To Ben on World Down Syndrome Day

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 by existing.

We fought for you, through open heart surgery, for your right to attend our local school, to be included on local sports teams. For your place.

You rallied people around you. Your classmates and teammates instinctively adjusted to your quirks and challenges, supporting you and cheering you on.

Your presence changed us all for the better. The school troublemakers became your guardians and your heroes. Sunday School teachers worked hard to show you Jesus, the children’s choir learning signs so you could participate. (You thought it was more fun to show us all your belly button at the Christmas program while everyone else signed and sang dutifully behind you. But still.)

You charged off to high school, found the biggest, baddest guy on campus and made him your friend. Owned the basketball team. Sat with the popular people at the football games. Danced with the pretty girl at prom. Rode the big bus home by yourself.

We moved, and you made new friends. Claimed a seat front and center at church, playing air guitar and lifting your hands in worship. You revel in communion, lifting your cup of juice to the cross (no cracker, thank you). You were baptized in a cold lake. At the name of Jesus you pump your fist and say “my guy!” You sign “cross” and “pray” for every little owie.

You changed our understanding of worship, of prayer. Of faith. Yes, and of the goodness of God who loves the weak, the wounded and the marginalized.

You frustrate us, with your inability to understand more than life’s basics. I tie your shoes, brush your teeth, tuck you into bed with your dinosaur pajamas and listen to you beg for your birthday six months out of the year, and for Christmas the other six. Your constant needs weigh heavily, determine our hours and our days. You are almost 30 and not quite 3.

You stay the same, but you are constantly changing others. Your positive influence on people cannot be overstated. You, in your weakness, have had a greater impact on your world than many of us with advanced degrees and strong skill sets.

You don’t understand Down Syndrome, or chromosomes or why some people put cheese on their hamburger. But today, on this World Down Syndrome Day, I celebrate you in all your quirks and frustrations, your gifts and talents, your exuberant worship and unalloyed joy over a bottle of pop.

You have changed us for the better. And we are thankful.

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.

1 Corinthians 1:27

12 thoughts on “To Ben on World Down Syndrome Day

  1. A perfect and beautiful post. May I humbly change the “me” to “us” and the “I” to “we” in the last sentence?

    I so look forward to these emails!! Truly they are life changing and very memorable.

    Liked by 1 person

  2. Ben and your family have definitely changed us for the better over the years. We thank God for him and for you guys. Thanks for letting us all in to see your love and your patience and humility through you and Ben’s life over the years!

    Liked by 1 person

  3. Pingback: A La Carte (March 22) | BiblicalCounselor.com

  4. Pingback: A La Carte (March 22) - Top Affaires - Business et formations en ligne

  5. Pingback: A La Carte (March 22) - Refcast

  6. I remember explaining autism to my then 6 year old daughter when she asked if Ben would be driving soon after his 16th birthday. When I asked her if she had noticed differences about Ben from other kids, she answered no. To her, Ben was just being “Ben”, Today, she’s working with autistic children as a behavioral technician. I cannot help but to think that God has planted a seed of caring for special need kids through Ben in her heart that shaped her perspective. I am grateful for the time we had with Ben and all of you. Ben, you were fearfully and wonderfully made by our Creator!

    Liked by 2 people

  7. I remembered explaining autism to my then 6 years old daughter when she asked if Ben would be driving on his 16th birthday. Then I asked her if she had noticed anything differently about Ben from other kids, her answer was no. To her Ben was just being Ben himself. Today, she is working with autistic children as a behavioral technician. I cannot help but think that God had planted a seed in her heart for tender love towards special need children through Ben. I’m grateful for the time we had with your family. Ben, you were fearfully and wonderfully made!

    Liked by 1 person

Leave a Reply to The Dravenstatt's Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s