February 18, 2011

Life Untailored.

                                                “Untailored Life”
5:00 a.m.:  I rubbed my eyes in disbelief that it could be morning so soon.  I felt like I had barely dozed off when my alarm clock was barking at me to depart from my warm bed.  Once I reluctantly got up, I attempted to motivate myself to be positive since that day was not going to be a typical day at the office.   The residents from my cottage were going on vacation, and I had been invited to enjoy the ride.  I lugged by bags to my car and left my home for a weekend adventure in Bowling Green, Kentucky.
6:00 a.m.:  I grabbed a cup of stark black coffee and contemplated the need for one or two sugars, I opted for two.  Once I’m clocked in, I headed over to cottage D at Wendell Fosters Campus for Developmental Disabilities, where seven of the fifteen residents readily awaited their sweet escape from their home.  I check the assignment book to see which residents I would be responsible for.  Surprised, I saw that the names of two boys.
 “Sabrina, I’m sorry if this makes you uncomfortable, but there are only so many girls, and you work so well with them.  We thought you could handle it,” said my Assistant Program Director, Lynette.  I forced a patient smile and said that it’s no big deal, truly it wasn’t, it was a part of my job to assist everyone not just those who I could lift by myself.
6:15 a.m.:   “Do I have to sleep with YOU?” He questioned. I smiled and said, “Good morning sunshine.”  I assured him that I had all of my shots, including my cooties vaccination.  His frown turned into a subtle smile.  It gave me hope that my day had a chance of turning around.
8:00 am:   “Are you gonna take picture of me on a rollercoaster?”  My resident asked the question as I had been assisting him with his bath.  He was apprehensive about going on vacation, but rather than show his nervousness, he was asking me questions about our itinerary. I smiled and continued to answer his question and promised that I would gladly take his picture.  This posted a large grin across his face.  Once again, I’m reminded that smiles like that were why I loved my job.  When the vans were stocked with residents, direct support professionals, nurses and all of their belongings, we were off.
11:00 am:  “This is bull, I need a cigarette,” grumbled our driver Jessica.  This was not the first time I had noticed that not everyone was as happy to be there as I was.   After being in the van for a while it was time to get out for lunch.  It was at this stop I realized how much of a process the entire vacation was going to be.  Unloading the vans meant unbuckling each wheelchair from clamps and tie-downs, lowering each resident from the ramp, and somehow in all of this, keep everyone together.  Once we were done unloading, I realized this took up thirty minutes, just to get into the mall.  Once we were in, the residents had to be checked and assisted to ensure they were dry, content, and got their medication.  This process was a challenge considering the average restroom doorway wasn’t wide enough for a wheelchair, let alone the bathroom stall being large enough to assist the person. 
11:45 a.m.:  When we left the restroom, I noticed that all eyes were on us.  Everyone stared at our posse of seven residents, with all but one in wheelchairs.  I felt my resident tense up as we sat down to eat and those around got up and left.  She looked at me and reached for my hand, with a look of discontent and sadness.
  We decided to eat at the mall since we were already there, and began the process of lunch.  As nurses and direct support professionals, we had to decide what each resident could eat and prepare it in a way that was safe for them to ingest.  Putting each person’s food into either bite sizes or pureed in a travel size food processor.
3:00 p.m.: We were finally at our hotel.  Already exhausted, we began the laborious task of unloading the vans.  But this time, instead of barely squeezing wheelchairs and ourselves into the bathroom stalls, we could barely maneuver in our “handicap accessible” room.       
            “This is supposed to be accessible?” remarked my roommate and fellow direct support professional, Jennifer.  Our disbelief continued when we realized we were going to have to team lift the residents from their chair to the bed, and back and forth without a mechanical lift since the legs of the lift wouldn’t fit under the bed. As soon as the residents were laid down, we all fell asleep for a much needed nap, because our “vacation” had just begun.  At this point, my resident didn’t care that he had to sleep next to me; he was just happy to be comfortable and relaxed.
6:00 p.m.: We begin to unload the residents for our first activity, a Bowling Green Hot Rods game.  Unlike the other places, this place was catered to entertain spectators of all abilities.  When we entered; there were ramps, wheelchair accessible seating close to the field, and restrooms in which were clean and user-friendly.  We bought hotdogs, nachos, and popcorn.  The smells of summer, baseball, and happiness were all around us.  This would be the last time on vacation when we would feel accepted, like vacationers enjoying our trip.
10:00 p.m.  “We will alternate checking the residents every other hour to ensure they are okay and dry,” offered Jennifer.  We coordinated our phone alarms to go off accordingly, unfortunately she must have been much more tired than she had known.
2:00 a.m.:  “Safffrina..Saffrrina..I not comfortable.” I groggily woke up, and reassured him that he had just been repositioned and should rest up since he had such a big day tomorrow. While I was up I checked both of my residents, they were both doing well, I turn off Jennifer’s alarm, there was no sense in both of us being awake.
3:30 a.m.:  “Saffrina..Saffrina..I wanna go home.”  I once again talked about how much fun the next day was going to be and told him that it is late and time for him to go to sleep.  Once I had gotten comfortable again, I realized that it was my turn to check the residents, both of them were wet.  The rest of the night I continued the cycle of waking and checking every hour.  The next days’ activities were about to begin before I would have a chance to sleep.
8:00 a.m.:  Jennifer woke up suddenly, “oh my gosh, Sabrina I’m so sorry I can’t believe I didn’t wake up, did you really check every hour?” I assured her that it was fine and that I really couldn’t sleep anyway.  Honestly I really hadn’t minded.  I had never realized how loud my residents breathing treatment machine was.  Beyond that, he had to wear the mask all night, every night.  I couldn’t sleep, and the mask wasn’t even suctioned to my face.  After we both motivate our bodies out of bed, we begin our day and got our residents ready which meant bathing, dressing, and feeding.  That day we were going to Beach Bend Park, which meant we had to pack everything double since we would be enjoying the water park.
11:00a.m.:  After riding several rides, we decide to take a break from the severe heat by dipping into the pool.  I assisted with getting the female residents into their swim suits, once again, in compact and unsanitary restrooms. Once everyone was ready, a few other direct support professionals, myself included, sat in the water while others lowered the residents into our laps.  My resident got so excited she began cry.  The only opportunity she got to be submerged in water was during her bath time.   Even then she could only have water up to her legs because of her gastric feeding tube, but that day she could enjoy the water because the nursing staff had concealed her tube site so she could take a dip.  Once again, like at the mall, once people saw us they began to leave the area.  I heard a little girl complain that she didn’t want to leave and her grandmother scolded her and said was she didn’t want her around “them.”  I disregarded the woman’s ignorance; and my resident and I played in the water as she continued to laugh so hard tears rolled down her face.   Our day at the amusement park was filled with disappointment of not being able to get residents on rides due to lack of ramps, space, or ability to get them on the rides.  The resident who desperately wanted his picture taken on the ride couldn’t because his wheelchair was simply too wide.
1:00p.m.:  As we were waiting for our vans to pull up, I had finally hit my breaking point.  I was frustrated for our resident’s; they had not been able to participate fully during the vacation with the exception of the baseball game.  I had always told myself, “If I feel bad for someone, then I won’t be able to help them, I will do it for them.” It’s not that I felt bad for any of the residents, because the majority of them were very happy on an everyday basis.  I was more upset from the journey I had been on, the exhausting vacation that put me into the reality that they braved, every single day, of squeezing and maneuvering in a world not tailored for them.  Stalls were made small to cut costs.  Ramps were neglected to speed up construction.  If general construction of the buildings didn’t fail us, then the unnecessary glances of others disapproval did.  At that moment, I looked down at the beautiful little girl with brown ringlets springing out of her ponytail, sitting in her bright yellow wheelchair. She gave me a smile that could melt the sun, I picked her up out of her wheelchair and carried her up the steps, because there wasn’t a ramp that she could get up herself, and together we rode one last ride.  The shrills and laughs of just one ride on the coaster made our trek from Owensboro, Ky with lacking sleep and the hike up the steps all worth it.

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