicks in quickly.

6AM. My youngest finishes throwing a major tantrum and wants to “snuggle” and say “I love you mommy.” So I cave, and forgive him for screaming like a banshee over the toy that does not exist.

6:30AM. Time to wake my oldest. I need coffee. He hates to be woken up for school.

Grumpy Morning

7:00AM. We’re going to be late. Everyone out the door! I fasten 2 grumpy children into their car seats to contain them while I pack lunchboxes, vitamins, a backpack, a diaper bag, and snacks for the 5 minute car ride.

7:05AM.  I pull out of the driveway but realize I forgot my laptop (or phone, or lunch, or coffee, or homework, or something equally important).

7:10AM. I pull out of the driveway again while trying to explain to my 5 year old that yes, he will have to brush his teeth every morning for the rest of his life.

7:30AM. Drop off child #1; whichever is the loudest while navigating out of the neighborhood is the one who gets dropped off first. 

7:45AM. Drop off child #2.

7:46AM. Listen to the sound of quiet, take a deep breath and a drink of coffee. Is it normal to feel like you’ve run a marathon before 8am?

7:47AM. Call dad while driving to work.

12PM. I usually use my lunch break to review my most recent lab results or call Neurology, Oncology, or another equally important specialist, to schedule my next appointment.

2PM. My youngest child’s school calls. He’s coughing uncontrollably. Seriously, where was that cough this morning? I explicitly remember screaming… but no cough.

2:30PM. I arrive at school to pick up my potentially sick boy.

2:45PM. I call our pediatrician because my baby truly is coughing like crazy and sounds like he has croup. Again.

3:30PM. Pediatrician confirms my sick boy does, in fact, have croup. Again.

Doctor's Office

3:45PM. I call my husband to tell him we have a sick boy. Again. He knows the drill. He’ll get Pedialyte, Eucalyptus, cough drops, and more Motrin on his way home.

4:15PM. Watch Aquaman for the 106,715th time while holding sick boy in left arm, and replying to my remaining work emails with my right.

5:15PM. Time to pick up my oldest.

5:17PM. Our oldest flings his shoes off in the car and one misses my head by an inch. I explain, once again, that it is not nice to throw things at anyone’s head, especially mine.

5:40PM. I’m starving (did I even eat lunch?). I throw a protein and veggie into the oven and begin The Dinner Countdown.

5:50PM. “It’s almost dinner time, boys!”

5:55PM. “Come and eat, boys, it’s dinner time.

5:56PM. “You better come eat or it’s going to be cold.

5:57PM. “Can anyone hear my words?

6PM. I finally herd our children to the dinner table – success! But, then my husband walks in the door, and they both abandon their plates to attack him with hugs (can’t even blame them).

Daddy Hugs

6:15PM. Both boys want snacks. So badly, in fact, that they’ve dumped an entire bag of veggie straws onto the floor. Why do I even bother making dinner?

veggie straws

6:30PM. Bathtime. I listen to my husband (try) to contain our children in the tub while I pick up rogue Legos (because those things hurt when you step on them), and socks. How many pairs of socks do 2 little boys wear in a day?

7:15PM. Bedtime. My husband and I split forces; it’s best if we split up. I take one kid, and he takes the other. We turn into human servants while we retrieve water, read books, brush teeth, kiss all of their owies, and tuck them in.

8:15PM.  Bedtime. For real this time.

8:30PM. Once we’ve ensured both boys are snoring in their beds, my husband and I get to relax. We chat about our day while packing lunches for the next, and then watch a TV show together.

9:30PM. The last thing we always do before we fall asleep is say, “I love you.

…If you’re still reading it’s because you can totally relate to the busy life of a working mom, or you’re waiting for a dramatic line about having a stress related seizure, or an unbearable migraine.

But, the truth is, most of my daily challenges are toddler-related, not tumor-related.

Sure, I take more medicine than most, and have to be more conscious of things flying at my head than most, but having tumors does not consume my day. My family consumes my day.

In the title of this blog, “A day in the life of a mom (with brain tumors),” I put “with brain tumors” in parenthesis to make a point; I am, and always will be, a wife and a mom, and so many other things before I am someone with brain tumors. 

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

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.