Today Chancey and I hung out at the farm. She runs and I roll back and forth over this whole driveway approximately 5 times on any given day.
As a person in a wheelchair it isn’t easy to roll through gravel. There is definitely a resistance when rolling through it. Much like any other resistance I have faced due to my disability, whether dealing with accessibility or issues related to Spina Bifida, I have built up endurance to many trials I have faced.
The first reason is due to my unwavering faith in Jesus. Secondly, encouragement from friends and family who have walked the “gravel” with me.
After pushing hard almost daily, it has become easier to roll through the gravel. I never gave up nor will I ever give up.
The past few months someone has come over on a weekly basis and helped get confident in cooking. This is one of the most difficult things I have had to overcome. The confidence didn’t come easy. Thankfully someone invested their time in me and helped me learn. Today, I can make a very good meatloaf. I can’t also make baked chicken, stuffed chicken (I stuff with roasted red peppers) I have learned to make cobblers several other foods.
In the picture, I’m sitting on a stool which I bought today because the only thing I was missing in cooking was being able to use the stove. I tried using a mirror. It was helpful to some degree, but I really wanted to get up to it.
Since I am cooking more, I have a lot more energy. Although this past week I have not felt like cooking because I have a UTI. I started on antibiotics yesterday and today was already prepared to cook green beans.
I went from no confidence to great confidence in my cooking. I’m very glad I didn’t let fear of cooking hold me back. It truly has made a difference.
Tonight I had a wonderful opportunity to play Power Chair Soccer. It was the first time I had done this in a power chair. It reminded me of being a kid playing wheelchair soccer, except back then we played in a non-motorized chair.
Unfortunately the battery in the chair was almost out of juice, so they let me play for fun as a goalie in my regular wheelchair.
At one point, while in my regular wheelchair I started heading for the ball that was coming toward the goal. Another guy was headed in my direction trying to get the ball too. We hit the ball simultaneously, and my back tires went up in the air. It was hilarious!
All in all, it was a fantastic evening and I look forward to more opportunities in the future.
Since I don’t have a picture of me playing, I decided to use a picture of my dog.
From the earliest moments in my childhood I was taught to never stare at other people because it was rude. Here’s the catch; I got stared at a lot! With the stares came uncomfortable questions: “Why are you so little?”
Of course that led to a sense of insecurity. Between my secondary issues I faced mostly as a kid, and all the stares, sometimes going to school was not so much fun.
Today, people still stare at me. Especially little kids. For me, it’s interesting to watch the parent’s response. The parent’s are often put in a very uncomfortable place.
How one mom changed my thinking.
I was shopping for groceries one day when a mom came up to me and asked if her child could approach me to ask a couple of questions.
Naturally, I wasn’t going to turn and roll away. The child wanted to know why I was in a wheelchair and why I was so small.
I could see that this child wasn’t staring at me just because I looked differently. This child was staring out of curiosity.
I don’t remember how I answered, but I do remember thanking the mom for allowing her child to learn something about me and from me.
While staring is viewed as rude to the general public, I have learned that staring can be valuable if it honors the person of whom is being stared.
To any parent who faces this awkward moment, I would encourage you to go up to the person in a wheelchair and simply ask if they can speak to your child.
If you’re the person in a wheelchair, I hope you will take the time speak to a curious child who wants to ask uncomfortable questions.
I believe the more we are educated about one another, no matter whether it involves a disability or not, the highest walls can be torn down and we’ll have the opportunity to see each other as people created in the image of God.
I thoroughly enjoy a road trip. There was the time when my family and I got into a camper and drove up the Eastern states. One of the funniest things happened on this trip. We were all so stressed because two of the kids were constantly arguing. Apparently that stress really got to me by the time we hit up state New York.
We were 45 minutes up the road headed toward Canada when my step mom looks back and asks, “Trey, where’s your chair?” Yep. I had forgotten to ask someone to put my wheelchair in the camper. We drove 45 minutes back to the restaurant and my wheelchair was sitting in the parking lot where I had climbed in.
I have a good bit of experience in airplane travel, too. My late cousin and I traveled to see my mom and step dad while they were living in Italy. They lived so far north that we were able to enjoy a meal in Italy, France, and Switzerland, in the same day. I loved crossing the different cultures.
My grandfather flew the company plane when he worked. I remember times when he would let me fly the plane once he got it in the air. Exhilarating! I’ve also traveled commercially, too. One of the perks I get when flying alone is that someone is always waiting to help me get through the airport to catch a connecting flight.
The most difficult part of traveling for me was when I took my first solo road trip in my car. I was filled with anxiety. But I remember when I crossed the Lake Hartwell Bridge, my first trip in the car alone, out of my state. Once I got over the bridge, I felt like I had “made it” It was like a rite of passage for me. As a kid crossing that bridge with my family, I had always looked forward to the day I could do it myself.
I am so thankful for the airlines and how efficient they are in helping people in wheelchairs.
Tonight, even, my sister and I have talked about taking a trip with her family to Alaska in 2017. That’s a place I have always wanted to visit. More to come on that in the future!
As a person in a wheelchair, I take independence very seriously. For me, the more independence leads to more confidence, which leads to more freedom.
Achieving independence for me has no doubt been a team effort. Whether it’s helping me up a flight of stairs, teaching me how to cook, or helping me get out of my comfort zone, if you’ve had any part whatsoever in this, I want to say, “Thank You!”
Recently I was reading on the internet about the struggles some parents have when they found out their baby would be born with Spina Bifida.
Their shared concern was the baby’s quality of life.
It got me thinking about my own journey as a person with Spina Bifida.
I was born with a more severe form of Spina Bifida. I have a shunt that drains excess fluid from my brain because of hydrocephelus which is common among babies born with my severity of Spina Bifida. I am paralyzed from the waist down. I have used a wheelchair since I was a very young child.
Although I have had many health issues throughout my life, I would have to say that I have always had a good quality of life. I was involved in sports early on. I taught myself to swim at the age of 7, to walk on my hands at age 5, On my own I learned the skill of ventiloquism.
Many of us with Spina Bifida are even able to have our own families. I never got around to marriage, though.
I have my own home and vehicle. I have learned how to cook and do laundry.
I’m an amateur musician and have played in my church band. As well, I write and compose my own songs.
While I have definitely had struggles throughout my life, one thing remains true, I have accomplished so much in my 48 years. Thanks to family and friends I have a good social life.
One of the greatest joys I have is owning a dog. And soon two.
Wow! I just have to thank God for the many blessings He has given me. It is because of God I have overcome so many trials. Yes, based on my own journey, I believe a person with Spina Bifida can have a good quality of life. Below is a video of me walking dogs.