As I sat down to share life with fellow special needs parents in this virtual reading world this month, it occurred to me that the best I might offer was a shared prayer for the upcoming holiday season. Especially as it relates to having adult children coming home for visits, many of us can appreciate the mixed blessings and challenges about to come. As parents, we want to make the most of these precious days. For some of us, the pandemic means that sibling visits will be longer than usual. For others, the pandemic is limiting extended family gatherings.
My heart and arms are aching, friends. I can’t wait to hug each of my children. I prefer to do that with them all in the same room.
As of early this week, it has become official. All of my own adult children will be home for Thanksgiving and Christmas this year. One will be here on and off. Another will arrive for an extended stay. Their sister Carly who has Angelman Syndrome, is already getting so excited! An early October snowfall, an inadvertent Hallmark Christmas movie on television and a FaceTime call discussing airline flights and pandemic protocol were her clues that “the most wonderful time of year” is afoot.
Carly is 22 years old and the youngest in our family. Our oldest daughter, Alex, lives about a 25-minute drive from us, and visits home every couple of weeks. Usually it is dinner and game night, but sometimes she brings a bag and sleeps over. She enjoys the bonding time with Carly, but she also understands how rare and valuable that connection is for Carly in this season of pandemic isolation. Oh, how we appreciate her sensitivity and generous caring for her sister!
Our second daughter, Erin, lives in California. We live in Minnesota. This has been the longest period of time Carly has ever gone without seeing Erin, who has historically been home in the summer and at Christmas time. But Erin’s growing up. Work and other commitments are shaping her availability. The pandemic has kept her away since last December, even when a family vacation in California had been expected in May of 2020.
Since Erin is now between jobs, she’s decided to come home for her holiday season visit at Thanksgiving and stay all the way until the beginning of January 2021. A significant influencing factor is that she can pick up some extra income by working with her sister while she’s home. As you might imagine, are we grateful, relieved and excited for many reasons!
Such a long stay, however, will also have its challenges. After all, Erin is twenty-five years old and has been living on her own for about eight years now. She loves her family—dare I say, Carly most of all. But six or seven weeks at home could be asking a lot of everyone. We want and need it to go well. We want her to look forward to coming back next time! So we’ve already been talking about the potential challenges and brainstorming ways to make it as positive for everyone as possible.
We never want either of our girls to come home out of a sense of obligation. And we don’t want them to come home always feeling like they need to step up to caregiving with us. We want them to experience family time that doesn’t feel like work. And we want their relationship with Carly to be on the basis of their full personhood, not defined by Carly’s constant needs. By the same token, we deeply appreciate the respite that comes from tag-teaming Carly’s cares.
The coming and going will create anxiety for Carly. She will love it all, but be somewhat confused by it too. And she will grieve deeply when it is over. A visual calendar on our kitchen wall with laminated headshots of family members and Christmas symbols help her understand what is coming. It also helps her understand the pace of things—how far away an event may be, or how near the time is for someone’s visit. We find that showing Carly only one week at a time lessens her confusion and eases her anxiousness.
There will be a change this year that may also help Carly to regulate her emotions about having her sister back. Erin is going to unpack her bags in the basement guest space, instead of the bedroom where she grew up. Truthfully, this may be more helpful to Erin than anyone else. We all agreed that having a little extra space and being in a different part of the house will keep her feel more independent, and help us all maintain more mature dynamics in our relationships. Perhaps we can play tricks with our minds and moods by changing up the physical and visual surroundings, while asking God to guard our hearts and grow fresh seasons of intimacy within our family.
We don’t have it all figured out yet. But we’re having conversations and we’re praying. Each of our children knows they matter. And they tell us that knowing they matter helps them in the grand scheme of life and being in a special needs family.
Perhaps you, too, are thinking out of the box about how to make the most of new and unexpected holiday dynamics. My prayers are with you.
Lord, make our homes an instrument of Your peace. By your mercy, protect each of us in health this holiday season—health in body, mind, spirit and relationships. Begin now to prepare us for a holiday season that draws us closer to You and to each other. Soften our hearts and grow our compassion for and appreciation of each other. Show us practical ways to celebrate the season that honors individuality and creates safe spaces for things like grief and rest. May this holiday season be a birthplace of fresh gratitude and new hope for our families. Thank you, Jesus, for coming humbly and going out in victory! Help us our comings and goings reflect that we are Yours. AMEN
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.
