Chapter 1 – Friday morning, first day of summer break.
So, this is my life. I turn 13 today, though by some looks, I am still very much a young child. Let me tell you a bit about myself.
The name’s Justin Apton, I live rural Ohio with my mom and dad; yep, only child. I was born with a condition called Spina Bifida, basically when I was born my spine was exposed. This caused me to have no feeling or use of my legs. It also brings on other problems as well, which we will see here shortly. My mom and dad are not my biological mom and dad. I was born to a teenage mother who put me up for adoption, as she could not care for a child with medical issues, nor was she ready for a child. It is probably good that she gave me up, as I was born with many medical problems. I never knew her or my biological dad. I found out last year that I was adopted.
Last month we moved into our brand new house. My grandpa passed away a few years ago, and had left my dad the farm. The farm is 75 miles from our old house. I always had a love hate relationship with the farm….. I like being out in the country, cause we only got out there maybe once a year to see my grandpa; but due to being in a wheelchair, have never been able to get around to everywhere on the farm. We were not going to be able to live in the old farm house, it was old, 2 floors, and not accessible; so we built a new house, and grandpa’s long time hired hand moved into the farm house. I got all my school work sent with us, as mom and dad didn’t want to enroll me in another school for only a few weeks. I got it all done last week, so I have been lounging around the house all week BORED!!!
Since we have been here only a month, I have not gotten to know too many people, but that is going to change tonight, a friend from our new church is going to stay the night. This sleepover might be interesting, as I have never really had anybody spend the night. I am planning on staying up late and playing X-Box 360, surfing the internet, etc… But I am scared that some of the secrets that are contained inside our house will be found out and I will be made fun of.
Just looking at my room, you would think a 3 year old lives in this room…. I have Pooh and Tigger sheets, stuffed animals in the bed, a covered trash can, and other things that you would find in a room of a 3 year old.
I wake up like I do each morning, on my back, legs lying dead on the bed. I take my teddy bear and set him aside and throw back the covers. Here I lay like a toddler, in a onsie and a diaper. Yep I said it, in a diaper and onsie; I have no control over my bladder or bowels, just like a toddler; this is part of the Spina Bifida. The onsie is nice because at least when I am in my wheelchair, my shirt won’t ride up.
I sit up in bed and get things set so I can get out of this wet and from the smell, messy diaper. My normal nightly routine helps with this; I usually have a spare diaper sitting on the headboard or on the bed. After all, why get in my chair, roll to the diaper cabinet, just to transfer back onto the bed to change a diaper.
Somehow my bowel routine or cycle is off….. I usually don’t wake up messy, I can usually get on the toilet and sit for a bit and “go”; but not since we moved to the new house a month ago. I know that not having control over my bowels is normal, but I was so used to getting up in the morning, and going into the bathroom and transferring onto the toilet and just sitting. Now I have to try hard to guess when I need to go, and hope I don’t guess wrong; or I will be sitting in my own pudding-like mess. I guess a messy diaper is better than messy clothes or furniture.
Lately mom has been helping me in the morning getting changed and cleaned up; which I like. It is just too much work to clean up messy diapers. I know that I can do it myself, but I like the help, and it makes me feel little when she does; and I like feeling little.
“Good morning birthday boy. Are you ready to get up?” She sweetly coos like I am still 2 years old. “Smells like somebody needs a change real bad” Which is her way of saying ‘you smell like a poopy diaper.’
“Ugh yeah, I wish I could get my bowels back on schedule. I hate waking up messy, it is just too hard to clean up in the morning” I pout
“well pouting and complaining ain’t gonna make you smell any better” she says “get those snaps undone, you forgot to set a changing pad out last night” she says as she heads for the cabinet that my diapers are in.
I unsnap the bottom of my onsie and slide it up and then off, leaving me in a soaked X-plus diaper, which has a cartoon printed strip on it. Yet another sign of my little child side. I put my bed in the flat position so I can roll side to side better. I grab the rail on the right side of my bed and roll myself onto my side so mom can put the changing pad under me. “Don’t want any poo on pooh” I chuckle and roll back onto my back and grab for the rail on the other side, and mom gets the last part of the pad spread out.
I quickly untape the diaper and start cleaning the front of me with a baby wipe, all the time smelling the mess that is waiting. “OK roll over”
“Well, at least it is somewhat solid, and the chlorophyll tablets seem to cut the smell down a bit” mom said, as she cleaned me up with a wipe. “Are you going to get in the shower, or do you want to get re-diapered”
“Re-diapered, I will shower after riding the quad” I said, getting anxious to get out to the barn and play
“Ok, just got to put some rash cream on your backside, that laying in a poopy diaper all night is going to give you a rash” she said as she grabbed a vinyl glove to put on her hand before smearing Boudreaux’s Butt Paste on my butt. I next heard the sound of diaper being unfolded. Then smelled powder, and felt the top of the diaper against my lower back.
“Ok, roll” and I rolled onto my back and back onto the other side; a quick shake of powder and then onto my back again. “Ok it’s all yours from here” mom said as she handed me the powder.
I made quick work of putting powder on the front, and taping the diaper up snug, as a pair of shorts and a red t-shirt came flying at me. Guess that is what I will be wearing for the day, or until I get it muddy. With that done, I usually get some breakfast, and then surf the internet a bit, and then either lift some weights, or play some X-Box, but today…. I am getting to play on my new toy. Dad bought me a quad last week and I am going to learn to ride.
Breakfast is a fruit and grain bar and a glass of chocolate milk along with a ton of pills and supplements. I am in a hurry to get to the barn.
“Be careful and listen to your father!!” mom yells as I roll out the back door.
In the barn I find dad tinkering with something like he always is. “Hey dad! let’s get to riding” I yell as I slam the door.
“Ok, ok already, your mom says that you are chomping at the bit to get on this new ride of yours, so let’s get to it. Wheel over here”
I wheel over to the ramp that dad had built earlier in the week. We did the ramp rather than an overhead lift because it would make it so I could transfer on and off the quad. More so I could get on rather than off, getting off is easy.
For the next 30 minutes dad helped me get on and off the quad. Basically I have to have my feet strapped down, or they could come off the footrests, and I have a seat with a back and shoulder harness to keep me upright. The transmission is automatic and has reverse too. Everything is on the handlebars too. Finally we went riding, and we rode for over 2 hours till mom called us in on the 2-way. We had some sandwiches, and I got a messy diaper change again – guess all that bouncing up and down shook it out of me. I got a shower and dressed again. My friend Matt from church should be over soon.