Before the world goes dark

Imagine if you will. It is 7am. You are drifting in and out of consciousness, contemplating waking up when your four year old daughter lands on the bed. “Good moaning mom!” she exclaims, still not yet able to get that good “r” sound. She loves the mornings when she is one of the first ones up. She curls up next to you and starts coaxing you out from under the covers. “Mom! It’s moaning! The sun is shining! The birds are singing. The flowas are going to bloom today! You have to get out of bed!” Her giggles are contagious and uplifting, better that the coffee you can smell brewing in the kitchen. She snuggles her face up to yours, gently nudging like a puppy would do. You open your eyes. You can’t see her. And right at that moment, your heart drops and a tightness rises in your chest. You can’t see her.

You can’t see her expresso eyes glittering as the sun coming into the window hits them. You can’t see those chubby cheeks that you kiss at least fifty times a day. You know she is there, but she is hidden. You have been blinded in one eye with the very real possibility of being blinded all together. Today, you are able to roll over so the one good eye can see that beautiful miracle you made. But before you are able to think about how lucky you are that she is yours, you first have to push aside the fear that one day, that face may forever be hidden from you.

This is my story. Over the last few months, I have lost the eyesight in my right eye. My eyes constantly hurt with pain ranging from throbbing to stabbing pain. It is accompanied with other issues such as muscle weakness, fatigue, and body pain, but the loss of vision is the main issue that have the doctors struggling to find answers. I have been through more tests than I can count, yet we don’t have an answer for why I have lost half my sight or how much further it will go. As of the current moment, the doctors know I have some sort of autoimmune disease that is causing my body to attack itself, but autoimmune diseases are interesting in the fact that some are nearly impossible to diagnose or even figure out what can cure or at least slow it down.

Millions of people in this world suffer from autoimmune diseases. Some being very well known life Multiple Sclerosis, Celiac Disease, Type 1 diabetes. However, many are still random, unknown and not understood. It not only makes a person going through the process feel lost, but also a bit like they are losing their mind. There are days I can go all day without any issues (other than the whole blindness thing), and there are days where I feel like I am trying to workout while battling the flu. Days where naps are mandatory and even then, there is no energy flowing through my body. It’s perplexing, haunting, frustrating, and heart wrenching to say the least.

I have had to quit my job as a result of my loss of vision as well as the other physical tolls that this disease is having on me. I miss working. I miss the people, the job and the mission I was a part of. It is hard dealing with a constant sense of defeat, but I am not the type of person who settles and admits defeat. Luckily for me, I have a wonderful husband who has been there for me throughout this and is supporting me like no other. We decided to buy an RV. We took the kids out of school. We are traveling. We are seeing the world before the world goes dark. We are learning how to adapt.

My son is kind of like my seeing-eye kid. He walks on my right side everywhere we go and tells me what is on that side so I don’t bump into anything. He keeps me focused on the positive. My husband is devoted to finding a natural way for my body to heal itself. We are working on breathing, meditation, yoga. He reminds me not to stress myself out. He is understanding and encouraging. And then there is my daughter. Well, she is a bit too young to understand the concept of being sick. That’s what I like most. She pushes me to get out of bed. To open my eyes. To giggle and cuddle as much as possible. To go outside and see the “flowas” bloom.

The spring is here, it is a beautiful day. Let’s go out and see it.