Good heavens, this is not how I expected to title my first blog of 2022! Yet, alas, I’m online today for some “real talk” with friends who will “get it.”
Our daughter Carly is 23 and has Angelman Syndrome. Her needs are complex and relentless. We have been extremely fortunate that she receives government benefits that include county waiver funding. In other words, we have budget to hire caregiver support and respite staff. But having funds available has, for a long time, not equated to finding people who actually want a job.
As a result, we have been significantly and desperately understaffed for most of the last four years. This is a common reality for families hit by the ongoing crisis of a nationwide caregiver shortage. (Caregiver shortages reached an extreme crisis in the US long before the pandemic of 2020. And the situation has only worsened since then.)
I can’t entirely complain. We’ve had a remarkable situation compared to most. The one staff person we currently have has been working full-time weekdays with Carly since soon after she completed her public education and transition program almost 3 years ago. She has become a dear family friend.
During the summers and when Covid shut down universities, we had extra help from a second long-time team member who came back to work while studying remotely. Still, Carly’s needs are 24/7 and our ongoing efforts to recruit support (paid or volunteer) has been accompanied by the sound of crickets. Virtually no response to ads at all for years.
Throughout this time, we have been questioning a lot of things about how our lives and ministry need to change if these circumstances don’t change. Again, it’s been very hard to hear or discern what God would have us do. We pray repeatedly:
Lord, show us the next best step.
The lives of families like ours (consumed by disability issues) can be messy and chronically strained. We are constantly learning how to experience God’s presence, purpose and peace while simultaneously living in the midst of challenges that pull us toward our wits end. We’re left, daily, with questions about how to endure the moment and the future.
Last week, we received news that threw our family into a whirlwind of learning a deeper trust in God—yet again. Carly’s amazing weekday caregiver is getting married at the end of this month. With many upcoming changes in her life, she is going to transition from full time to part time.
I will confess, Larry and I are struggling on several levels and trying to sort out what to do next. We are discouraged, angry (with God mostly), confused, tired, and overwhelmed. Circumstances like this trigger grief, fear, frustration, fatigue, hurts and hopes along with gratitude and lots of questions.
What are we doing about this?
The short answer is, “we don’t know yet.”
The longer answer is this: while we know more every day about God’s promises and character, we still know very little about His ways.
We are waiting on Him while we pray (a lot). We are also trying to give each other space to grieve and process; have lots of heart-to-heart conversations; journal about many feelings, thoughts, ideas, resonating scriptures; ask for counsel from WRIM’s Board of Directors and friends; learn from others who have walked this road ahead of us in wise and godly ways; keep our minds saturated with truth and gratitude; experiment with solutions; anticipate the surprises of God’s love (they will keep coming); continue pursuing a myriad of recruiting strategies; take space to breathe and slow down (it’s helpful and hopefully only temporary to put an autoreply on my email indicating adjusted office hours); the list goes on and on.
In any case, we will hope for the best, but plan for the worst-case scenario. You might say that motto is a matter of survival around here.
“We do not know what to do, but our eyes are on you.”
2 Chronicles 20:12
How can you pray for us?
We surely do invite you to pray with us. And as you do, please pray for other families impacted by disability as well. Anything you might pray for the Jamieson’s will quite likely be a prayer countless others around you need lifted faithfully before God too.
Thank you for praying with us for…
- God’s generous, timely, and well-fit provision of care support for Carly
- Carly’s adjustment to changes in schedule and people — inner peace for her as the Holy Spirit communicates uniquely with our precious daughter
- That Larry and I would respond to all of this with trust, peace, hope, wisdom, discernment, and patience
- That God would give Larry and I supernatural spaces of time, energy and health in caring for and enjoying life with Carly
- Quality sleep for all three of us
- Clarity about priorities, discipline in scaling back, trust in and cooperation with the Almighty Gardener who will prune us well (at least until we have more staff on board and trained, and possibly beyond that too)
- 2022 planning as it relates to personal life and WRIM ministry affairs given the staffing dynamics and the labor market
- Careful listening to how God may want to use this current adversity to guide our hearts and lives, both in the short-term and the long-term — learning to yield to Jesus’ easy yoke in new ways
- Peace and trust in Jesus for our two oldest daughters — Alex and Erin — who live outside the home while caring so deeply about what is happening here
Friends, we need to plead with heaven together for families, ministries, and churches in this respect. There is an adversary hard at work trying to steal momentum in disability ministry on many fronts and around the world. Still, what the enemy means for evil, God uses for good (Genesis 50:20). Always. I know we can trust that.
You can trust that, too.
I can already see the Gardener doing some painful but valuable pruning. Lord knows, we have prayed for clarity about priorities for so long and now we are finding some by being forced into certain decisions while taking others on sheer faith. My family will be working on that “one step of faith at a time” mindset and prayer.
Since I blogged recently about having worship playlists, I’ve been asked about songs I’m listening to. I can tell you that the new Homecoming LIVE album has been on repeat at our house for weeks. And Kristene DiMarco’s Wherever You Lead has been the voice of my depths with Jesus the last several days.
THANK YOU, friends! Larry and I find great comfort in knowing we are never alone in this. Jesus is our ever-present Advocate and Companion. But He has also given us this community — a profound gift!
“The joy of God’s people is not determined by their struggles but by their future destiny.”
—Jon Collins of The Bible Project—
Let’s talk about it.
If you’d like to join me and a few other family caregivers in exploring how to thrive with biblical life principles while wrestling with troubled waters of a special needs family, join us in this safe space we’ve created for such discussions.
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.