Caring
“The work or practice of looking after those unable to care for themselves”
The work…the practice. It takes work and practice to care. Do you have it in you? Can you do it? What will it cost you? These are the questions I asked myself and of those caring for Robert.
Let’s start with the cost. It will cost you ____________. Yep, you filled in the blank correctly. Everything. If you accept this service of care for your child or family member with a disability, your time, energy, focus and finances will sometimes be spent. Your privacy will also be compromised as caregivers come and go in your home. However, in my journey I found that God’s mercies were indeed new every morning, even if the morning found me still in Robert’s bed with him following a night of seizures.
Caring work is hard, and practice is constant. Don’t fool yourself. You may not always do it correctly. Your caregivers may not always do it correctly. If the act of true service and caring is ever to work in a medical home and with a team effort, though, vulnerability and grace must be present. Any space where egos exist will not be a space where helpful, impactful ideas are discussed. The medical team which includes the family, does not have time for that when the ultimate goal is to give excellent care. Some of the most caring professionals in Robert’s life are still very much a part of our hearts. They not only cared deeply for him, but for our whole family.
Several of these professionals attended Robert’s “Celebration of Life” service in 2015, reliving the joys and challenges of his life with us and extended warm hugs to all our family members. Going beyond their “duties” in this way was not necessary, but I will never forget the embraces from each of those medical team members. The doctors, nurses, therapists, teachers and family members who had a role in Robert’s development taught me that the job called “caring” takes on different forms.
Some members of his care team stood in the dark places with me as we tried new medications and therapies when previous ones were no longer helpful. Others showed up at our house periodically only to be told that Robert was having a very bad day, and their therapy session with him needed to be postponed. Each caregiver had a job to do. It was their professional work. It was also their hearts of gold that understood the fragility we experienced at times in their offices and in our home. They chose to include all our family in their work and care. It was a beautiful dance of grace and understanding. They didn’t have to show such care, but I don’t think these professionals knew how to work in any other way.
When Chris and I traveled to Chicago this year, I was amazed by how many families I saw traveling with their physically challenged family members. I was so tempted to take photos of the care and kindness that I observed from a distance in the airports and at the sightseeing venues in the city. It was awesome! I knew better than to invade their privacy but wanted those images to stay vividly in my memory. Perhaps my awareness of so many children and adults with disabilities on that trip was just because I haven’t traveled very often, or maybe more and more people are able to access vacation destinations with their family members now. Either way, the images of multiple children in wheelchairs and adults with altered gaits and seemingly autistic mannerisms being so lovingly included in fun adventures moved me deeply. It was a visual explosion of joy for me to observe.
Several times when I was loving on Robert in his wheelchair, in public, with hugs, kisses and the gentle rubbing of his beautiful hair, someone would approach me and say how much they loved watching me care for him. Unbeknownst to me, they had been watching from a distance in that hospital, clinic, dental waiting room or store. It always surprised me that my love for Robert was so apparent from the casual view of a stranger. But, as I watched families in Chicago this year, I found myself more aware of others’ caring, as well. While it may seem apparent how much true care is given to those with challenges in public places, the same care behind closed doors may not always occur.
During these stressful times of the global pandemic, I believe we should be more sensitive to how we care and see others care for loved ones. These last 18 months have been very hard for many families, as levels of care and assistance have changed and needs possibly increased for their family members. Have you seen care being given and received on your journey? Can you help someone whose care for their loved one has been reduced? Good care was an ongoing practice that was woven into my life as we cared for Robert, and it is also a very beautiful sight to see in others.
Caring well for one or caring well for many is a practice that takes time, but it’s worth it. I hope I remember on this “other side” of such intimate care to speak kindly to someone I see who is practicing beautiful care. I hope I will encourage many as so many have encouraged me. I want to be that person, now. My next trip down the street or to another city, I will not take a photo of such an impactful scene, but I will make sure to acknowledge and voice the beautiful care I see being given. Everyone needs encouragement and affirmation. Send a note; make a call; let your caregiving friend know he or she is seen during this unprecedented time.
Let us practice and acknowledge good care for the one and for the many. May it be so in my life and in yours.
Listening Library: For the One (Brian & Jenn Johnson)
“Love one another deeply as brothers and sisters. Outdo one another in showing honor.” (Romans 12:10 CSB)
For the One
Let me be filled with kindness, and compassion for the one The one in whom You love and gave Your Son For humanity Increase my love
Help me to love with open arms like You do A love that erases all the lines and sees the truth Oh that when they look in my eyes they would see You Even in just a smile, they would feel the Father's love
'Cause oh how You love us From the homeless to the famous and in between 'Cause You formed us, You made us carefully 'Cause in the end we're all your children
So help me to love with open arms like You do A love that erases all the lines and sees the truth Oh that when they look in my eyes they would see You Even in just a smile they would feel the Father's love
So let all my life tell of who You are And the wonder of Your never-ending love Oh, let all my life tell of who You are That You're wonderful and such a good Father
Oh, let all my life tell of who You are And the wonder of Your never-ending love Oh, let all my life tell of who You are That You're wonderful and such a good Father Oh, You are wonderful and such a good Father
So help me to love with open arms like You do A love that erases all the lines and sees the truth Oh that when they look in my eyes they would see You Even in just a smile they would feel the Father's love
Even in just a smile they would feel the Father's love
Songwriters: Paul Mcclure / Jenn Louise Johnson
For the One lyrics © Bethel Music Publishing
