What you don't know about Usher's Syndrome

Yes, I’m the mom with the screaming child at the park. I’m the mom whose child clings to her hip when she tries to place him down on the ground. I’m the mother to the child who stops at every cement crack to cry and ask for my assistance and while you stare and whisper there are things that aren't apparent to the naked eye. There’s something you should know before you make comments stating “if my child had more interaction like daycare with other children he wouldn't be so needy.” “How my child must be a “hip” baby because he’s so spoiled.”

What you didn't know is that my child has been diagnosed with Usher Syndrome. He clings to my hip because he lives a life of uncertainty. He has begun to progressively lose his vision and has no depth perception. When I place him on the ground he is terrified for his life because he isn't comfortable without my guidance. He takes a minute to warm up to the idea of walking in a strange environment on his own because he has compromised balance and no depth perception. Simple things like a crack in the concrete are terrifying to him because in his eyes the sidewalk is dropping off.

What you don’t know is that he is completely comfortable in his own home and is a totally different child when he is in a familiar environment. So next time we are taking too long to slide down the slide please remember that. We are growing and learning every day and one day this world won’t be so scary without my momma’s hand.

What you don’t know is that immune deficiencies come with Usher Syndrome and my child can’t attend daycare yet because he has a compromised immune system. Any normal cold is strong enough to wipe his body out. He gets interaction with other children, but can’t be in a daycare 24/7 or he’d be in the hospital weekly.

Before Easton’s diagnosis I used to take him to the gym with me while he played in the gym daycare for an hour while I worked out a few days a week. I would be about 15 minutes into my workout and a daycare worker would have already found me because they had lost patience with him. He cried too much and must be really spoiled at home they said. But what they didn't know is that even though he appears “normal” he is faced with lots of uncertainty and requires more patience.  

I've been reluctant to share information lately or even post on the subject matter, because frankly we’re all still healing from the shock of the diagnosis. I've distanced myself from friends and family because I’m still learning how to cope. Usher Syndrome effects nearly 50,000 in the United States and Easton is among that chosen few. This makes up the vast majority of all the Deaf-Blind population.

As a mother it is a lot to try to grasp and understand. The more I read the more scared I become. I want to be as educated as possible on the subject, but honestly the diagnosis is extremely sickening and hard to handle. Not only does Easton face a life deaf/blind but also a life full of immune disorder. As if going deaf and blind wasn't enough they've now linked Usher’s to neurological issues and seizures.

Easton is not only a child with Usher Syndrome, but he’s also faced with other health problems. I've come to learn a lot in these last 18 months and experienced things some may never think possible. One thing is for certain in a life full of uncertainty is that we won’t let these conditions define us or define who Easton is. We are learning and growing from these conditions. We have a new appreciation for life and know that things could ALWAYS be much worse than they are.

I want to share this with the world and let them know not all disabilities are visible. You can’t even begin to imagine the things that come with these disabilities. Many are fighting an unknown battle that we know nothing about. I want to empower you to try to have patience with children/people because you never know the troubles they are facing.