A parent or caregiver of someone with special needs, needs the ability to bounce back. There was a time we asked each other, “What would it take (not that we want to experience it) for us to hit a breaking point?” We don’t have a list of times we thought we were close, but we do have a few stories that stick with us to help us remember not to quit when things are rough. Here are a few ways we kept mindful of the ability to bounce back.
“Learning to listen isn’t a gift; it’s a skill.” “Anytime is a good time to learn to listen.”
These statements are great places to start in the month of “love” as we share cards, gifts, and time with others. It’s a skill that can be learned and we will be all the better for it. In our family, we are still learning and growing in this area both in our marriage as well as with our grown children, their spouses, the grandchildren, and our son with special needs.
The playground was bustling with laughter and movement, but my boys, then just two and four years old, played in their own quiet way. After a speech therapy session, we stopped at a nearby park, a familiar part of our speech therapy routine when the weather was nice. My older son wandered the perimeter of the playground and discovered sweet gum balls—a spiky green fruit on the gumtree but which dries out and turns brown and drops to the ground.
The lessons I learned while raising a child with EA/TEF have been many and varied. That’s to be expected since our son was born in 1982 with esophageal atresia (EA) and a tracheoesophageal fistula (TEF), two conditions that left him unable to swallow and required immediate surgery. Many of the lessons came about as a result of the surgeries and invasive procedures he endured between birth and age 5. Other lessons came later as he became more independent in adolescence and adulthood. I encourage you to use these ten lessons as a springboard for considering what you’ve learned as well.
Kingdom Focus is what first comes to mind. Those of us who are married and have someone in our life with special needs for whom we have responsibility (often 24/7 and 365!) know that without focus, we are doomed. AND for those of us who are believers in Jesus, we add to that His Kingdom focus and our part in it.
For us, we have 5 top ways to work on our marriage and keep it strong. There are more, of course, but let’s not get overloaded!
As I sat down to share life with fellow special needs parents in this blog, it occurred to me that the best I might offer was a shared prayer for the upcoming holiday season. Perhaps you, too, are thinking out of the box about how to make the most of new and unexpected holiday dynamics. Together let’s pray, Lord, make our homes an instrument of Your peace.
Every August, I get out this story of my son and remind myself that even as the walnut leaves begin to fall, even as I am gripped by the sadness of one kind of letting go or another, it is, in Kairos time, the very first Christmas. When I allow myself to live in the moment, I am in the midst of God's glory.
The emotions I felt at this point were profound, as this wasn’t just another service on another Christmas; this was me and my son, once again in a new church community, strangers in a familiar yet unfamiliar place, trying to find our place. What helped me get through it, what allowed me to get to a place of hope for this new church and my son’s place in it?
As I reflected on Howard Thurman’s poem over the past several days, the proverbial light bulb suddenly switched on in a brain that's been dimmed by the too-muchness of Christmas. The "work of Christmas" of which the poet speaks is what we do every day as we parent children (and adult children) with disabilities.
