You came as a surprise; your life tenuous, your little body limp in my arms. We brought you home, numb and determined, the future unimagined. Your extended family welcomed you with a tenderness tempered by grief. Your church family, stunned, embraced you. You were changing us, even then. Making your mark on our world just … Continue reading To Ben on World Down Syndrome Day
Life With Ben
Ben and the Carnival Fun House
My son Ben loves the county fair. We always start in the animal barns, where he clucks and moos his way down the aisles, the animals patiently letting him pat and talk to them. Then comes the midway, where he has uncanny luck at the games, always coming away with a prize. The rides, however, … Continue reading Ben and the Carnival Fun House
How Heaven Changes Us
I’ve often pondered what Ben will be like in heaven. I used to think that he would still have Down Syndrome, since it comes knit into his every chromosome. But the longer we deal with not just the delights but also the deficits and struggles that Down Syndrome brings, the more I am convinced that … Continue reading How Heaven Changes Us
Hug Status
My son Ben strides through our church like he owns it, seeking out his favorite people to hug. As we have finally emerged from our year-long quarantine, no one is happier than he to have human contact again. Some people with Down Syndrome dish out hugs like candy at a parade. But not Ben. No, … Continue reading Hug Status
Ready to Party
Ben has decided that he wants to die. This son of mine, who lives with a trust I aspire to....he believes in heaven, and can't wait to get there. Why do I find this disturbing? I've watched friends hold onto life with a white-knuckled grip, desperate for healing to come here on earth, grasping for … Continue reading Ready to Party
Listening for Ice Cream
My son Ben has significant intellectual disabilities. As a result, he has a very small vocabulary consisting of only nouns and verbs. If I say, "Do you want ice cream?" He'll respond with enthusiasm. And if I say, "Do you never want ice cream again?" I'll get the same response. He hears "ice cream", and … Continue reading Listening for Ice Cream
Flight
A Great Blue Heron has been perching at the end of our dock lately, so I decided to try to get close enough for a picture. He kept a wary eye on me as I crept closer, finally taking off with his long wings as Ben came clumping down to join me in his dad's big … Continue reading Flight
Conquering the Frog
We took a little getaway recently, just me, my husband and our 28 year old son who has intellectual disabilities. We had planned some fun activities, but from the moment Ben spotted the kiddie pool, it was all he could think about. “Wog” he said, making the sign for “frog” under his chin, “Me!” And … Continue reading Conquering the Frog
If Not For Ben
If not for Ben... I might have continued my education. If not for Ben, I might have become a missionary, a counselor or a linguist. If not for Ben, I might have had opportunities to lead, to influence, or perhaps just to enjoy an easier life. In many ways, Ben has determined the course of … Continue reading If Not For Ben
A Special Birthday
Last weekend marked the beginning of Ben's 28th year on this earth. Although he has accumulated the years of a man, his heart and understanding are that of a small child. Ben's calendar is simple: Starting on December 26, he starts anticipating his birthday. And on June 28th, he begins to eagerly anticipate Christmas. Every … Continue reading A Special Birthday