March 10, 2015 @ 8:15 AM
by Ryan Thomason / Deaf Blind and Running
I was asked last week from someone I’ve met since starting Deaf/Blind and Running if I could express what it’s like being a parent and having Usher Syndrome.
I couldn’t help but smile at some of the examples in her life that she gave me being a parent with Usher Syndrome herself. They were nearly identical to my own. This can be an emotionally tough subject to tackle. My throat wells up when I think about how my disease has already effected my kids and their life, their future, what society has as a perception of normal. I had taken a little longer than I wanted to finish this (I was planning on doing it last Wednesday), but I think it lays out my feelings on being a parent that is going Deaf/Blind.
My oldest is my son Lincoln who is seven, my daughter Finley is about to turn five in a couple of weeks. They are both incredibly loving and compassionate little kids. I do believe that my Usher Syndrome has had a big effect on that as they’ve grown. There are a couple of basic ground rules that we have established because of having one parent going Deaf/Blind. These are the things that we have to constantly remind our kids, because they are kids who forget everything you told them 10 minutes ago. We tell them these things because we don’t want them to get hurt. I’ll get more in depth on that in a bit.
In no particular order the basic rules are:
- Do not walk in front of Daddy, you will most likely get your heel stepped on or knocked over.
- If you are sitting on the bottom stair putting on shoes and Dad starts walking down the stairs shout “KID ON THE STAIRS!” but you know, in a cute kid way.
- If we are inside and you want to give Dad something, hand it to him. Do not toss it at him unless you want it to fall on the ground and possibly break.
- If you leave toys or something breakable on the ground anywhere that isn’t your room or the playroom, it’s not Dad’s fault if he stepped on it and broke it. (Ok, that’s mostly one I made up to cover for myself)
- Do not lay on the ground in the hallways or places where we have to walk to get to rooms.
- You can’t run away from Dad if we go into a building and we were holding hands.
- Dad can’t understand what you are saying unless you are looking at him and not moving around.
- Wave your hands if you are trying to talk to Dad and he can’t hear you.
Being a parent with Usher Syndrome is difficult and stressful. Sometimes you have mild panic attacks in public when you think you lost a visual on them but they’re standing right behind you. Every time I bump into them, knocking them over or not, it is hard every time to live with. Or, if I do something that hurts them, it breaks my heart because I know if I could see better they would be Ok. I can’t tell you how many times I could be holding something and accidentally hit them with it when I’m turning or walking with the object. We’ve established the basic rules because of things that have happened. Once, when I was walking down the stairs I had no idea my daughter was sitting on them. By the time I realized I was stepping on her, I reacted by pulling my foot up immediately and trying to avoid her. I ended up falling down the last two stairs and my daughter was crying because she got hurt. When I’m playing soccer with my son, which is our normal go to when we play outside. I’ll be trying to break away from him with the ball and he will all of a sudden come flying in from the side, right under my peripheral vision. Anybody else would have seen him, but the next thing I know I’m trying to grab him to protect him or trying to get to the ground without plowing into him. Sometimes, I can’t react fast enough and we both go sprawling to the ground. I have a deep fear of knocking my kids down the stairs, so I often times tell them not to stand or play around the top of the stairs. Even something as simple as laying down in the living room coloring or playing with toys, I can’t tell you how many times I’ve tripped over one of them or almost stepped on my kids. As my kids get older, they are not only increasingly more agile, but more aware of these situations. When things do happen though…it’s hard, very hard. I am glad these things don’t happen every day, or even every week/month.
Nobody ever wants to intentionally do something that makes your kids cry. So, as I’m holding them or my wife is consoling them I’m trying to hold back my own emotions. A lot of it is clenching teeth, squeezing my eyes and fists tight and trying to tell myself that it was just an accident. Internally, I’m screaming at the top of my lungs and banging on the walls in frustration. I replay everything back in my mind, what could I have done differently. What do I have to change about my life now to keep this from happening again? It’s a cycle that starts every time on even the most minor of things. My kids know that I have a hard time seeing and hearing things. You never want to be in that situation as a parent. I want to always be the protector that shields them from harm, but I can’t always be that dad.
One thing I do know for sure though, is that having Usher Syndrome has made my kids more compassionate, patient and loving. When I play outside with my kids, we play a lot of sports. Playing catch with a baseball is something I can barely do, as I do have my limits. If I can’t catch the baseball or football it’s going to end up on the ground. You have no idea how frustrating it is to stand there with my hands on my hips looking at the area round me, hoping that the bulging shape of the ball against the blades of grass will connect with my vision. Most times, my son will silently jog over and just pick up the ball and give it to me or he’ll give me directions to where it is. My eyes will finally connect with where the ball was hiding in my island vision, I’ll give him a “thanks bud.” and he’ll just smile and jog back to his spot for me to throw the ball his way if he picked it up for me. Last year when we were on a family vacation with our friends in Las Vegas, my family was having a very hard time getting around with our normal walking formation. Which is me holding my daughter, my wife holding my elbow and my son’s hand with her other hand. Going three people wide, my wife can help me get around anything in our way or help steer me to where we are going. With the press of people everywhere combined with me not using any blind assistance devices it was just getting hard to navigate around in our standard way. So, we had to go my wife holding or walking with Finley and Lincoln would hold my and while we followed. Lincoln, all on his own whispered to me. “If I squeeze your hand twice, that means stop. Three times we can go. If I turn it left or right, go that way, ok?” I welled up with pride that he came up with it all on his own amid all the crowds. Then, I felt a deep sorrow because that is something no six year old should have to do just to get his dad get around. Now that we’ve been doing this for nearly a year, he has been a huge help in our family around places if my vision makes things too difficult.
Being a parent with Usher Syndrome is a constant roller coaster. I feel like I always have to be on guard, so that I don’t do something that causes them to get seriously hurt. It’s mentally exhausting, every single day. Sometimes the stress of it all has me finding excuses to not play certain games they enjoy with them, which I know isn’t right for them. I feel terrible doing it if I do, but it’s hard spending every day staring at the ground looking for that ball or toy and the insecurities that come with it. It’s hard doing things with my kids that were easy just a few years ago, but I’m starting to find myself having to do things differently now. I already don’t allow myself to imagine what my future as a parent is going to be like if my vision gets worse before certain milestones in their lives. I just tell myself that I will see my kids get married, I will be able to see my daughter walk down the aisle with me. I will see my grandkids, and my kids as adults. It’s too easy to lose hope when you have Usher Syndrome and everything about your progressive loss is an unknown.
I do find myself becoming more dependent on the assistance of my children while they are this young, and it shouldn’t be that way. It is my reality though.
Today I ran 4.5 miles to start my week in a total of 50:40, making my pace 11:07! Last week I did two 4.5 mile runs with a 2.5 mile run on last Wednesday, and a nice little family walk with my wife/kids for .7 miles. My body is getting more and more used to the longer run in my training. I’m wondering if doing a 10k run for training is going to be my next step a lot sooner than I was expecting.
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