How bad is the morale at your house these days? If people are going a little nutty behind your front door, then they are much like the folks here at my house. We’re restless from quarantine. We’re overwhelmed by news and social media. Like most of you, we’re trying to learn new things and make the best of circumstances. But it sure can be exhausting.
My own heart cries out for relief. But this season has been especially hard on our daughter Carly. She is 22 years old with Angelman Syndrome. The last few months have brought her great confusion, boredom, loneliness and frustration. Bless her heart, she is learning to adapt. But she continues to have episodes of negative behavior and her sleep has been more irregular than usual. That means mom, dad and respite staff are tired too and frequently finding ourselves at the end of a rope.
Trying to manage Carly’s anxiety and keep her caregivers content can feel like another full-time job for me. I’ll admit to great impatience in this area because I’m a mom who needs a lot of independence and solitude. I believe I may even be inclined to take on more projects than I should sometimes because they feel like justifiable excuses to escape the weight of certain responsibilities. I confess to sometimes avoiding my role as caregiver and consistently pulling my weight in managing morale at my house. Because I have a servant-hearted husband, I can inadvertently take advantage.
Of course, each of us has our own strengths and weaknesses. So it’s always a good idea to shape roles and tag-team responsibilities according to what best fits each person’s strengths. Still, we have to pay close attention to honoring each other’s needs and energy levels with partnership and grace. Larry and I work at being a complement to each other. But when tensions start to rise, we have to go back to the basics — understanding and cooperating with the unique needs that each person has in this caregiving family.
The road to relief and carrying lighter burdens starts with having a clear and accurate diagnosis of our own unique needs. Each of us needs to recognize, “What is the root of my longing?”
It’s tempting to blame the quarantine for everything. No doubt, we all want it to be over! Yet, in truth, it’s not necessarily that we’re longing so much for the end of quarantine but that we have deep inner hungers for things like:
- More freedom, control or space
- More “real” connections to people
- More interesting things to do
- Times for quiet and times rich with activity
With or without a quarantine, Carly needs these kinds of things in varying degrees. We all do. Now, the isolation and limitations have heightened our existing sensitivities. This season can actually be an opportunity to become more self aware — as well as more aware of the core needs of others.
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
At our house, we are regularly seeking ways to help each other tend to their soul’s longings. It requires more creativity but we are discovering that it is often possible to find reasonably satisfying ways of feeding our soul cravings despite the limitations.
Moms and dads can help kids develop awareness of their true longings too. What a powerful life skill we give them when we do this! These two things lie at the heart of effective self care:
- Learn to take the longings of your soul to Jesus and experience His presence, power and goodness.
- Identify healthy ways to meet your deepest needs so you don’t start seeking harmful/sinful ways of “medicating” those longings.
My husband and I keep learning how helpful it is to study our family and learn what uniquely energizes each of us. Here are some examples that God has opened our eyes to see:
- Carly calms considerably when she can crawl into her dad’s lap and listen to a specific music playlist he created for her.
- Carly likes to be busy with frequently changing activities so we’re finding ways to keep her schedule satisfying and we’ve updated her visual calendar to show new images we didn’t feature on her calendar prior to quarantine (Zoom meetings, Farkle games, Dance parties, car wash, etc.)
- Larry feels more valued and confident when we speak words of appreciation and affection into him.
- I recharge when I have permission and opportunity to retreat by myself to read a book, take a bath or watch tv for about 90 minutes.
- Our sense of isolation or tendencies to feel invisible are best fought through serving others, connecting with friends and family on Zoom or FaceTime, playing games together (even virtually with friends), going for a walk or weeding the garden while on the phone with a friend, worshipping via livestream with our church family.
- Friction between Larry and I is often defused by creating adequate opportunities for intimacy.
Friends, our families are well led when mom and dad are well fed. When we work together in creating an environment that adequately complements each person’s deepest needs, we all thrive.
Be encouraged. It’s a process. My family is not perfect but we’re making progress. More and more often, I feel like the wind is at my back spurring us forward rather than blowing hard on my face and chest. Instead of feeling heartsick from leaning into the pressures of quarantine, heavy news and caregiving, I’m becoming a more intentional and creative caregiver. Honestly, this season is finally making me more reliant on Jesus than on myself.
This season is giving me a more realistic view of my limitations, boundaries, needs and dreams while growing me into the person I’ve always wanted to be — someone who is more trusting of Jesus’ power and concern for us.
2 Corinthians 3:16-18
But whenever someone turns to the Lord, the veil is taken away. For the Lord is the Spirit, and wherever the Spirit of the Lord is, there is freedom. So all of us who have had that veil removed can see and reflect the glory of the Lord. And the Lord—who is the Spirit—makes us more and more like him as we are changed into his glorious image.
LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”