It’s been less than 24 hours since I returned home from a 10-day stay at the hospital with my daughter. This visit included three brain surgeries, numerous scans, and IV therapies.
All I can say is: advocacy is exhausting.
Advocating for seriously ill family members who are hospitalized presents many unseen challenges — lack of sleep, nurses and doctors coming into the room at all hours of the day and night and noise and lights which continue into the night.
There are also other more personal issues that come with hospital stays for both the patient and their advocate like using the bathroom while really smart people are standing outside the door hearing you pee.
The list goes on and on and will likely be racing through my stream of consciousness until I’ve spent more time outside listening to the birds singing, had enough fresh air in my lungs and sun on my face (and wine) to remember that there is no place like home.
When I woke this morning thinking about the past two weeks and my role as my daughter’s advocate, this scripture came into my mind:
“And I will ask the Father, and he will give you another advocate to help you and be with you forever.” John 14:16
This was one of Jesus’ parting promises for His disciples; He promised to send the Holy Spirit as an advocate to assist them and accompany them in life on this journey back to heaven.
Other translations describe the Holy Spirit advocate as the helper, comforter, counselor and/or paraclete who walks alongside and speaks on behalf of another.
Our perception of the Spirit as a pretty dove that rests on our shoulders or feeling which calms us in our trials limits our understanding of the role of the Advocate and the gift of advocacy operating in our lives.
Jesus knew that His disciples needed more than a good feeling to carry out the mission of love He left them. He also promised that “if the world hates you, they hated me first” (John 15:18).
Indeed, many of the disciples became martyrs for the faith and even today, there are Christians who give their lives rather than renounce their faith in Christ.
The definition of advocate includes verbs: to speak, write in favor of; to defend, argue for and as a noun is a person who actively does these things. Related words include a promoter, proponent, defender, supporter; to urge, uphold, support, encourage, tout, recommend, propose, push, further, promote and defend.
These words help to expand the breadth and depth of our understanding of the role of advocacy in our lives. The role of advocacy — in the church and in the world is a messy business and not for the faint of heart.
I believe every person is called to advocate for oneself and to stand at the ready to defend others — especially our loved ones in need. We are each born with an inherent will to survive and a certain compassion for the well-being of others.
And some people — like me — see injustices and have a deep desire to defend others. It’s a gift and a cross really; it means I’m always in trouble with someone. A person who advocates for others is rarely liked by everyone and often disliked at some point depending on their point of view.
We often see a bigger picture beyond our own struggles and a desire to help others who may be in the same situation. It’s empowering and annoying all at the same time. For example, when I am struggling to advocate for my daughter’s healthcare decisions, I’m thinking of ways hospitals could improve how they serve the needs of people with cognitive disabilities and support the family caregivers who love them.
For example, I would like to see electronic medical records include a profile for communication that must be at the top of every chart — like a red flag that alerts the medical professionals that this person needs assistance expressing their needs and elicits contact with an advocate or family caregiver.
Hospitals already use this tool for people who don’t speak English. At NYU, there are translators available in almost every language imaginable. People with cognitive disabilities need advocates in the same way.
Despite the fact that I detail my daughter’s communication and cognitive needs in numerous places on a specially designed medical narrative, she is often misunderstood. I recall one hospitalization when I left Johanna’s bedside to get a cup of coffee. She was watching one of her favorite PBS shows — “Magic School House” — and happy for the distraction.
I told the nurse I was leaving for 20 minutes to take a walk. When I came back, there were four doctors standing at the foot of Jo’s bed asking a lot of medical questions she couldn’t answer.
I saw the look of panic in her eyes as soon as I walked into the room.
Times like these happen more frequently as the gap between Jo’s cognitive abilities and chronological age widens. My role of advocacy in these situations includes making informed healthcare decisions while including Johanna in as much as she can comprehend and making the hospital stays less stressful and fun.
When Johanna was younger, we had the support of pediatric care and Child Life programs which supported both the patient and their family. Adult floors are just not as much fun. So we bring the fun. I arranged for artists and musicians — some who were personal friends — to come and visit and fill the role of these creative programs Jo experienced when she was a child.
And talk about fun — there’s Rae, Jo’s service dog who finished up National Service Dog Month with a bang by sleeping at Jo’s feet in the neuro-ICU, careful not to disturb the drains and lines running from her brain and blood. In addition to providing Jo with support during these stays, Rae becomes a therapy dog to other patients and family members as we walk the halls and greet them in the elevators.
I believe each one of us was created to advocate for someone or something at some point in our lives. It may be that we need to speak up to make our own needs known or reach out to share our gifts and talents to advocate for someone else with greater needs.
Whether for ourselves or others or for the good of a cause, advocacy expands our view of what we thought was possible to include what we once thought was impossible, giving us strength for the journey.
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