One Word

As much as pain, heartache, and disappointment seem to be constants in my life, there is another steadfast companion I have. Jesus. The group Mercy Me sings a song entitled “Even If.” The chorus of that song has become a mantra in my head. It says, “I know You’re able, and I know You can… save through the fire with Your mighty hand. But even if You don’t, my hope is You alone.” If my faith were built solely on my circumstances, I’d have an unstable and crumbling foundation on which to live. Fortunately, my faith is built not on something, but SomeONE. This “Constant” in my life is THE driving force for living and the reason I press on during tough times.

I can recall, time after time, evidence of God’s faithfulness over the past 13 years. When my mom’s accident happened, we had to piece the events together from witnesses and police reports. Although her memory is intact today, she remembers nothing of the day of the accident. We learned that after mom went head-first into a brick wall, she was found unconscious. Someone came to her aid to administer CPR. Someone saved her life. Had she left this earth at that particular time, she would not have been ready to go. Thas was God’s Faithfulness. Another time her life was spared, was after she decided she’d had enough and wanted to take her own life. Her plan failed and she remained, confined to the chair that seemed to be her only support and hope in life. She still wasn’t ready to leave this earth. That was God’s Faithfulness. I can remember numerous times that we’ve called in hospice because we thought her body was shutting down. Each time her life was preserved. That was God’s Faithfulness.

During all those times, I was able to have conversations with mom about being ready to go home, and by home, I mean Heaven. I believe that this earth is a place we are all passing through and our forever home is not made of material things “where moths and vermin destroy, and where thieves break in and steal.”  (Matt. 6:19) Our home is far better than what we see, and it awaits those who have trusted in the One greater than themselves. My mom had not trusted in anything greater than what her eyes could see. Fortunately, I had opportunities to talk with mom about what faith looks like. I shared with her that faith and salvation aren’t about being good, doing good things, or checking off a list. I told her that faith is about a relationship, and the only thing she had to do was enter into that relationship.

My mom was a good person. She did good things. She wasn’t mean or unkind. She was gentle and caring. For a lot of us, we connect our actions with our circumstances, thinking we are in undeserving situations as a punishment or malicious acts of God. Not so. God has no malice in Him. It would be against His nature. Although our faith in Him doesn’t often radically change our circumstances, our faith in Him gives us an eternal perspective and supernatural peace that comes only from Him.

On one particular day, I asked mom if she was ready to go home. I told her Jesus was ready to receive her, and that all she needed to do was accept HIS gift of life and salvation. He was waiting on her, not to be good or do enough, but just to surrender and enter into a relationship with Him. She knew about Jesus. She had seen the change He made in my life over the years. She also followed a quadriplegic and believer online, Joni Eareckson Tada, who spoke of a healing faith in Jesus. She had been to church and heard sermons. She had read some of the Bible. The groundwork had been laid. She said she was ready. We prayed in a hospital room as mom asked Jesus to be her Savior. That was God’s Faithfulness.

I have no doubt in my mind that when the time comes, Mom is ready. Along with her constant misery of being in a wheelchair subject to frustration and pain, she has another Constant deep within her heart, Jesus.

It’s the week before Thanksgiving 2022. Mom is adjusting to her new life in Canton. She lives in a 6-bedroom home with 4 other residents who are there mainly for memory care. It’s almost ironic. Thier bodies work fine, but their minds are going. My mom’s mind is pretty healthy, but her body is useless. I wonder which I would prefer to have the least amount of control over, my mind or my body? I use that word control as if it belongs to me. What things in this life do we really have control over? I often think I have more control than I really do. That’s a topic for a later time.

The caregivers at mom’s new place are nice, competent, and willing to learn. There is much to learn when it comes to the care of a quadriplegic. My mom has no feeling below her neck and doesn’t feel sensations like when she has to urinate. So, she has a suprapubic catheter. This a device that is inserted through her bellybutton to the bladder. It allows for urine to flow from the bladder to a bag that is attached to her leg. There is a long plastic tube that runs from her bellybutton down her leg. It is important to make sure the tube never gets crimped like a hose can do because if that happens, the urine doesn’t drain, and the bladder begins to fill up causing her to have an accident that she wouldn’t even know she had. This happened on one of her first days in the facility. She told me that her bag had not been drained all day. When I checked, I found a crimp in the line. Sure enough, when I unfolded the line, the urine began to flow. I had to share with the nurse so that this didn’t happen again. Learning from our mistakes often the best way.

Not only is the catheter care something to learn, but there is also the communication aspect. Like I said, my mom’s mind is fine, but her ability to get help is extremely limited. If her nose is running, she needs assistance. If she wants the TV on, she needs assistance. If she is thirsty or wants a snack, she needs assistance. She doesn’t have the use of her arms or hands and so she relies on someone for her every need. When she is in her room at the back of the house, she needs to be able to get the attention of the nurse. She doesn’t have the ability to pick up a phone. So, a call button must be attached to her body in some way that she can lift the one finger that has some mobility to press the button. Without the ability to call for help, she gets extremely anxious. Imagine seeing a cock roach next to you and you don’t have the ability to move away from it, or your foot fell off the pedal and you can’t lift it back onto your chair. After a few days, the facility worked it out to have a call button that is accessible to her. Mom’s anxiety is still there, but hopefully lessening.

In addition, there is the daily routine of getting dressed. This requires some skill and muscle because mom is lying on her back the whole time unable to help. Lifting her arms and legs is like lifting with resistance. Her body isn’t just a noodle, the tone that has occurred has caused her body draw in and resist movement. Her muscles have atrophied and have no memory on how to perform regular routines. Getting her dressed takes about thirty minutes when you know how to do it well. If you are unfamiliar with the process, it can take up to an hour. The nurses at the facility, who care for 5 other patients, are learning how to manage their time and get mom dressed properly each day.

Once she’s dressed, it is time to transfer her into her chair for the day. This is another long process if one doesn’t know how or has to use the assistance of a Hoyer lift. The Hoyer lift is a cumbersome, yet useful, medical device that helps in the lifting and transferring of individuals. There is a sling that goes under mom’s body. The sling attaches to boom, or metal bar that extends out from the contraption. Once one has the sling under the body and the sling attached to the boom, mom can be lifted by pumping a device on the lift. A good visual is to think of a manual construction crane but designed to lift a body. Using the Hoyer lift is an adjustment for my mom because my dad, siblings and I used a gate belt to transfer her, which is much faster. We strap a belt under her torso while she is in sitting position, bend our knees, count to 3, and heave her up and over from the bed to the chair. Not everyone can do this safely. So, they are using the Hoyer lift at her new place.

Back home in Rock Hill, dad is improving daily and figuring out life beyond caregiving. He will come visit once he is strong enough. Mom is safe and learning to trust someone other than my dad for her care. She doesn’t like the change. My siblings and I are figuring things out daily and doing the best we can to care for the needs of our aging parents. We are all adjusting to this new phase of life.

Planning for your 50th birthday party, when you’re a frugal introvert, is challenging. I am not one who likes a lot of attention. Nor do I like to attend or host big social events. All that type of stuff makes me uncomfortable and drains my social battery. However, I had decided to step out of my comfort zone and go big. I mean, I’m only going to turn 50 once in a lifetime. So, I started planning. I decided I wanted an intimate dinner setting with the people I loved sitting around a rustic wooden table. I could picture it clearly. There would be twinkling lights, flowers, a farmhouse feel, and maybe it would be in a barn somewhere nearby. I just wanted a slow-paced evening full of joy and laughter where people would come, relax, enjoy a memorable evening and know they are loved. I started a guest list and quickly realized that I would love to sit around a table with more than just a few people. I also realized that I probably didn’t have the budget or time to plan a dinner in a barn with twinkly lights hanging from the rafters. So, I shortened the list, asked my sister to host at her house, and settled for dinner around a couple wooden tables, with a few lights outside on the porch.

The party was scheduled for Saturday, November 12th, the day after my actual birthday. I sent out the invitations. I started shopping. I bought cute napkins and a case of my favorite wines. Things were coming together nicely. Even though it wasn’t what I had originally dreamed, it was going to be a sweet celebration with friends and family. I was proud of myself for stepping out and making something happen that was just for me. Even when I write that I cringe. I don’t like things to be “just for me.” I am one who likes to serve, but this was different.

But then, life was interrupted. About two weeks prior to the party, my dad suffered a stroke and my siblings, and I had to make an emergency trip to South Carolina. My 78-year-old dad, who was my mom’s only caregiver, was now in the hospital with little use of his left arm and lots of looming questions about the future. In addition, this meant that someone had to be at my parent’s home to take care of mom. This exact event had been something my siblings and I had been warning my dad about for years. We knew a day like this would come. We told him he needed to make arrangements just in case. He didn’t. It may have been because it was “easier” this way. Or it may have been that nobody else could do it as well as he did. Or maybe it was too costly and troublesome. Whatever the reason, he didn’t and now the responsibility fell on us kids to make preparations and plans for what to do next.

Caring for a quadriplegic isn’t something just anyone knows how to do. There’s the transferring from chair to bed which requires lifting and shifting dead weight of about 170 pounds. There is the adjusting and turning of the body once she’s in bed, not to mention the mandatory turning during the night to prevent bed sores. There are also meds that have to be administered at certain times, water and food that have to be given, as well as any dressing or bathroom needs that need to be taken care of. Then, there is the morning which is a whole separate routine. Emptying the night urine bag and changing it out to the day bag. Stretching the arms and legs. Changing out of night clothing and dressing for the day. Transferring back to the chair from the bed. Feeding breakfast. Wiping the nose, cleaning the face. Administering meds again. Brusing teeth, brushing hair, applying lotion. Making breakfast and feeding breakfast. The list goes on. My siblings and I had been around mom enough and cared for her on certain occasions that we knew what to do. So, we went to South Carolina and did it. We put our lives in Georgia on hold, which meant abruptly stepping away from work and our families to assist mom and dad. It also meant putting the party on the backburner for a little bit.

When my brother and I arrived in South Carolina, we decided that dividing and conquering would be best. He spent time at the hospital with dad and I stayed home to care for mom. At this point, the future looked bleak. My dad had a 90 percent blocked carotid artery that required surgery and possibly a long recovery.

We stepped into action and started frantically searching for homes that were equipped to care for an elderly quadriplegic. As one might imagine, those types of facilities basically do not exist. There are memory care facilities, places to assist with living, and nursing homes. There were no places, especially in a crunch, that could handle mom’s care. Phone call after phone call we were turned down. Time was of the essence. We knew we had a possible quick fix through hospice that provided a 5-day respite. However, the two closest facilities were at capacity. Fortunately, we got a call from a hospice place about an hour and a half from their home. They had room and were willing to take her for 5 days. It was decided that we would drive mom there and get her settled in until we could find a more permanent place to care for her.

After driving her to the facility in Columbia, SC, my brother and I returned to Rock Hill to check in with dad at the hospital. There was still no surgery date, but he seemed to be doing well and gaining some mobility back in his left arm that had been affected. Things were stable. We headed back to Georgia. My sister would make a trip up the following week to check in with dad, possibly bring him home from surgery and go visit mom.

We were running out of time. Our 5-day respite period was coming to an end. The hospice place could allow her to extend her stay. However, this meant the charge to keep mom there would jump to $300 a day. We had no choice but to extend the stay and pay the money. Dad was finally scheduled to have surgery. The surgery was a success, but the recovery was going to be long. This would mark the beginning of the end of his days caring for mom.

Mom stayed in the respite care for a total of 15 days, at a whopping charge of 3,000 dollars. We finally found a place in Georgia to care for mom. Dad was on the mend, with the help of neighbors. Things were moving in the right direction, except for the party. There was no more time to plan for a party, and there was certainly no energy to host one. So, the party was cancelled, and I was bummed.

The reality of life is often harsh and ugly. Not many want to face it much less read about it. However, writing about it is a different story, and one that I will share because it is healing. For 13 years, I have lived as a spectator, and oftentimes a participant, in the daily struggles of the life of a quadriplegic, my mom.

I remember the details vividly of that fateful day that altered the lives our family in 2009 when my mom became a prisoner in her own body. My dad was on a business trip in LA and my mom was home shopping in Charlotte, North Carolina. My siblings and I were in Atlanta tending to our young families and jobs. We got a call from a nurse that my mom had been in an accident and was unresponsive and surviving on life support in a hospital in North Carolina. We knew no other details. Upon my dad’s return from LA, he would say it was the longest flight on which he’d ever been. The road trip from Georgia to North Carolina felt the same.

When we arrived at the hospital, nothing would prepare us for what we saw. Our mom, the glue of our family and one of the gentlest and most kind human beings we knew, was lying flat on a rotating bed, hooked up to what seemed like a thousand tubes. It took our breath away. We seemed to gasp for air as we watched my mom’s lifeless body slowly tilt from side to side on this strange bed to which she was strapped. We wondered what in the world had happened? We wondered if she would survive? And over and over we asked why? Why? Why? The questions were numerous, and the answers were few. Our hearts were broken, just like my mom’s fragile body.

We would later piece together the details of the day learning that mom was shopping, tripped on a curb, and went head-first into a brick wall. That fateful trip would cause her spinal cord to be damaged and her C2 and C3 vertebrate broken. From the moment she hit the wall, her life would become what could only be described a living nightmare. The days and weeks that followed would bring surgeries, hospital stays, rehabilitation, and lots of unknowns.

To this day, November 11, 2022, she lives in a helpless state with a functioning mind and a lot of frustration and sadness. It is a life that nobody would choose, yet she had no choice. For some reason, these are the “cards she was dealt”, “the valley she would endure”, or the “race she runs.” And every day we watch in pain, STUCK, unable to do anything to change the hand, reach the mountain, or alter the course.

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