Chapter 14 – Bring on the turkey and surprises

“wake up sleepy head” I heard my dad say to me as he brushed the side of my face  “your mom sent me to get you ready for the day.”  My dad had helped mom get me ready before, and had changed me on the several occasions that mom was busy, but he had never did it all by himself.

He lowered the side of my crib and got me sat up with my legs over the edge of the crib. “OK, just put your arms around my neck” he said as he wrapped my legs around his waist and put his arms under my butt “I see mom put a cloth diaper on you”

“yeah, it is really thick, hope it held ok”

“well I don’t see any leaks on the sheets” he said as he sat me down on the changing table.  Dad made quick work of getting the sleeper and plastic pants off.  I am not sure the old man was prepared for what he encountered next….. I left a nice healthy load in my diaper while I slept.

“Oh lord you definitely left a load back there, lets roll you over”  he rolled me a little on my left so he could tuck the right side of the diaper under me, and then rolled me completely over on my side, and removed the diaper.  I could hear him still working back there, the sound of the wipes going across skin and being dropped into the trash can.  He rolled me over to my back and handed me wipes, as I tried my best to clean myself up.

“that is all I can reach” I said.

“it’s ok, your mother wants you in the shower anyway.”  Dad took a underpad and put it on my wheelchair and picked me up again and set me in my chair.  “here cover yourself up” Dad said as he threw me a towel and grabbed some diapering supplies.  “Cloth or disposable?”

“Huh?” I said as dad held up a folder cloth diaper and plastic pants and a disposable diaper in his hands.  “oh disposable is ok, I thought mom said she would only use the cloth ones at night”

“yeah I think I remember a conversations about that, I don’t pay attention sometimes”  Dad said as he grabbed other clothes.  “let’s roll.  When we get the shower done, I’ll just change you in our bedroom.  No reason to drag you back through the house just to dress you.”

“got a question for ya.  Cause this makes no sense.  Why is my bedroom on one floor, and the bathroom on the other floor. I mean if I had a room on the same floor, I would not have to go through the kitchen naked”

“uh yeah, we thought of that…. After we remodeled the house.  We were going to switch you bedrooms, but if something happened and you had to get out of the house, it would be better if you were on the main floor.  I think in the spring we will get a small bathroom added on to your room.”

The shower was good, and soon enough, my family members arrived.  My aunts and uncles and cousins were all mulling around the house. Just hope that nobody gets in my room.

It was great to see my cousins, I used to only see them at holidays and family events, but since the accident, not so much.

My cousin Jake was the one that I got along with the most, he was about 6 years younger than I, but we had the same interests; video games, computers, and techy stuff.

My other cousin Troy was a brat, he was a little older than Jake, but was the total opposite of Jake.  He was always in trouble, suspended from school for bullying, setting fires in trashcans, etc…. His mom and dad never thought that he could have done those things.  My other Aunt, Jakes mom never got along with Troy’s mom and dad.

Mom was showing people around the house.  My cousin’s wanted to ride the elevator, but mom said “it’s not a toy, it is for jay’s use only….. ok, and when I don’t want to bring the laundry up”

“what did they do to Jay’s  room” my aunt Rose said

“it was remodeled, but jay asked that nobody go in his room, it is his space, and he wants to keep it that way” mom said

I just hoped her explanation would be good enough.  An hour later I found out it was not good enough, as my cousin Jake and my other cousin Troy came running into the room with troy laughing, “Jay’s room looks like a baby lives in it, he has diapers and a crib”

Come to find out Troy somehow was able to grab the key that was hanging on my chair, figuring that my room with the locked door handle was what it went to.

My face got red, not with embarrassment, but anger “My mother told you that I wanted my privacy and you stole my key and went in there anyway.  So what if what I sleep in looks like a crib, and I do infact have to wear diapers.  What do you think happens when you have no feeling below here” I pointed at the numb zone  “yeah I bet you enjoy making fun of people having to wear them and sit around wet and messy, and be changed by other people.” That was directed mostly at Troy.  I was pissed off majorly, and I did not care.  In this week, I had been laughed at by people who I thought were friends, talked about behind my back with horrid rumors, treated like a vegetable at McDonalds, and now my one basic wish was not honored.

My mom and aunts came into the room to see what the commotion was all about “what is all this noise”

Troy started in, “Mom, he wears diapers and sleeps in a crib like a big baby, we saw them in his room”

Jake just stood there, he could sense that he was going to be in trouble

My aunt Rose spoke first, “so, you two went into Jay’s room, after aunt Karen (my mom) told us all not to go in there”  both Troy and Jake looked down at their feet

“More like they stole the key off my chair and went in there because the door was locked… I checked it when I left my room” I said angrily

“yes, we’re sorry”

Aunt Sharon who is Jakes mom said “Oh Jake, you will definitely be sorry.” she said as she went over to him and grabbed him by the arm “Karen, may I go in Jay’s room. So I can deal with jake”

I piped in “You might as well, everybody else knows what is in there”

Aunt Sharon drug Jake towards my room, as she opens my door, I hear an “Oh My!” and the door slammed shut.  A few minutes later we all heard arguing followed my a snap and a deadly silence then more snaps and crying.  Jake and Sharon emerged about 10 minutes later.  Jake looked like he had been crying.  He was dressed differently.  Looked like his mom has been through my clothes.

“Nice clothes wittle Jake” Troy said in a baby tone

“Now Troy, that is not funny” Aunt Rose said, not even being serious

Standing there was Jake in a visibly thick diaper, obviously one of my cloth ones, and a onsie with a teddy bear on it.  It was so hard for me not to laugh.

Jake plopped down on the sofa and grabbed one of the quilts off the back of the couch; in and effort to hide what he had on.  Troy kept looking at him and snickering.

When troy got up to go in the kitchen, Jake slid over to the side of the couch that I was near “Jay, I’m sorry, man I had no idea what you have to go through each day. It was not my idea to go in there.  Troy is just mean, he wanted to make more fun of you, but I told him no.  I don’t know why he is so mean. These diapers are so thick, but these diapers do kinda feel good in a unique way.  I don’t know why but something feels good about them.”

Just then Troy came back in, “mom said dinner will be ready soon, and we need to get downstairs at the kids table. I wonder if there is a highchair for you two”

I started off through the kitchen so I could get to the elevator, Jake followed me.  I was hoping to get into the elevator and to the basement without having to take anything downstairs… WRONG.  I got to the elevator only to find it was not on this floor, somebody went downstairs and left the door open, so it can’t come back up. Dad was the culprit.  After mom yelled at him the elevator started moving.

While waiting for the elevator mom and aunt Sharon got the food ready to take down, “Oh boys, why don’t you be dears and take this stuff down with you”,  as they brought bowls and trays over.  Troy got loaded down with stuff too.  “and when you get down there be sure to shut the door so I can come down with the turkey.”

Troy took the stairs, so in the elevator was just me and Jake.  I have always been more closer to Jake, as they only live 20 minutes away and Troy lives over an hour away.  “hey Jake, you ought to sleep over some night, we can stay up late and play sega”

“That would be cool, I was going to ask before Troy and I got in trouble, but mom probably won’t allow me to now”

“Well you can always ask her” I said as we got to the basement. “my mom would always be happy for me to have some more interaction than what I get”

“I will try and ask.” Jake said, not certain if his mom would allow him.

Dinner was great, we all ate at the same table like a big family.  About the time we all were done, Jake started squirming in his seat; I knew what was happening when he leaned over to his mom.  “Well go ahead and use it, you got it on” Aunt Sharon said.

He squirmed for a bit more and then finally got still and I heard a little fart and Jake’s face went beet red.  He just messed his diaper and it was noticeable to all.  Troy started waiving his hand in front of his face and pinching his nose.

“Why don’t you two head up to Jay’s room, and I will be up in a second to take care of you” mom said, as if I was the one who just messed themselves.  Granted I probably did need a change.

“I’m first” I said as I got into the room first, and so did my changer

“Where is my mom at” Jake said looking uncomfortable with the mess in his diaper

“she is still downstairs, do you not think I can handle the task.  I am changing him 4 to 6 times a day” Mom said as I laid back and helped mom with my track pants and the snaps of my onsie.  Sure enough I was wet and messy, but my poop don’t stink.  “OK Jake hop up”

Jake moved over to the changing table and as he sat down the mess smashed in ever more.  The look on his face was priceless.  “eeewwww”

Mom got him laid back and unsnapped his onsie and got his plastic pants and diaper off “woah boy that is smelly.  Jay’s don’t smell that bad”

“Hey mom can Jake spend the night?” I figured I would start by asking my mom first

“Jay, we really don’t have the guest room anymore, so he would have to sleep on the air mattress” Mom said as she was cleaning the mess off Jakes backside

“That’s OK aunt Karen, I don’t mind”

“You will have to ask your mom Jake”  Just then his mom walked into the room

“ask me what?” aunt Sharon wanted to know

“Jay wanted Jake to spend the night” Mom said “lift up Jake”

“do I have to wear another one” Jake whined

Mom and Aunt Sharon both said “yes you do”

“I don’t know Jake, Aunt Karen probably has her hands full taking care of Jay, plus I wanted to go shopping tomorrow morning also”

“please mom, I don’t want to go shopping at 6AM, and aunt Karen said it was ok already”

“Oh alright, but you will be in diapers and expected to use them the whole time you are here too” Aunt Sharon said

“hey Sharon, do you think I can grab a ride with you shopping tomorrow, I don’t want to drive James’ truck, and the only other vehicle is the van and I don’t want to take that and leave James and Jay without the chair lift”

“Sure!, do you trust James to change diapers and such”

“Actually he is quite good at it.  OK Jake all done” Mom said as she helped him up and snapped his onsie and patted him on the bottom

By this time, everybody else had dug into the desert, which was pumpkin pie cheesecake. Yummy.  We all sat around for awhile longer till about 8 PM when my cousin Troy and aunt Rose decided to go home.

Mom and aunt Sharon were in the kitchen plotting where to go shopping first. I was getting tired, which was funny as I kept dozing off and hitting the joystick on my chair and moving the chair and waking myself up.

“ok time for you to go to bed, and you too” dad said while pointing to me and Jake  “lets go, in the elevator”

Back upstairs my dad got me changed, and got jake changed.  “so where are you going to sleep at” dad said to Jake

“I dunno, aunt Karen said that there was an air mattress”

“ya know dad, my bed is big enough for two people, it’s not like I am going to fall out of it.  He can sleep at the one end and I can sleep on the other end”

“works for me” dad said as he was finishing up on my diaper “ok, into bed” dad said as he picked me up and put me in the crib, and then jake climbed in.  It really was not that crowded.  I grabbed my pooh bear and snuggled up with him

“good night dad”

“see you two in the morning, if ya need changed, just hit the button” dad said as he turned off the light and shut the door.

“So Jake, why didn’t you put up a fuss about having to wear another diaper?” I asked, seeing that any normal person would have issues with having to wear a diaper if they did not normally need them.  I know I would not want to wear them if I did not have to.

“Well my mom said I was being punished, and it would have done no good.  I dunno, I kinda like the way they feel, they are all soft and thick and comfy; why, does it bother you that I don’t mind wearing them?” he said

“I don’t know, I just know that if I did not have to wear them, I probably would not like to.  I guess it is different when you have a choice”

“well remember my mom said I had to wear them as long as I stayed here, for punishment for coming in your room when told not to.  Though it sucks that troy did not get treated the same way.  He was just as guilty as I was”  Jake lamented

“Yeah Aunt Rose lets him get away with anything sometimes.  I’m sorry you got in trouble”  and I was, I should have been open and honest with my family about how my life has changed.

“Ya know, about all I regret is the spanking, that hurt, but I deserved it.  I said something to my mom that made her mad.  Well I am tired so I am going to try to sleep”

“me too, I just gotta find a comfortable position, which is sometimes hard to do” As I lay there I kinda smiled, I now have a cousin who I am even closer to through a connection of diapers.

Little did I and Jake know, but our moms were listening to the monitor system in my room, and heard the whole conversation

“well I guess little jake is going to probably get some diapers.  Think the medical supply shop is open tomorrow”  Sharon said

“Oh I think it is, maybe you can get him a nice crib like Jay’s too” Mom said while laughing.

“we’ll see” Sharon said smiling

Chapter 13 – True intentions

When mom and I returned home that night, my Grandma, her mom, was already there to help mom prep some of the stuff for Thanksgiving the next day.  I tried to help the best that I could.  At around 9:30 pm, mom turned to me, “bedtime Jay”

“19 years old and I still got a bedtime” I moaned

“ok, cry baby, I will get you in your bed clothes and then you can come back out in the living room” mom said

As I wheeled to my room mom and grandma followed me,  I would have rather grandma not followed, it is bad enough having mom in there changing my diapers

“They really fixed your room up nice Jay” Grandma said.  “It is definitely cleaner than what it used to be, though that bed of yours looks more like a crib”

“see mom, even grandma thinks so!”  At that moment I looked over into my bed and noticed that there was one of the largest Winnie the Pooh bears I had ever seen, and it looked like there was padding around the inside of the rails too.  “moooommmmm!!  What is that?”

“That is the promised surprise, oh and so is the new TV on the wall too. Your dad put it up while we were gone.”

So that’s why she took me out all day, and down to Young’s, trying to sweeten me up.

“Jayson, I  bet you’ve never noticed this,” pointing to a little white box on the dresser across from my bed.  “That is a baby monitor with video. Jay, I have seen you each night since that first night, snuggling with the stuffed animals.  It is alright if you want to regress as a way to cope with all of this, we all understand”

She had me there, I was so embarassed.  I did not want to admit it to her, or even myself, but these last two weeks I had found myself regressing a little.  I was thinking of the bed as my crib, and was dependent on my animals.  Heck in a way I actually liked being changed by mom and dad – it was personal one-on-one time that I had not had in years. It was time when I could actually talk about my feelings about all of this; which accompanied all the mood swings

“It also has seemed to bring you out of that funk you have been in the past several months in the hospital and since coming home”  again she was right  “I have been looking online, and have gotten a few things… I am thinking about switching you to cloth diapers, would you like that?”

“I dunno, will they be thinner, will they leak more or less”

“They will be thicker and not leak as much.  Maybe we can try them just at night.  Grandma has been doing some sewing for you too. She made a few cloth diapers that she thinks you would like, and hopefully are the right size for you and thick enough”

Mom proceeded to pull out a thick cloth diaper that had Tigger, Pooh and friends on it.  All this baby stuff was getting a bit much.

“MOM!! Those look babyish, I am 19 years old, not 2” I said, pouting, though on the inside I thought they looked cute, but I could not let on, lest I relinquish my adult status.

“Oh would you quit being a big baby” She stopped and composed herself as she thought about the fact that her son’s room had a large stuffed animal on the bed, crib bumpers, and she was holding a baby printed diaper “nobody is going to see your diapers anymore than they do normally.”  Which meant just mom, dad, the PT and maybe the doctor’s office nurses.

“It’s not like you roll around the house in just a diaper, or would you be wearing these out, just here at the house” she continued “now transfer over here so we can try this on”

I slid over to the changing table, as I now referred to it.  She rolled me side to side and slid it under me. Then she pinned it tight and put plastic pants on me.  Looking in the mirror on the wall, I looked just like a toddler.  More was to come after the cloth diapers,

“Your grandma and I have been sewing some things for you, and now would be a good time to try them on.”  She pulled out a t-shirt looking garment.  It looked like a baby t-shirt, it had the snaps in the bottom  “this is what they call a body suit or a onsie, basically it is a shirt that won’t come untucked when you are moving in your chair and being transferred, and it should hold your diaper close to your body.”  Mom slipped it over my head and I helped with the arms, then she laid me back and rolled me side to side to get the bottom of it pulled down; then she snapped it up in-between my legs.

If the cloth diaper did not make me look like a toddler, this certainly will.

They continued to try other clothes on me, all in all Grandma made me 2 footed sleepers, they looked to be ones like I had seen at target in the boys department before, but there was zippers in the legs.  I also got some track pants with snaps on the inside legs, several more onsies.  I think the onsies and the pants are going to be nice cause it will help mom when she changes me.

I went back downstairs with them as they finished cleaning the house, I tried to help the best I could, but tended to be in the way when in the kitchen.  Finally I just went in den and got on the internet.  I sent an e-mail off to Matt

Hey man, it was nice talking with you today at walmart, thanks for the shopping help.  I checked with mom and I have the day off from PT on Friday, and mom said if you want to come over you can, just call first.  Let me know if you need my number or not.  I figure we could hang out, watch some tv, play some games on the tv.  Too bad it’s so cold out, cause we got a pool and hot tub, but both are outside.

Hey if you talk to anybody from our class, try to set the record straight about my accident and let them know that I am home and up for visitors if they call first.

See ya

Jayson

 

I surfed around some more, looking at the disabled chat rooms and stuff, they bore me, most of them are so stuck up about things like having others help them; which I have come to really enjoy for somethings that I cannot do on my own.

“Jayson” I heard my grandma call for me

“I’m in the den, but I am coming“ I said as I shut the computer off and headed back to the living room to meet mom and grandma

“I think I am going to head home, it’s getting late.  I know this all is hard on you, but you are such a strong young man, you will overcome the things that challenge you now.  If you don’t like the cloth diapers I made, I will make ones that are plain” Grandma said

I began to feel bad for throwing such a fit about the diapers, which she put time into.  “Grandma, I’m sorry, you worked hard on them, and I will try them.  We can decide on what material later.  I appreciate the work you did, and I know things will get better for me, I just have to press on”

Mom popped her head in from the kitchen where she had slipped off to  “OK, bye mom, Jay, you need to go to bed, busy day tomorrow with all the family coming over”

Begrudgingly I had to agree with her, and went to my bedroom with both of them in tow.  Mom went to change my diaper which was a little wet, but not in need of change “I think your grandma and I will be making more of the cloth diapers and clothes for you Jay, that is if that is ok with you.  Heck Grandma might start making more stuff and selling it online.”  Mom said

“I get so bored being retired”  grandma said

I never knew my mom sewed that much, nor grandma, but looking back I guess they did.  Mom and grandma made mention to getting a website started for making and selling cloth diapers.

I had told mom that on Thanksgiving, I did not want people in my room looking around.  I wanted to keep the diaper and regressing thing private.  Mom pointed out that dad had changed the doorknob out to be a locking one, which she gave me a key to.  Mom said that she would respect my wishes and make sure the door was locked.

That night mom put me in the footed sleeper, put me in my crib and I grabbed my pooh bear and soon drifted off to sleep.

Chapter 12 – out on the town

 

I got a reprieve the next week, only 3 days of PT, since there was the thanksgiving holiday that week.  On Wednesday the therapist and mom decided I needed out of the house, and to try to do stuff on my own.  So mom stocked up a duffle bag with things I would need, one of them being diapers.  First order of business was McDonalds breakfast.  The therapist followed us in her car, while mom drove the van.

I learned quickly that people sometimes will think that since I am in a chair that I cannot think for myself, order for myself or speak for myself.    At McDonald’s mom ordered for herself, and then the cashier asked mom what I wanted. “I have no clue, his appetite has changed so much, why don’t you ask him, he is 19 and can talk”

I ordered the big breakfast with hotcakes, and yes it was soooooo goooood!

Next stop hair salon.  A family friend works in a hair salon, so mom had made an appointment for me.  They really wanted to wash my hair, and I let them…. We just moved the normal chair out of the way and I reclined back…. Oooh it feels good to have your hair washed like that.  I got a nice short haircut, just like I like it.

Next stop library, got to get some books.  Also got some magazines about adaptive living.

The next stop was a drive. We ended up at a nursing home.  Just what I thought, only been back home a week and now they are shipping me off to a home, not really.  The nursing home has an indoor pool that has a lift so I can get in and do some water therapy.  This trip was just an orientation, just to see how things worked.  Seems that there is a group of paralyzed people who do group water therapy on Wednesday mid-days.  I got something to look forward to now.

It was about noon, and I usually get worn out around noon from all the work Nancy my therapist puts me through, but not today.  We said our good-byes to Nancy as we left the nursing home, and drove around the country side for a bit, and that fixed my energy problem… fell right asleep.

I woke up and mom is still driving, ugh I hate to be back seat… I like to know where I’m going.  “Where are we at?”

“You’ll know soon enough”

I noticed the red barns in the distance and a putt putt range, she is taking me to Young’s Dairy.  We got lunch and ice cream, then back in the van.

“now where” mom said

“I don’t know where, but I am probably needing a change” I said, sticking my hands down the front of my sweats.  “all that juice, milkshake, and I think breakfast has gone through me”

“I thought I smelled something funky, but thought it was the farm.  We will go over to the state park and change you there.

Mom pulled into a parking stall on the far end of the lot and came into the back.  This was only the second time since coming home that I have been changed in the van, and the first time I was messy when we were out and about.  The nice thing about track pants is that they come off easily, seeing that hey have snaps on the outside of the legs.

It took mom a bit to get me changed, but with time she should get better; heck maybe someday I could learn how to do it myself.

Our day out running errands was over, now down to business – shopping.  After the change we headed back home to do the grocery shopping  at wal-mart.  Since mom was holding the thanksgiving dinner at our house, she needed to cook the dinner. I also had work to do, per the therapist, shop for myself with very little help.

While rolling around wal-mart, I got a few stares from people who I knew from school and my jobs.  Ran into some friends, many seemed distant towards me, like I was a different person.  I talked with a track team mate, and I found out why.  “hey matt, what’s up” I said

“hey Jay, heard about your accident” Matt said

“Yeah, life certainly deals some wild hands sometimes.  I saw lots of people from our class, but they all seem to be distant”

“well there are lots of rumors going around, somebody started one that you two were drunk and drag racing, another one that you caused the wreck and killed Sam.  I know that neither were true.  You don’t drink and you drive safely too” Matt said

“yeah, I heard about them, really hurts that people believe that stuff.  To be honest, I did not even know what happened during the crash or what it looked like till last week.  My parents refused to let me know the details.  When I got home last Friday we sat down and went thru the scrapbook.”

“You want some help shopping” Matt asked

“sure, I never turn down help.  Can you grab the shopping list in the large part of my backpack”

What I failed to realize is that my backpack has more than just the shopping list in it, it is loaded with diapers and changing supplies; and it was unzipped.  “umm dude do you want me to zip up the rest of your bag, your ummm, umm, ummm, these white things with the yellow lines are showing” Matt stumbled to say

“OH SHIT, you mean my bag is unzipped and my (whispering) diapers are showing”  Embarrassingly I said

“uh yeah” he said  “that might have been why people were looking at you strange.” Matt said as he zipped the bag up   “OK, I got you all zipped up and I got the list”

“thanks, that is kind of embarrassing having them things visible like that.  Here is the list I was given I think all of it should be easy for me to get.  Mom is trying to see if I do my own shopping for things”  I said as I tried to push a regular cart which was not that easy

Finally Matt asked me, “so you have to wear those diapers?”

“yeah, I have no control over my bladder or bowels cause I cannot feel anything below my ribcage.  It is definitely embarrassing sometimes, cause my mom and dad have to help with a lot of things.

The rest of the shopping trip was done with more small talk.  Matt and I parted ways  “thanks for the help man, give me a call sometime, you might be able to stop over.”

“what is your schedule like usually?  I mean you just got out of the hospital and probably not in school.  What do you do during the day?”  Matt asked

Yeah people would not expect me to do much, I mean what could I possibly have to do, stay home and watch TV.   “Well most days I am working out from 9 to noon, then eat lunch, rest a bit and then more therapy.  Right now, I am usually free about 4 PM, if I don’t have a doctor’s appointment or anything.  Just give me a call tonight, and I will check with my mom, she knows what is going on more than I do”

I then motored on down towards the pharmacy to find mom.  While I was shopping in the food section, she was shopping in the rest of the store.  I found here just sitting on the benches in the Pharmacy, no shopping cart, no bags, nothing.

“See Jay, you can shop for yourself” she said

“yeah, but Matt helped me a little with the things on shelves out of my reach.  The shopping carts are not the easiest to maneuver alongside the chair. Or in front of it either, I need like baskets on the side of the chair.  Maybe tie it to the back of the chair and I just toss things back over my head into the basket”

“Hey mom, next time we go somewhere, can you make sure the backpack is zipped up fully, my supplies were showing”

“Oh my, I’m so sorry Jay.” She walked around behind me and made sure it was zipped up.

“Matt saw it was open and zipped it up.  So now he knows I wear them”

“Sorry Jay, he would have found out sooner or later.  We have a few more things and then we can head home”

“Did you even shop, where’s your cart?”

“I already shopped, bought, bagged, and put them in the car.  Even got you a surprise waiting in there for when you go to bed.”

Now she’s got my interest peaked.  We shopped a bit more, mainly diapering supplies, wipes, powder, ointments.  She bought a wipe warmer, not that I could tell the difference between a warm one and a cold one; I think it was more for her benefit.  She also drug me by the clothing section to get some more sleep pants and track pants that were now on clearance… since that is about all I wear these days.

Chapter 11 – The first of many dreams

 

I drifted off to sleep only to awake in a pool of sweat (I hoped) and crying from a nightmare.   Like a scared child I called out, but mom was already there.  I had a dream where Sam was asking me to drive again and I let him, I remember the white sports car and the semi, and then it went black and I woke up”

I guess when I was in the hospital I really never got the chance to dream, cause it always seemed like somebody was checking on me, poking me, prodding me, waking me up just to get a pill to make me sleep.

I helped mom get me from bed to my chair, strip the sheets off the bed…. I got a plastic sheet again – not had one of those for a good number of years. Then got changed; this time I wanted to help more,  I used the grab bars on the side of the table and rolled myself back and forth and tried to help her get the diaper under me, but my dang back brace keeps me from moving my arms and back (which it is supposed to do).

I would get these dreams for a few nights then not have them for awhile, then they came back, but fewer and fewer over the years.

That night I tried not to remember the dream, and when I got settled back into bed and comfortable, I looked over to my left, one of the stuffed animals that I had gotten with some long-gone get well balloons or a card was a Pooh bear; the bear was looking at me.  You know how a teddy bear’s eyes just seem to speak directly to your soul with out them saying a word, well his did.

Then, I did it; I grabbed the Pooh bear and held it close and cuddled with it.  I can’t explain why I felt a bond to that teddy bear, but yet I did.  He seemed to comfort me and tell me in a way It’s going to be alright, go to sleep, I’m here to keep you safe.  As I drifted off to sleep I had a peace come over me, I would get through this, I would be changed from what I used to be, but I would make it through it.

Nobody noticed that weekend that I held onto the bear when I slept, but on Monday when mom tried to bag up the stuffed animals, I threw the Pooh bear back onto my bed “I want to keep this one”  My mom shot me a look  “well what I sleep in looks like a crib, it might as well have a stuffed animal like one”

“Fine, after Christmas, we will look at getting a different hospital bed, since this one bothers you this much” Mom said in an annoyed tone; since I had been calling it a crib the last few days.  “Keep it up and you can have extra PT, maybe I will throw you in the ice cold pool!”

“OK, drill sergeant, shall I drop and give you 20” I said smiling

“Jay I am happy to see your sense of humor coming back”

“me too” I smiled and said

“Oh boy, look at the time the lady from PT will be here soon, do you need a change before you start”

“I dunno, duh, did you forget, no feeling.” I snapped back

without missing a beat, she pulled the front of my track pants down and out and said “nope, your stripes are still yellow”

PT was long and hard, but I was used to it; my arms were so sore…. I was getting upper-body strength to combat my lack of lower body strength.  I was still excercising my legs too, I had a motorized bike that my feet were strapped into and my legs moved.  Too bad the weather was so cold, can’t use the pool, and mom was not too sure about the hot tub.  They talked about enclosing the porch where the hot tub was.  Nevertheless I got in the manual chair and was put into the whirlpool tub upstairs to soak…. That felt so good.

Every day that week I pushed myself to the limits just a little more.  It was all fun and games till somebody pooped in the bathtub.  “I told ya she was working the shit right out of me” I said while laughing.

Mom was trying not to laugh as she transferred me to the toilet to see if the rest would work it’s way out.

After sitting for a bit, Mom wheeled in a new torture device – the stander.  Actually it was kinda cool.  Basically it has some hand grips to grab onto; then I lean over the device; basically it is like bending forward at my hips.  Mom got me cleaned up and into the shower. My trunk holds me up, cause my legs just dangled.  Mom got me cleaned up and into the shower chair.  I can basically wash myself entirely, except for my back.

Chapter  10 – unanswered questions

 

The three of us finished the tour of the house back downstairs.  As promised 6 months ago, dad, mom and I sat down on the sofa; me in-between them like old times.  Dad brought out a scrap book I had not see before.  On the front it said Jay’s fight.

I was floored.  In the entire time I was in the hospital my family, friends, everybody refused to talk about the accident, what my car looked like, how Sam died; nothing about the accident was said.  My parents told me that there would be a time when I got out of the hospital that we would sit down like a family and talk about it.

The photo of my car looked nothing like a car.  All I could see was the rear taillights.  The front of the car was up under the back of the semi, most of the damage was on the passenger’s side.  That is where Sam was.

The crash report says that the semi braked and I went to the left lane to avoid him but his overloaded trailer swung around and pinned my car under the bumper and then rolled ontop of the car.

 

Sam never had a chance; the solid I-beam of the bumper likely hit him in the head or chest and killed him almost instantly.  When the officers arrived, I was on the ground and somebody was attending to me, but nobody knows who he was, as soon as the medics arrived, he was gone.  It was freaky, cause usually people stick around to give a statement to the police, but this guy was gone/

To this day, I still don’t remember anything in-between the brake lights, and looking up and seeing the person holding my head still telling me to lay still, and then waking up in the hospital…… Maybe it’s best that way.

We watched a video tape of the news coverage of the crash, the funeral for Sam.  Mom and Dad both told of how they found out, flying by private airplane of a co-worker down to Louisville; not knowing for sure if I would even be alive when they arrived.

The doctors gave my parents a 25% survival rate that I would make it through the first 48 hours.  Mom had taken pictures of what I looked like, and it was horrible.  I was not even recognizable.

We sat and talked for about 2 hours, crying, laughing, and seriously talking about what all had to be done.  My dad had another 2 weeks off.  Mom would start her job part-time next week.

Thanksgiving is in two weeks, and the normal tradition has been broken, all because of me.  Grandma’s house is not accessible, and the doctors don’t want me jostled too much; so everybody is coming here.  Hey at least I ain’t eating through a tube anymore, cause I love the food for the holidays.    We talked about everybody being at the house and what to expect and such.   Mom broke our little family discussion apart when she looked at her watch.

“Good Lord, we have been down here for 3 hours.  Jay has pills to take, and probably needs “attended to” (another term mom invented to avoid saying I need my diaper changed.)

For the first time I noticed how much my room has changed; or should I say grown.  My small walk-in closet has been enlarged so I can get in and out of it.  Another hall closet has been lost and absorbed into my room.  I got my bed (looks more like a crib), my desk, dresser, bedside table, and this new odd piece of furniture. It looked like a therapy table like they used at the hospital, and that I have in the basement, but not as big.  Looking under it – I knew what it was; yep you guessed it – A CHANGING TABLE!!!

It was long enough that I could lay entirely on it, but was really meant that I just lay on it with my legs hanging off the end.  It was at the height as my chair was, so that was kinda low if somebody is going to have to change me.  The first time I was laid on it, I found out a few more things.  It had a belt to keep me from falling off, and it raises up.

At this point I had just about had enough; between seeing my precious car just smooshed to bits, the news coverage from the accident, Sam’s memorial and the accident report, my room, and my situation.  I had a wet and messy diaper on, the beginnings of a rash (not good when you cannot fell in that area, it can get out of hand quick), and I was tired.  I had held my composure as long as I could about this whole change to my life – I started bawling  “I hate this” I blubbered, “I should have let Sam drive then it would have been me, it’s all my fault, I wanted to get out of town and not come back” I continued to blubber through the whole change.  Recalling that Sam had wanted to drive the car that night, and I did not want him to drive, had he been driving it would have been me in the passenger’s seat.

Being as small as I am, it was not much effort for my mom to pick me up and lay me in my bed and comfort me.  “I know that this is all so hard for you, I know you feel like it was your fault for the accident, even though it was not.  I know you are embarrassed about the whole diaper thing, not being able to control things.  But rest assured in time when you are able to do things for yourself, you can, until then me, your dad and everybody will be here to help you when you need it.  Now I think a little nap would do you well” she said as she covered me up and helped me get my CPAP mask on.

“If you need anything just call out, or hit the red button on the railing” she said as she dimmed the lights and shut the door almost all the way.

Chapter 9 – Home Changed Home

 

I guess I was really tired, cause when we got home, I don’t recall being taken out of the van, brought into the house, or transferred into my new bed.

I woke up in the middle of the night dis-orientated.  I had my CPAP machine on for my sleep apnea, but was not used to my new room or bed.  I felt like I was in a crib.  It seemed like the sides were way higher than a hospital bed; and there were stuffed animals on my bed too. The stuffed animals were from people sending get well balloons and cards and stuff.

I drifted off to sleep, only to be awoken by mom doing a diaper change “I’m sorry, I know you were sleeping so well, but you needed changed and you need to wake up to take your pills”

“ok”, I say against the pressure of the CPAP machine as I reach up and take off the mask, What is up with the rails on this bed, makes me feel like I am a baby in a giant crib, and where did the stuffed animals come from.

“I know the rails are kinda high, but it is so you can better leverage yourself when you want to sit up on pull yourself over in bed; the stuffed animals came with the balloons and cards you were sent while in the hospital, we just didn’t know what to do with them.  OK, all done” Mom said as she finished taping up my diaper “lets get you dressed and tour the house”

“umm this is the same place as before”  I said annoyed

“ummm no, it is not, there has been a lot of remodeling and addition to the house smarty pants” mom said as she lowered the side of my bed and helped me get into a sitting position.  “ok, Jay the trapezes, or the overhead lift did not come in time to get them installed before you came home so I will help you get into your chair.  Just put your hands on my shoulders and then I will slide ya over”

“Mom! This just is not going to work.  You hold onto my shoulders and I will do the sliding”  She fussed abit, but we tried it my way.  Sure enough I was right – Score one for me!!

So far I have made mention to my wheelchair, or the chariot, but not gave much detail.  Since I cannot easily stay sitting up since I have no control over the muscles in my hip area, I needed a chair that can keep me positioned.  I have an electric reclining chair.  I also have to use a over the shoulder harness to keep me sitting upright (think of a racing harness).  Since I cannot lean forward with out falling forward I cannot use a manual chair; and having a power chair that reclines means that if I need to lay back and relax, I can.  I can also recline flat back in order to be changed.

Boy the remodel on the house sure did change it, almost every room was changed in some way or another.  The kitchen was remodeled with counters that I found I could get my chair up to in places like the sink.   Our sunken living room now had a sloped entryway.  And I noticed a new door off to the kitchen.  “what’s that new door?”

“Wouldn’t you like to know” my dad replied

“YES I WOULD!” I shot a look.  “I might have been away for some time, but I still want to know what you have done with the house” I grabbed the door handle and opened it up.  “What the….. is this”

In a smart tone “what does it look like….  I mean how did you think you were going to get to the basement, or upstairs?  Low crawl!”

“Well the thought had crossed my mind, as did the massive amounts of rug burns and splinters”  I laughed.  The elevator was big enough for my chair to go straight in, turn around (zero turn radius like the lawn mower baby!!), and then somebody else could slide in if they were not too big.

 

After being shown how the thing works, which is not hard – hit the button that says basement for basement and garage, main floor for the floor my room and kitchen are on, and upstairs for upstairs.  Mom and I took a ride to the basement, dad took the stairs.  What was once the large family room, looked like a weight room; which I would later nickname the torture dungeon.  The patio doors that went out to our lower deck were still there, but so was a pool and a hot tub.

 

“I hope you don’t mind that we used the settlement money to remodel the house and get the things that are needed for you to do your therapy here at home.”

 

“absolutely not!  That is what it was for, my care and adaptation to my life after the accident” I said

 

Mom piped in “now today and tomorrow are free days from therapy, but starting Monday you will be working out with a physical therapist some, with me some, and on your own.  Also from time to time a nurse will be stopping in to help us all out at least every other day; and you will learn to do certain things that will increase your independence too; like dressing yourself, assisting in changing your your…”

“diapers” I said

“yes your diapers” Mom said uneasily “I know we talked about it, but I just find using that term hard

“well that is what they are, no matter what you call them, that is just what they are”  I  stated.  I was getting annoyed that everybody liked to sugar-coat things and keep things from me like I was 5 years old.

I was not thinking about the next thing, but mom and dad were.  “Son, I know you may not think you can be independent again, but in time you will be, and you will be back to leaving when you please and going out driving around”  my dad said

Driving again was the furthest thing from my mind. “right now for all I care, I am happy to be home, alive, and am happy to not drive”.

Next stop was upstairs on the second floor with the new bathroom.  It had a whirlpool tub that I could transfer into easily and a roll in shower and shower chair.  Gone was the spare bedroom, but there was a new bedroom downstairs that they were working on as it is.

Chapter 8 – The road home, it is a long road too

 

The morning of my actual release the nurses all were nice.  In the morning the nurses came in and got me out of my night diaper, and put me in my wheelchair and took me down to the whirlpool room.  I just love being in the whirlpool, well the part of me that can feel it does.  The therapists say that it is good for my circulation in my legs, which I sadly miss being able to feel.

Before my bath I got a haircut, my hair had been getting a little long.  I had them cut it really short.  Now time for the next part; I got a nice refreshing bath.

I try to do as much of my personal care that I can do, it makes me feel good that I can at least wash myself, my hair, shave my face.

Back in my room I got re-diapered and then dressed.  I was not going out on the town dressed like this.  Sweatpants, t-shirt, and tennis shoes, oh and under it all a nice thick crinkly diaper.  Time to transfer to my chair.

To get from the bed or anywhere to my chair, or vie versa.  I have to pull myself up into a sitting position, and keep myself there; which is not easy seeing that I have no feeling or control  in my lower back to keep me upright.  Now that I am sitting up.  I got options..  I can use a transfer board and slide across it, and hope I don’t do a face plant.  Option 2 is using what is called a trapeze, which takes a decent amount of upper body strength.  Option 3 and my preferred method – use both; ever since I fell and cracked my head open with just the trapeze.

I use the trapeze over my bed to sit up, then jam the transfer board under my rear.  Now There is another trapeze right overtop where my chair should be.   I have a rope attached to this one so I can pull it close to me.  Time to rock!!  I grab the second trapeze and take a swing.  OK, so it is not as glamorous as the tarzan movies.  It is more like a quick bump up and down… I actually don’t leave the transfer board by much.

Ok, I am in my chair and ready to roll.  My parents have been running in and out taking stuff out to the new vehicle, which I hear is a van.

The discharge nurse comes in and says “Here are you walking papers”

Laughing I say “yeah if they could only do just that”

Mom comes back, “well are we ready to go, your father is loading the van up.”

“I’ve been ready for a week or two.  Let’s Roll” I said as rolling past mom and the nurse.  Only been out of the hospital maybe 2 times in the last 6 months, I did not know how to get out of there.  I just knew where the rehab room was, the gift shop, and the cafeteria (late night muchie runs LOL) was.  “Ummm a little direction here please”

“Just like a man, thinks he knows where he is going even when he hasn’t a clue”  Mom said

“Uh huh I hear dat” the nurse said

Finally out to the awaiting van.  Well at least I don’t have to transfer out of my chair to get into it; it has a wheelchair lift.

This whole time I have been in a hospital in Louisville, KY; so there is a long ride back home, and I plan on catching some sleep too. I had mom help me transfer to one of the captains chairs and lean it back.

About 3 hours later mom shook me awake “hey we are going to stop off and get something to eat. Lets get you changed first”

It then dawned on me… where would I change at, it’s not like at the hospital where I was taken to a private location or back to my room to get changed.  The look on my face must have told mom what I was thinking

“Don’t worry, the van has curtains and nobody can see in them, just help me and we can get this done quick”  She laid me back and with some help from me; I was in a clean diaper in no time.

After dinner, I decided to stay in my wheelchair, and just have the back reclined a bit; I soon fell asleep.

Chapter 7 – So this is what I have to look forward to.

 

In those last few weeks my mom seemed to be around more, it did not dawn on me till one morning when she was there when I woke up.  My mom was going to have to change my diapers!!!  After all this, could it get much more embarrassing?

I will admit, my mom was quite efficient at changing diapers, or briefs, or protective garments like people called them.  They were diapers to me, nothing else, just diapers, why hide behind a name like “protective garment”.

My mom helped the nurses with every aspect of my daily routine that week.

I had not seen dad in a few weeks; mom said that he was back home making sure that the house was ready for me to come home, lots of things would be changing at the house.  Mom said my room had to be remodeled, and the bathroom and the entrances into the house too.

This whole time my mom had been either living at the hospital right after the accident, at the Ronald McDonald House, a motel, and finally an apartment with another parent whose kid was in here too.  Dad would come down on the weekends when he could.

His job was nice enough to let him take time off, but it was unpaid, so he had to limit it greatly.

I found out that my mom had to quit her job and get one where she could work from home, in order to care for me.

I later found out that the semi driver and the driver of the white car were both drunk or drugged, the trucker and the white car were speeding and saw a state trooper  ahead and had slammed on their brakes to avoid a ticket or being pulled over.  My dad said that the trucking company had settled for $6 Million to be paid out over 3 years, and the driver of the white car’s insurance was still trying to come to a settlement amount, but that too was in the millions cause the driver of the car was a pro athelete, and had been drunk before.

One day while I was talking to mom about what all happened with the accident, trying to fill in the pieces of what I remember and don’t remember, we got on the subject of the actual accident.  “I don’t remember much of the accident, I remember the white blur, the sportscar that flew by and caused the accident, then the army guy. This guy in camo was overtop of me and told me to keep still but that was it.  Do we know who that was?”  She did not know.  I described him and nobody knows who this person with army fatigues was, there were no first responders in army fatigues…. – We would find later though.

I was supposed to go home on Tuesday, I was so excited.  I had been in the hospital almost 8 months, and I just wanted to get out of here; even if it is in diapers.

Thanksgiving was really close and so was Christmas, a chance to see all my family.  Many of my family came shortly after the accident, but I was so in and out of it with the pain, that I did not get to enjoy the time they were there, nor do I remember much of it.  Too bad that they were not able to come down after I was in rehab.  I missed playing video games with my cousin Jake.

Tuesday morning came, the lab technician came in to take my blood like they do each week, at the crack of dawn, damn vampires!!  The tech walked in and woke me up, “good morning, time to give me your blood.  Smells like you need a change too”

“I figured that, it sucks not being able to do things, and control things like I used to.” I said while choking up a little. “I mean, having to wear diapers all the time is bad enough, but having to be changed like a baby is worse”

“I know things are hard to swallow, but you are not dealt more than you can manage, you made it this far, and trust me, when they first brought you in, you were very bad off.  I have seen other people not recover for your injuries, or take a lot longer.  Look at you, you may be going home today”

“May be going home !!, what do you mean may be… I wanna go home, I am going home today!”

“Well, if your blood work shows nothing wrong, the doctor will dismiss you, but if it does not, they usually make you stay.”

You guessed it, bad blood…. It was Thursday before I got to go home.

Chapter 6 – ewwww that smell

 

While the ability to eat solid, or semi solid food again was great, it also brought on more embarrassment and degradation. For the last 3 months I had been fed through a tube in my stomach; this was all liquid and it came out that way mostly.  Now I was eating things like vegetables, fruit and meat.   These were not going to be coming out liquid.

I remember the day after I had been able to eat something other than Jello and Pudding…. I had a big mac, well it was a big mac to begin with, but I could not open my mouth far enough to eat it, so I made a mess and tore it apart and ate each layer.

That next morning I awoke and something smelt foul; this is why fast food is horrible.  I called the nurse in and she did not have to ask me what was wrong, she knew.  “Oh boy, smells like your digestive system works quickly.  Don’t be embarrassed, we are used to cleaning people up who are incontinent.”

I began to cry, “Why did this have to happen to me, why?” I blubbered; I pretty much was in a funk the rest of the day, not talking much or anything.

Later on the nurse came in with a green pill I had never seen before. “These are chlorophyll, they for lack of a better term make things not stink, if you know what I mean.  The doctor thinks it would be best to have you take these before each meal”

She went on to tell me that they will turn my messes green, but it will not stink as bad, but may be softer too.  She said it might also turn my tongue green too, but that the goal was to make the bowel messes less stinky.  So I took them.

My days started to fly by.  Each day it was the same, get woke up, get changed, eat, work out in physical therapy, eat lunch, work out some more, eat dinner and watch TV.

Probably 4.5 months after my accident, I was transferred to a rehab unit, where they tried to teach me how to care for myself.  That was really hard when I had a hard back brace on that kept me from bending over.

I did learn how to get in and out of bed with the help of a trapeze, but it was hard, and one time I dropped myself and hit my head, which bled a lot and needed stitches.

It was now closing in on 7 months after the day that changed everything, I was getting close to being able to go home. Now that I was able to sit up, eat normal food, and such, I settled into a routine.  I had therapy each day, two times a day, 3 meals, 4 to 6 diaper changes.  Finally! After about eight and a half months, it was time to get out of this joint.  I would still have therapy at home, and probably for the next year have this brace on my back, which keeps my ability to move down.

Chapter 5 – Recovery

 

A few days after the Dr. came in with the news, the nurses started to mess with my breathing machine.  I found out that with my jaw broken, they decided the best way to get me air was to cut a hole in my neck and put a tube in there, a tracheostomy.

I found out quickly something else that would be changing, and I do mean changing…..  I was in diapers!!!  Because of the injury to my back, I would have no feeling from my chest down. This meant that I would have no control over when I had to go to the bathroom.  Let alone be able to move or feel my legs.  This depressed me very much.  I don’t know if the not being able to walk again depressed me more, or the having to wear diapers for the rest of my life.

See, I was a bedwetter till about 13, and I hid the shame of having to wear diapers at night.  I hated wearing them then, and that was only for night time….  Now I was stuck in them ALL THE TIME!!

At least 4 times a day a nurse would come in and unhook the hose from the machine, suction out the hole in my neck and try to let me breath.  All while keeping a close eye on me……  This was also the times, that they choose to change my diapers.  I felt so helpless.  Still not being able to talk other than mumbles, all I could do was listen to my inner voice and cry quietly.

The first several days, I did not last long off the vent, but as the weeks went by, I got up to 1 hour or more, finally one day, about a month after my accident they removed the vent and I lasted the whole day.

Eventually they changed the tube to something that could be capped off, and would be used just to get oxygen if I needed it, and I could breathe on my own,  I could even mumble words through my teeth.

I was being fed through a feeding tube in my stomach, they must have put it in while I was sedated.

I still had oxygen going into my trach most of the day, cause it is a little hard to get all the air you need just through your nose and not your mouth

The first thing I asked when I could talk was “where is Sam?”

 

My mom broke down in tears…….

She did not have to say it, I knew then, Sam did not make it.  With the disheartening news that my best friend had died during the crash, it was worse that I could not say goodbye to my best friend since childhood.  Sam was the only one I ever let stay over at the house, or who’s house I stayed the night at due to my bed wetting; he swore he would never tell another soul, and I am sure he never did.  I had always thought that we both would be grilling steaks with our wives when we were 30 and talking about the best way to do this or that.  Now that will never happen, everything that I had planned out for my life has changed, and will never be the same.

I sank further deeper into depression about my situation. I think at some point for a week or two I just kinda gave up on living, I just did not care what happened anymore.  I requested pain meds constantly, just so that I could be out of it long enough to forget my situation; but it always came back to home.  I would come out of the fog and there I would be, in the hospital, tubes, wires, hoses and diapered.

It seemed as soon as I woke up in the morning, a nurse and an assistant were in my room changing my diapers.  They would take the tapes off the front, then roll me over like a log.  Get the old one out from under me, and then stuff the new one under me; then roll me back flat, then roll me the other way.  This embarrassing task was done 4 to 6 times a day.  Well at least they were just wet, and not messy often.

About 6 weeks after the accident the doctor came in with some new X-Rays and said my neck was better, and so was my jaw.  They wanted to wait for another month (UGH!!) before they scheduled surgery to remove the halo and my jaw wires.

I kept track of the days and hounded the doctors to check my neck and jaw again, finally 3 weeks later they took an X-Ray and scheduled the surgery for the next week

Once again, I awoke groggy, little bit of pain, and still can’t move. I still had something on my neck but not as annoying as that dang halo, my mouth was so so sore. I could not open it up much, it felt very stiff.  I was still on the feeding tube since I had not been able to eat anything by mouth.  Slowly I was able to begin opening and closing my mouth.

As the days turned into weeks, things seemed to come along better, I had sat up the first time in 3 months. I Did not get to sit up much, still very painful, and the first few times I actually passed out from the blood moving from my head down to my feet.  I began to be able to eat normal food again slowly.  But this too brought its own problems.

I had been on liquid formula for about 3 months, so I rarely had a bowel movement, and when I did it was small and liquidy.  Now, I was eating real meats and vegetables, which meant more solid bowel movements.