Being a caregiver is a tiring, challenging and demanding task, while caregiver burnout is a constant threat. In this series of posts, Bobbi Junior brings her unique perspective to bear on the subject of Christian caregiving.
In this entry Bobbi reminds us of the story where first Jesus walks on water, then Peter attempts to do so.
Read Part 6 here.
Bobbi Junior is a contributor to our Christian internet radio station, HopeStreamRadio, through her program entitled “Not Me Lord.”
Contact us if you have prayer requests or questions.
We are exploring the example Jesus set as one who was a caregiver just like many of us.
This exploration began a while back when I realized the life of Jesus was filled with caregiving. To see what I could learn, I went to the gospels and read them, through the perspective of our own family fifteen years ago, when our teenage daughter broke her neck, and was left a quadriplegic.
In this post, we’re going to start with a really difficult premise. At least for me, it was difficult.
Allow The One You Love To Try, And Fail
In Matthew 14:28 Jesus let Peter try walking on the water. Maybe the Lord saw this as a way for Peter to step out, to rely on his own faith all by himself. Jesus encouraged Peter to try, but then helped when Peter floundered.
Draya had two very important needs after she came home from hospital. First, she was now quadriplegic and that meant learning how to live in and care for her paralyzed body. That in itself was huge.
There was a second need, however – perhaps even more important that her physical state, and that was to separate from her father and me, something every teenage has to do.
Every parent out there can probably imagine what this must have been like.
I remember the evening she told me she wanted to join her friends down the street who were having a bonfire. Would the kids know enough to keep an eye on her, I wondered?
Turns out, they didn’t. On this occasion, she sat near the fire, staying in one place too long, not aware that the metal arm on her wheelchair was getting hot. When we put her to bed later that night, to my horror, I found a huge, third degree burn on her thigh.
A lecture almost burst from my lips, but the Lord helped keep my mouth closed. Draya was 17 at the time. She needed to be with her friends. And she needed to learn how her needs were different from theirs. The burn did heal, but it took a very long time. And Draya has never sat still near a campfire again.
Lessons learned in the school of trial and error.
Another thing Jesus teaches us.
Keep Things Simple, Really Simple.
In Matthew 18:2 Jesus called a little child to him, and said,
“Truly I tell you, unless you change and become like little children…”
This makes me think of how complicated we can make our caregiving, trying to recreate everything the person used to be able to do. I learned the hard way that one must begin with the absolute basics – food, water, shelter, clothing.
Those things weren’t as simple as they would seem. Draya had to learn to feed herself. We made a cuff to fit around her paralyzed hand, with a pocket to hold the handle of a fork or spoon. With her bicep, the only muscle left functioning in her arms, she learned to pickup food and get it to her mouth. This is easy for her now, but then, it was a real challenge.
Figuring Things Out
Shelter in the form of making her space accessible became a big deal. It took a lot of time and creativity to figure out how to set things up so she could manage as much as possible on her own.
Clothing was a big deal, too. Finding clothes that were easy to put on, that stayed in place when she was in her wheelchair, AND looked good – she was a teenage girl after all – took a lot of effort, and stretched my sewing skills to the limit. We learned to buy off-the-rack clothes from the cool stores, but then modify them so they wouldn’t creep up her back or down her backside when she was in her chair.
It took a good year to figure these things out. Once that was done, we began to look for ways to add stimulation to Draya’s life. She got bored easily. She wanted to be busy, entertained. I felt guilty pulling away and saying no, so often I tried to do more than I was able.
I learned that the hard way. A Wish Foundation offered Draya a dream trip, and foolishly we accepted. It involved airplanes, wheelchair in cargo, taxi cabs, hotels that didn’t have a lift. I wasn’t ready for that, and we should never have gone. My stress caused stress for Draya, and everyone else as well. Was it a good experience for her? No.
After that, we stuck close to home and found ways to have fun there, always able to get back to her room where we had a power lift to get her in and out of bed, a wheelchair accessible shower where should could have a nice soak, and blessed home care providers who came to help.
There really is no place like home, when caring for someone with a disability, especially in the beginning.
Read Part 1 here.
Bobbi Junior
Read and hear more from Bobbi Junior on the contributor’s page. You can also find Bobbi at her website, The Reluctant Caregiver, at bobbijunior.com
Bobbi’s program, “Not Me Lord” airs on HopeStreamRadio.
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Images:
Bonfire: Tumi-1983
Sewing Machine: Médéric Boquien
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