My husband and I got married while he was serving in the United States Marine Corps. Not long after he returned from his second deployment to Afghanistan, we found out we were expecting our first child! Ace was born in a Naval hospital and was warmly welcomed by my husband’s platoon.
Soon after Ace was born, my husband’s active duty enlistment was up and we decided to move to Iowa to be closer to family. Moving to Iowa was an adjustment! My husband was used to the military lifestyle: the dress code, odd sense of humor, danger, and being part of an all-around brotherhood. He had trouble fitting in here. I was a stay-at-home mom with a newborn in a new area and I honestly didn’t know where to meet other moms. It was a lonely time for both of us.
Not too long down the road, after a surprise pregnancy that ended in miscarriage, I became pregnant with our rainbow baby. We assumed we could handle it. “This isn’t our first rodeo and it will be easier the second time around,” we thought.
Wrong. Nope. Not even close!
Our second son, Gunner, was born with such sweet rolls and was a quiet little one. He just liked to cuddle. Much different than Ace’s personality, but of course, we were delighted. About six weeks after he was born, we started noticing something just wasn’t right with Gunner’s eyes. He didn’t look at anyone when they were talking to him. He didn’t look at the toys we got for him. His eyes couldn’t focus, they just bounced around (the medical term is Nystagmus: a condition of involuntary eye movement, acquired in infancy or later in life that may result in reduced or limited vision). When Gunner was four months old, after many tests, specialists, and appointments, we learned he was born blind.
Blind. Our baby was blind. Very blind. Not just a little bit, but actually completely, legally, blind. Our world was rocked.
I remember when the doctor told me, except the words she used was not “blind.” It was more along the lines of visually impaired, less than 20/20 vision, retinas do not respond…something like that. My husband just sat there quietly. I asked the doctor to write down the name of his disorder for me so I knew how to spell it, what to tell others, what I needed to research, etc. Gunner was born with a rare retina disorder called Leber’s Congenital Amaurosis. There is no cure at this time.
After the shock wore off, I cried a lot. Especially when I was nursing him and he was “looking” at my face, but I knew he couldn’t see it. I stared at him when he was asleep in my arms (I still do) and cried over the fact he will never see my smile when I am bursting with pride and joy at one of his accomplishments, or when I laugh at something silly he does. How will I go about mothering a child who can’t see?
Somewhere between crying and researching the disorder, we began to face a new challenge: having others accept Gunner for who he was. People would notice his Nystagmus while I’d be out with him running errands. They would ask, “What’s wrong with him?” “Did you do drugs while pregnant? Is that why he was born this way?” (Could you imagine the look on my face of complete confusion, horror, disgust, sadness, and pain? Yes, these are adults asking me these questions…)
We would also have people pray over his eyes and ask God to heal him so he may see. I won’t dive too deep into that one, but I think if he was born blind then he was born blind for a reason and we shouldn’t have to pray for him to be “healed.”
[quote style=”boxed” float=”right”]”What’s wrong with him?” “Did you do drugs while pregnant? Is that why he was born this way?”[/quote]I again became a hermit. I felt defeated. Why would people treat a baby like this?! A sweet, caring, sensitive child. Unfortunately, I have also lost some friends who, after finding out Gunner’s disABILITY, don’t want to hang out with us because they are not sure what to do around Gunner. It’s hard for others to accept him. Sure he’s adorable and has the sweetest voice, and he’s cute to watch on snapchat and Facebook, but in person it’s a whole other ball game.
Very quickly I began a mission to advocate for him. I will be his voice until he is able to use his voice. I will educate others on his disorder. I will continue to learn braille and do whatever else it takes to help him with homework, reading, life, etc. just like I would with my oldest son. I read braille books and send them to people. I tell our story every chance I get.
It’s up to others to welcome Gunner as the child he was born to be and to teach their children and loved ones that everyone is different, and that’s okay! You can help the parents of children with disABILITIES by teaching your children that there may be a child in their class that reads braille, uses a cane, is in a wheelchair, wears a hearing aid, has a service dog, etc. And that’s perfectly fine! He can still build blocks and play with cars. He just wants to play like any other kid would.
I always tell people to watch how Ace treats Gunner; that’s how I would hope and expect others to treat him.
Special thanks to our Guest Blogger, Ashlyn, for sharing her perspective with us!!
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