I glance across and stare at three of my grown children sitting in the “kiddie” pool with their children. One of them has her arms placed on each knee of her husband’s straddled legs. They are both laughing and multi-tasking by keeping a set of eyes on one child each and conversing. The conversation bounces between my other two children who like wise keep their heads forward watching babies as if they are donning a whistle and a red sweatshirt bearing a white cross; at the same time, throwing their heads back with an occasional relaxed laugh. I shake my head remembering how it was just yesterday I was the young mother standing knee high in the pool, watching their moppet heads bob up and down yelling, “watch me mommy”.
I wish I could hear the dialog. I love to hear my adult children chat about their lives as siblings, their memories of returning yearly to this sunny get away. I can’t hear them however because I am across the pool sitting in the shade with their brother. The one in the wheelchair who can’t stand to sit in the sun, who can’t dip in the pool to cool off, the one who keeps me away from the company of my whole family. We are together but I am somehow banished outside the circle by circumstances beyond control.
Let me take you back to the beginning, it’s been a hard day. It get’s tiresome “making it work” as they say. Making a home that was rented under the promise of being wheelchair accessible work. Yes, I guess anything is accessible if you have enough men around to lift the wheelchair down and up the stairs. Accessible if sponge bathing can get you buy for seven days because the bath chair doesn’t fit in any shower or bath tub. Accessible if you just want to sit and listen to the nice man play his guitar at the band stand. Not so much if you enjoy going INSIDE the boutique like stores. Window shopping is over rated!
The day began with my daily ritual of dressing my son. At home, I have room to walk around his bed. At home, I don’t have a strange overstuffed recliner as well as an armless chair, two dressers, a queen sized bed, and a TV stand in a 12 x12 bedroom. Here in the rental home, I have to half climb ON the bed to dress him and barely have room to lift him up and place him in his chair. Yep, we knocked over the lamp with his feet, I forgot to mention the two bedside tables. Day five, this is getting old. Rental houses suck for the non-ambulatory.
This morning we headed to the Village, a quaint area of cafés and rental shops that try and squeeze a few more dollars out of the weary vacationers. People stroll the little shops, the ice cream salon, in the evenings, not quiet ready to put away the day in spite of rafting or hiking. Or, they stroll in the morning grabbing a bagel and a coffee preparing for the busy day ahead. Tanned and relaxed, Columbia or NorthFace sweatshirt clad, with hands in pockets, the residents stroll the cobblestone like walkways and drink in every drop of mountain air.The ambiance is peaceful and welcoming except, for some reason, my presence disrupts the Rockwellian scene.
There are no walkers, canes, or disabled. I can safely stay in the center of the square, it’s open, but I don’t dare divert. Except…this morning, I diverted. The art faire opened this morning. I was anxious to take in this fun summer event and my efforts to just get my son and I dressed and to the faire did not include breakfast, for me anyway. Everyone was walking around with the proverbial coffee cup, glancing at the booths that had sprung up overnight like flower carts in “My Fair Lady”. I wanted to stroll the booths with a cup of something yummy too. I’ll just bop in to the bakery shop and buy a semi-healthy smoothie I thought. To be truthful, it was the cinnamon roll aroma that snaked through the air and grabbed my nostrils like a cow being lead by it’s brass nose ,ring. I opened the door of the bakery and stood for a second glancing at the line before me. “Could I do this?” I asked myself. “Yes”, I thought. “Should I do this?” Was the next thought. “No” I confirmed. So I did.
The shop was “L” shaped. The entry door was your first step that placed you in the line to order. There were a few people in front of me but enough space to accommodate the wheelchair and my body. Enough space lengthwise but not necessarily wide enough for a two-way pass by, but kind of wide enough. This is where my “screw you” attitude gets me in trouble, “I want a smoothie/doughnut just like all of you, and ______(fill in the curse word) you can just wait behind me or go around for all I care”. So I push his chair a few more feet then, I have to make a ninety degree turn. Now his chair is blocking the fridge that is there for people to grab a water or a soda. It would be blocked by anyone who was standing in line but it’s easier to reach around vertical legs than scrawny strapped in legs surrounded by metal. A desperate mother did however awkwardly, overly apologetically, ask if I would back up enough for her to open the sliding door and get her son a water. I did. I backed up the opposite direction a few seconds later when another mother, awkwardly, overly apologetically, asked if I could move so her son could point out the cupcake he wanted. I was blocking the cupcake cooler. “Move a little forward would you mind?” “Move a little backward would you mind?” “Excuse me, could I just reach around you?” Coffee shops are very intense! Might I suggest a de-cafe next time?
BUT WAIT! There’s more! Behind the counter which was even more crowded than in front, bustled thin (an obvious job requirement considering the size of this place) frantic teenagers; trying to fill orders faster than you can say, “aaa… large, aaa…I mean Verdi”. This isn’t a Starbucks mind you. No place to stand and wait for your cup of Joe to be handed to you in a cup clearly marked with your name,“Hanoi”. Does René sound like that? Anyway, I ordered only a soy-steamer. By the time I actually got to the ordering station, I had lost my appetite and came to the realization that I was really never hungry. I was not hungry for food anyway. I was hungry for the desire to be one of the crowd. I wanted to walk around the art faire with a cup of something and casually “ooh” and “aah” over pottery, polished stone jewelry, and fancy metal creations. I wanted to be a laid back vacationer
She handed me my cup of warm soy milk, please, how desperate was I? I don’t drink coffee or eat cinnamon rolls! I realized that I might have a problem pushing his wheelchair out of this box with only one hand. I sat my warm cup of stupid on the counter less than an arm’s length away, pushed open the door with my back, pulled myself and my son out of the tunnel a.k.a. coffee shop and the door shut. The door with the sign on it that read, “entrance that way” was locked and my drink was two inches away sitting on a shelf behind that locked door. Do I leave my son alone, parked unattended, rush in and grab the cup of milk? Do I dare take him back in? I’m not that crazy or defiant! Fortunately another person soon came out and I was able to grab my milk.
A lovely couple was entertaining the morning crowd with folk music at the band stand. I pushed ourselves over and we sat down. I needed to regroup. I sipped my soy and let the Linda Ronstadt like singer sooth my nerves. My son is fed through a g-tube. His total nutritional intake consists of six cartons of formula a day, divided up into feedings every two hours. Two hours goes by very quickly. Remember what it was like when you were a nursing mother? It’s hard to retrieve your momentum when you have to stop what you are doing every two hours. He was hungry, it was time to feed him.
We left the comfort of our shaded seats. I scoured the area for a private place that I could feed him. I chose the side of a store. Not a lot of pedestrian traffic, secluded. I poured his formula into a larger container and added eight ounces of water. I attached his feeding tube to the button that extends from his stomach and began to pour his version of a soy steamer. His feeding tube holds two ounces at a time so it’s a process. I poured the last two ounces and reached back to put away the bottle in his back pack. As I reached back, his tube separated. I looked back to see formula pouring all over his lap. Feeling now, rather downtrodden, I sighed. I sighed and felt my shoulders drop, my head hang, I was defeated. I gulped back the lump in my throat and told my daughter that I would meet her at the pool. I had to go home and change his clothes. I made it back to the car before just a hint of a tear clouded my vision.
I have to bring him in this rental home through the garage, only one step to accent. I have to take him out of the house backwards through the front door, two steps to lower him down. Back to the 12×12 storage unit known as a bedroom, I changed him and get him back to the car, we are on our way to the pool. I had foolishly transferred my pocket book to a backpack; thinking this would be more “pool friendly”. Now I am standing at the front desk of the pool searching though a gazillion zippered pockets trying to find my wallet to pay for him and I to basically sit on a chair and watch others swim. $50 later, we are inside. I emerge from the darkness of the check in experience into the light of the water park. And light it was. It is now noon and the desert sun is high in the sky. What are the chances of finding an unattended umbrella to park him beneath? Zero.
My daughter in law finally catches a family leaving the kiddie area and snatches one chair under an umbrella. Fast forward, soon my other children arrive and we are back to the beginning of this story. If you remember,I began by telling you that I watched my kids frolic with their kids and even joined them for a few moments, leaving my son in the shade. He would cough occasionally and I would see people sitting nearby shockingly look at him and then sharply look at me to be reassured that I was still on duty.
After a few hours I decided that for $50, we were going swimming. They had a chair that is meant to lower non walking people into the water. You’ve seen them at public pools or the YMCA? This one was placed strangely near the shallow area of the pool and right next to a little slide for kids. The area was filled with children and their parents.
I asked the life guards on duty what the protocol was to use the chair. They summoned another guard who informed me that yes the chair could be moved to another area to use but it was really heavy and a pain to move. Ah huh, tell me about it. Most people just enter the water in that spot and then swim to the deeper section of the pool he said. Most people, as in, no one ever?
They agreed to be helpful and so I acquiesced. I rolled him over to the pool chair, they turned it on, turned it towards me, I lifted him out of his wheelchair onto the hard plastic chair. I quickly buckled the belt and dashed to the stairs to get in the water and guide him into the pool. Mind you, these chairs are meant for people who bend at the waist, not spastic, stiff, 2×4 shaped people. Within seconds he was in the water and I expected him to laugh with delight, relax his stiff body in the warmth and depressurization of the water. He didn’t. He didn’t like it. He whined, he complained, he was even stiffer as his body was uncomfortable with the uncontrollable freedom of the water. He didn’t like the people splashing him either.
I forced him and I to stay for at least a half hour. I didn’t dare ask the kids to help me get him out just a few minutes after we got in. When I felt we had served our time, paid our penance, I motioned for the guards to release us and we floated over to the plastic chair. We had to scurry away the little ones again and a crowd began to gather. Two old ladies actually stopped and planted themselves to watch the show. Children stopped their game of “Marco-Pollo” to see the exhibition. Unaware of the spectacle that we had become, my seven year old granddaughter helped me buckle the strap around his waist. Since he had already experienced this nightmare just thirty minutes prior, he knew what to expect so he stiffened up even more. It was difficult getting him seated in any fashion. We did the best we could and gave the signal to lift the seat. I ran to meet him as the life guards hung on to him by his life jacket. They once again turned the chair away from the pool and I crouched down to get in position to lift him off the plastic chair and back into his wheelchair. As I lifted his wet and heavier body I could tell that my swimsuit was going to betray me. Yes, you guessed it, I can now join the Janet Jackson and Tara Reid club. I totally flashed a nipple to the gaping crowd watching.
As soon as I could release my hands from his body I pulled up my swimsuit and carried on as if nothing had happened. I took off his life jacket, replaced his T-shirt and we walked back to the kiddie pool as if we did this everyday. My chattering granddaughter by my side, no worse for the experience, was gleefully asking me if I could go back and go swimming with her. I wanted to, I couldn’t, I wanted to go home.
I repeated the steps already taken twice today and got him changed and into dry clothes for the evening. We are renting two homes to accommodate our family. We are side by side and the grandkids are loving running in between. Dinner tonight would be at the neighbors. I descended the small mountain called the front porch and pushed him to the house next door. This house is even worse. Many steps. With the help of my boys, they got him into the house to enjoy dinner. When it was time to go, my son and I began to lower him down the steps to reverse the process and exit the home. I lost my footing as lifted the back of his chair, my son had the foot. I had on sandals and my foot slipped. His wheelchair tipped and he fell against the furniture. His chair was laying completely sideways now with his face smashed against the sofa. We were able to pull his chair upright and put him back straight but it frightened him of course and my foot is injured. We got him out the door and I pushed him to our house, pushed him in the house, put him in bed with all the hassle of the other times I had dressed and undressed him today. So that’s it. That was my relaxing, fun, vacation day.
That is what it is like if I leave the comforts of my home and venture out to the cruel world. The world that may have a sign that says, “Handicapped Parking” but not for wheelchairs. The world that legally now lowers a curb but still crams every aisle of a store with items to sell to non-handicapped consumers who can circumnavigate the mess. The world that sets in place a wonderful device meant to look as if it could assist non-ambulatory sun bathers to take a refreshing dip in a pool,but actually is a hassle for the life guards and only assists a few far and few between. Looks good though.
I’ve always loved to travel. I left home at eighteen to see the world and I did. At the age of thirty-two my wings were clipped by the birth of my last child and my travels have never been the same. Now I just want to stay home. It’s easier. I make myself leave, to get off the couch, to disturb his relaxed slumber, because I know it’s good for both of us. I’m not sure though. I feel like today was pretty life threatening and humiliating. Which is worse, a flat butt from sitting on the couch or a twisted ankle from venturing out? Ask me tomorrow.
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