There is so much to do! Are you with me?
In the last month, I’ve spoken with at least a dozen parents who are deep into coordinating fall transitions for their children, and they are exhausted. I am hearing from young moms whose children are back in classrooms for the first time in more than a year. I am hearing from older parents faithfully seeking work, hobby, and entertainment activities for their adult children with disabilities who need appropriate or adapted opportunities to stay meaningfully engaged in their communities. And virtually every family living with disability is desperately in need of more support staff which, for some, also includes home nursing care.
These parents are not just logistically entrenched in the issues of the day, they are significantly emotionally invested.
A caregiver’s work is never complete. And every household has its to do list. But when disability is part of a family, that list is long and growing. It rarely shrinks. As soon as time, energy or finances allow for some catching up, our child invariably faces another challenge, a caregiver gets sick, a nurse quits, or somebody had a long night and needs recovery time. With constant caregiving demands and interruptions, our efforts can seem to be in vain.
At our house lately, there have been medical and behavioral issues to navigate (managing side effects, keeping careful logs, discerning adjustments) and checklists to create (to keep respite providers trained and updated). We also need to figure out winter storage of Carly’s adapted bike so that both cars will fit inside.
Meanwhile, we are tag-teaming constantly just getting dinner on the table or a load of laundry in the washer. One minute Carly is a real charmer, the next, she is marching emphatically around the kitchen scavenging for any food or taking off her clothes when our backs are turned. It’s exasperating!
Just a few minutes ago while I was in charge of supervision. Carly was meandering between a movie and her toys while I was writing this blog and Larry was taking a nap on the couch. Suddenly she sat down on Larry’s face. Thankfully, his glasses were spared — this time — but I had chosen multi-tasking over attentive engagement, and it came with a cost. Ample doses of exasperation all around.
The need for hyper vigilance is physically and emotionally exhausting. Each of us has times when we just want to hide. My own coping mechanisms feature creativity, organizing, updating, and purging. For example, I am anxious to purge a billowing closet of toys, equipment, media and records reflecting her 23 years with Angelman Syndrome.
Especially when Carly’s complex needs feel most out of my control, I am vulnerable to grasping at projects like this.
The truth is, there is a grip of disappointment and a sense of entrapment that get a hold of me. I rely on the project to restore my sense of being in control. At least initially, a tidy and simplified closet (or finished blog) creates the illusion of an ordered, predictable and, dare I say, “normal” life. I might hope that emptying the closet will lighten the load of caregiving responsibilities too. In any case, I convince myself that the project is important enough to justify pausing other responsibilities.
Sometimes I am looking for a distraction from the emotional intensity of hands-on caregiving. But what if the thing I am getting distracted from is freedoms and fullness in life that come from relationships and processing of my emotions in a healthy, complete fashion?
Projects themselves are not bad or wrong. The problem lies in how much power I give them over my inner peace. My efforts may be well-meaning, but my focus is not always well placed. Very often, my projects are just an attempt to run away — from feelings, questions, doubts, sorrow. That’s not really coping. That’s just hiding. That’s just a band aid for the real heart problem I’m having.
Projects can be an attempt to escape, or they can be a way to get some distance from the situation for the purpose of intentionally and prayerfully processing my emotions and letting God mold my perspective. There is a radical difference there. I have to get honest about what needs I’m really trying to meet.
It’s not about the closet.
Our real needs are to yield control and rest in a secure identity.
It helps me to take a daily step back and ask: who or what holds the ultimate power in my life? Is it my lists? Is it my need for closure? Is it my need to feel known and understood? Is it my career? Is it Carly? Is it Angelman Syndrome? Is it grief or disappointments?
The other question I ask myself: who do you think you are? Is disability a life influencing factor or am I becoming dependent on disability to define my importance, sense of value, and personal boundaries?
My project focus becomes intense when my life and mind are revolving around Carly and her needs. That’s giving Carly and her situation a lot of power. That’s giving my projects a lot of power. Matt Maher’s song has been very helpful for me in refocusing.
What are you building your life and family around?
Disability and caregiving do not define anyone’s existence. The Creator decides why you and I exist and tells us how valuable we are (Psalm 139, Ephesians 2:10). If disability is stripped away (and it will be, sooner or later), what will be left if we are not building our families and household systems on the foundation of Christ and His kingdom?
Friends, let’s run to the Father and fall into the grace of His family system.
Now all of us can come to the Father through the same Holy Spirit because of what Christ has done for us…no longer strangers and foreigners. You are citizens along with all of God’s holy people. You are members of God’s family. Together, we are his house, built on the foundation of the apostles and the prophets. And the cornerstone is Christ Jesus himself.We are carefully joined together in him, becoming a holy temple for the Lord.
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.