For those of you who have followed my blog, you’ll notice I have a new dog.   Yep,  that’s my Doberman Pinscher, named Grace.    

Some of you may be pondering the thought of a guy in a wheelchair owning a Doberman Pinscher.   I get that.  I mean…a small guy in a wheelchair walking a Doberman Pinscher on the square will attract some looks!  

On top of that I used to be terrified of dogs!  

So why a Doberman? 

1. Companionship. 

 Dobermans are one of the smartest breeds  in the world.  On top of being watch dogs,  they make excellent companions.  
2 . Activity

For those of us with Spina Bifida, I believe being active is so important.  I have fought kidney stones most of my adult life.  I believe,in part, due to inactivity.   

3. Purpose

Dogs in general give me purpose.   When I had to go on disability,  I had lost my sense of purpose.  For many years after, I remained in a depression.   I was bitter at everyone around me, too.   Then I met a dog trainer who taught me all about dogs.  

Til this day I continue to learn about dog behavior.  She helped me find my purpose.  Now I can help others understand their dogs.  love Chancey and Grace.  Having dogs has been the best thing to ever happen.  They gave me purpose.  Whether you have a disability, or not, having a purpose makes the biggest difference.  If you haven’t found yours; find someone who knows you well. Ask them to help you find it.  It’ll make a difference.  




One night as a teen my family and I, while on vacation, visited a park.  The park had lots of rides.  Many parks like this one allow for people in wheelchairs and their families/friends to go through the exits and get in front of the line.  As a young kid I felt like a king. But this particular night I felt like a tool.  

There was talk amongst the others about wanting to go on this roller coaster that turns upside down.  Some in my family wanted to go, including a friend of my sister’s.  When I would not go that friend tried to guilt trip me into going and was mad that I was steadfast. 

Later she apologized for trying to use my disability to get into the front of the ride.  

It is an honor for me to give people that extra privilege who are with me.  When my friends and I go to concerts, etc., I will often ask them if they want to ride with me so that we can park close.  But when I sense there is an alterior motive, that can be demeaning.  

Privilege? Most of the time, yes.  But sometimes I would just like to wait in line with the others at parks.   






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. 

Above is one of hundreds of photos I have taken the past few years.  I got into photography as a way to take my mind off of a broken heart.   During those days I spent hours upon hours trying to get the perfect shot.  

Here’s a silhouette photo of a cardinal.  I was amazed after I took it. It looked like the cardinal was praying!

Praying Cardinal on a Limb

Chancey, my dog, makes for good opportunities, too.  I tried this composition of one of my former wheelchairs with Chancey lying beside it. 

Chancey by chair black and white

Black and Whites are my favorite pictures to take.  I guess perhaps I’m a little nostalgic. 

If you follow my blog, you’ll recognize this one. I took this, too.  I used the old wheelchair above as my tripod. I asked Chancey to go sit in the spot while I setup the camera shot, setting it on automatic, I quickly rolled up to sit beside my dog.  I was proud of this one, especially.

cropped-cropped-p1010174

I use a Panasonic Lumix 1000 with a Leica Lens. 

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.

One early morning my dog and I drove to the downtown square so we both could get some exercise.  We had a great time of  strolling around the square.   After we finished we headed back to the car underneath the parking deck.   As we got closer to the car I noticed someone had parked within the white lines. (sometimes they are blue)  

These white lines that are between two handicapped parking spaces serve a purpose.  That purpose is for the ramp that comes out for the wheelchair to exit out of the vehicle. 

When another car has crossed the boundary into the white lines, it prevents someone else who needs to let their ramp out and to the pavement to either get out of the vehicle or enter into the vehicle. 

For me, the problem was entering the vehicle as I had just returned from walking my dog.   I was faced with a problem at this point.  

Knowing it was going to be very difficult, I first made sure my dog was safely in the car.  Then I carefully climbed in the vehicle.  Afterward, I had to get on my knees to pull in my wheelchair. Once finished bringing in my wheelchair, I held onto the drivers seat and pulled myself up into my wheelchair. 

Once I was able to safely enter my wheelchair, I noticed blood on my jeans in the knee area.  The pressure from the bottom of my vehicle against my knees from pulling my wheelchair in the car caused a sore on both.

Thankfully I am strong enough to pull my wheelchair back into the car.  This might not be the case for other disabled drivers. 

Please be aware that these lines in the handicapped parking spaces serve a specific purpose.  A purpose that allows the person in a wheelchair to access the parking space.

 

 

 

 

Perhaps you have experienced this, too.   One day I was with someone in a restaurant when the server took our order.  It went something like this:  “What will you have?” (speaking to the person I am with)  Then, “What will he have?”   The server mistakenly thought I could not speak for myself I guess because I had a clear disability.   At first I was offended.  Then instead of letting that fester, I answered the person and gave them my order.  

I remember another time during a church event years ago when one of the people in the group who led the event would not even look at me as I was introducing myself.   That person eventually spoke to me and shared why. 

Yes, there are times when people cannot look past my wheelchair to see me.  If this has happened to you, you know the feeling. 

Lately I have started inviting the servers to have a seat beside me when taking the order.   This helps them get to know me better, and it makes them feel more at ease if they aren’t use to someone with a disability.

Last night I was very impressed with my pastor when I went up to him and wanted to share something deeply important to me.  He didn’t stand there and talk:  he got on the floor and looked me in the eyes and listened.   It’s not always necessary to do this.  But it is a great way to communicate with someone in a wheelchair. 

People will continue to make decisions based on what they see rather than who they see.    I will continue to invite them to sit by me and have a conversation.  That’s one of the reasons I started Roll Model Movement; to build bridges of understanding.   In the words of the Christian music artist,  Matthew West, “Grace Wins Every Time”.