We’re celebrating Carly’s 23rd birthday in 2 weeks. When you have a child with disabilities, birthdays trigger an odd mix of thoughts, emotions, and memories. I find myself experiencing awe and wonder about what God has done in her life and ours for more than two decades. At the same time, I still have moments and seasons of raw emotion — when fears, frustrations and sleep deprivation maintain an unwelcome grip.
Parenting Carly has been like living in a long series of waiting seasons. She wasn’t diagnosed with Angelman Syndrome until she was 2-and-a-half years old. Yet her challenges were increasingly obvious and numerous starting just a few hours after she was born. Those were long and confusing days before explanations came. Still, waiting seasons continued. I struggled for a while to feel bonded with her the way a mom connects with her child. I sometimes waited for friends or family to understand and empathize. I’ve waited for wisdom in decisions about things like medication, therapies, and even meaningful birthday gifts. I’ve waited for help. I’ve prayed for healing. I’ve waited for church to be easier for my family.
I’ve also waited for God to change me. Sometimes a new mindset is needed, or a better way of responding to my challenges. I’d really like to be shaken loose of unhealthy habits and selfishness. So many times, I have taken a deep breath and said simply, “I don’t know what to do, Lord, but my eyes are on you” (2 Chronicles 12:20).
I suspect most parents have sighed a similar prayer at least once.
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The truth is Carly’s situation has accelerated my spiritual maturity and enriched my life in a host of ways. For example, disability slowed me down to appreciate things I may have missed. It completely shifted many of my values. It gave me a more realistic self-image. It exponentially grew my compassion and grace toward others. Living at the end of my rope has taught me how to rely on God and really trust Him. Even when I only have a mustard seed of faith to offer.
The Covid-19 pandemic has been an accelerating event too. For all that has been stolen and broken this year, there have also been some important wins. In many ways, we get to choose what long-term impact it will have on us. This has been part of conversations in disability ministry leadership circles lately too. Consider this example. The church that started 2020 with a 3-year plan for offering online services suddenly found a way to make it happen within 3 weeks. Countless families who had been isolated by disability for a long time could suddenly worship at home. And they received new empathy for their dilemmas.
Now we’ve all been stuck in a waiting season for more than a year. And while warmer weather and vaccines are bringing a sense of hope, many are still languishing in ambiguity about the future. There are some choices to make. This year has invited us to be changed. I hope you’ll allow it to be an accelerating event that moves you toward a life surrendered to God and in richer relationships with others. We’re all in process. We’re not perfected until heaven. But we can choose progress in the midst of everything that keeps us stuck. Because of Jesus, it is possible to be simultaneously both vulnerable and victorious.
I will celebrate Mother’s Day and then Carly’s birthday, caught between all the awe and what’s still raw. I hope you can join me in appreciating that living in this balance is the very thing that keeps us humbly in the sweet grip of our Savior.
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.