I remember when I was a child in elementary school my 6th grade classroom was just around the corner from the Special Education classroom. I was always curious about the students who were in that class. Many were in wheelchairs and weren’t able to talk coherently due to mental disabilities. I always felt bad for them and didn’t want to stare because I knew it was rude, but sometimes I did stare because I really wanted to know their story. Had they been born that way? Did something happen to them that left them with a physical and/or mental disability? What was their home life like? I was an inquisitive child, but my questions were never answered and I never learned their stories. Even as an adult, I would find myself curious about someone with a disability but of course as an adult I had the self-control to no longer stare (or at least hide my stare behind sunglasses). The truth is as humans we are curious about things and people that are different from us or what we know as normal. I don’t think it’s a bad thing but it can definitely become offensive if curiosity becomes nosiness.
Knowing my own mind and how much I wonder about others with disabilities, I thought it would be a good idea to share my perspective on what it is like to live with a quadriplegic spouse. I know that many of our friends and family would love to know, but are too polite to ask. I am very grateful for that because it shows that we are respected by those closest to us. Interestingly to me, it is often a complete stranger that seems to be boldest in asking questions, some quite personal. Let me just offer a quick bit of advice right here…. please don’t go up to a stranger and ask them why they are in a wheelchair, using a cane or have a missing or maimed limb…just don’t. Ask them their name, where they are from, what sports teams they follow, if they have pets, etc. Get to know the person because the wheelchair is just how they get around and the disability is something they live with, but those things don’t define who they are as a person.
A lot of things changed on November 26, 2011, the day my husband Bill became a quadriplegic. The immediate change that we all felt was his absence. When he got hurt our kids were: Ethan 6 (turning 7 just weeks after the accident), Isaac 5, and Grace 3 ½. It was very hard on them to not have daddy at home and they only got to see him once on Christmas day while he was in the ICU. The nurses brought him outside in his hospital bed so he could see his children and get some much-needed sunshine on his face. Daddy wasn’t home for Ethan’s 7th birthday party. My heart was torn between being home that day for the party and being by Bill’s bedside where I had been almost every single day since his injury. The hardest part for me when I would get home from the hospital each night was going into an empty room and sleeping alone knowing my honey was in a hospital room 45 minutes away. We were blessed to have friends and family take turns during the nights to sit with him so he was never alone and I could get some rest. I would come home so emotionally exhausted I would just pass out and sleep through the night until my alarm went off the next morning. I would shower, eat breakfast and spend a little time with my children before heading back to the hospital to do it all again. Our children were really missing both of us, but we had wonderful family and friends that watched them for us while I was gone.
Once Bill was moved from the ICU to a rehabilitation facility, I spent more time home with the kids and took back the role of homeschool teacher, cook and parent. It was tough being a “single parent” while he was in the hospital and really for the entire first year, he was home. He just couldn’t focus long enough to deal with behavior issues so I did it all. While he was in rehab, I saw him every 2 or 3 days as he was busy during the daytime hours with therapy and learning how to live as a quadriplegic.
It was hard to see the strong and independent man I loved become so weak and helpless. It broke my heart to see the struggles he was facing. But as hard as it was to visit him at the different hospitals and watch him struggle through treatments and therapies, the hardest part was when he finally came home after 31 days in the ICU and 42 days in the rehabilitation hospital.
Our rental house wasn’t designed to accommodate a person with quadriplegia. Before we could even get him in the house, we had to have someone build a ramp so he could get in the front door. I was able to find someone to make a modification to the shower we had so we could use a very low sloped ramp to get him into the shower. Looking back now it was so dangerous but by the grace of God, Bill never went over the side of that ramp or tipped in his shower chair. I had to figure out new and creative ways to help him do things that use to be done with little thought or effort. We made that house work for about 3 ½ years before we were blessed with the opportunity to buy a home of our own and make the modifications, we needed for him to live comfortably at home.
We have lived in our home for nearly 4 years now and it has been a wonderful blessing. Before we moved in, we modified the master bathroom to have a roll in shower and changed the location of the toilet to work with an over the commode shower chair. We took out all carpet in the living areas, hallways and the master bedroom and put down laminate flooring which is much easier for him to maneuver on in his wheelchair. A few doorways were made wider but that is all we had to do. The property is fairly large and is almost 100% flat and accessible. We added some cement paths out back and added a basketball court where Bill could play with the boys. About a year and a half after we moved in, we decided to build an office for Bill off of our bedroom. He had been working in the corner of our room up to that point and it just wasn’t ideal. So after about 6 months of construction, he had an office that also doubles as his “man cave” with a ginormous tv he enjoys watching while standing in his standing frame every day. We have modified our home to work perfectly for his needs. The best thing is he can go in and out of all the exit doors without any ramps.
You might be wondering what it is like for me personally to have a spouse that is quadriplegic. It is my greatest joy to be my husband’s helpmate and care giver but truth be told it is a great challenge as well. I never planned to be a caregiver and yet that was a decision I didn’t really get to make; it was just a role that was given to me the day he came home from the hospital. What took a team of nurses, doctors and occupational therapists to do, suddenly fell on my shoulders…just me. It was a lot at the beginning. I would feel so overwhelmed by the end of the day that I would go to the living room, lay on the ground flat on my back and just cry out to God. It was exhausting physically, mentally, emotionally and spiritually. I knew and trusted that God had a greater plan and purpose than my mind could possibly understand, but there were some days when I just cried “why me?” Then I would calm down and say to myself, “why not me?” What makes me so special that I shouldn’t expect the fragments of this fallen world to pierce my life in a traumatic way? I was comforted to know that God was in control and I was not and, in those moments, I would surrender my hopes and dreams the Lord and trust Him. I honestly believed Bill would never work again, we’d be poor and struggle the rest of our lives living on the meager disability checks he received and we would certainly never own our own home. Ha! Those were lies from the enemy with the sole purpose of trying to get me to turn my back on God and curse Him. But I never did, I chose to trust Him even when there were more bills coming in than money in the bank, even when I was so exhausted, I didn’t think I could make it through one more day.
But I always did make it through the next day and then they next and still the next. In fact, I have made it through 7 ½ years by the grace and mercy of God. I have become an expert in taking care of my husband, there is no one who knows his body, skin, supply needs, etc. better than me…even better than he does. When he first came home our morning routine took me close to 3 hours to complete. I would get his breakfast and he would eat in bed so his legs could stretch out straight since they were bent while he slept laying on his sides all night. Then I would get him up in his shower chair, complete his bathroom routine and get him back into bed. Next, I would get him dressed and up in his wheelchair for the day. Then he would get back in bed for lunch and to stretch his legs for about 2 hours. Then I would get him up again until after dinner and after kids were in bed. At bedtime I would turn him and tuck his pillows in all around, make sure his skin was safe and climb into my bed for a few hours. We would wake up every 2-3 hour at first to turn him. He had a pressure sore on his tailbone and we had to be sure to keep pressure off it to help it heal and we had to keep his skin safe so he wouldn’t develop any more sores. Those were some very hard months, a lot like having a newborn. Over the years, our routine has gotten easier as he has gotten stronger and I have learned to do things more efficiently.
After 7 years he opted for a colostomy and supra pubic catheter to make my job easier and make him more comfortable having others help him so I can eventually get away. For 7 ½ years I have not been away from him for longer than 16 or so hours when either of us left early in the morning and came back home late at night. His hope in having the surgeries is to give me the opportunity to go away for a night or two to the women’s retreat at church or just a weekend away with my girlfriends or my Mom. Our morning routine now can be completed in less than 1 ½ hours from waking up to having him completely ready for the day. He is very independent during the day now and because he can drive, he can even go get himself lunch at a drive through if I am unable to be home to make him lunch. At night I help him get in bed so he can stretch out his legs for a few hours before going to sleep. Some nights I help him into his shower chair and help him get into the shower but now he is able to do all his showering on his own. I help him get back in bed, get him dressed and then we just relax. We have the Craftmatic adjustable beds so he can sit up with his legs extended so they can just be straight. We usually spend a few hours watching some tv, talking and just enjoying the calm and quiet in the rest of the house after all the kids are in bed. At bedtime I get him turned onto his side with pillows tucked all around him, make sure his skin is safe and he is comfy, and then I climb into bed and we crash out for the night. He sleeps on one side the entire night and we don’t have to wake and turn him anymore. Glorious sleep!
My husband is a quadriplegic which affects his ability to walk and limits his hand function, but his mind is sharp. He is a wonderful father to our children and we are a great team when it comes to parenting…although these teenage years sure are adding a lot of gray hairs! There are a lot of things he can’t do and I could list them all for you but instead, I like to focus on what he can do. He can be present with our family every day. He works hard Monday through Friday to support our family so I can take care of him and our children. He plays board games, does a morning Bible study and watches movies with our kids. He also is very intentional about taking each of our kids on a “daddy date” once a month, just the two of them. They talk, get some good food and make memories together. Sometimes these are just simple lunch dates and sometimes they are Lakers games or Daddy/Daughter Dances. He makes a point to create a relationship with his children. He also makes a point to “date me”. We try to go out on a date at least twice a month, just the two of us. He also takes our family on vacations to places like Washington DC and Hawaii.
I guess you could say living with a quadriplegic spouse has its challenges, but really any marriage does. We just choose to embrace those challenges and we choose to adapt and overcome. We have found over the years if we choose to laugh more, we will cry less. I would never have chosen for my husband to become a quadriplegic, but now that he is, I choose to be thankful that he is still here and that he loves and appreciates me.
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