“You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous — how well I know it.” (Psalm 139:13-14, NIV)
“What is she thinking?”
That’s the question I ask myself hundreds of times each day.
She is our twelve-year-old daughter, who happens to have Down syndrome.
She is significantly delayed cognitively and physically, more than even most children with Down syndrome.
She is also a spit-fire strawberry blond who loves to run, laugh, listen to music, and give us a tween “stink eye” when she doesn’t get her way.
She is a gift from God who checks our “pride monsters” at the door.
She reminds us to slow our pace to God’s “unforced rhythms of grace” (Matthew 11:28-30, MSG).
She is so many things, just as we all are.
We are each a unique life bundle. Our lives are canvases of characteristics painted by our actions, choices, and thoughts.
And this is where my throat lumps. What are our daughter’s thoughts? Specifically, her deepest thoughts? Selfishly, I want to hear them because that’s how I connect on a soul level with others. I want to touch her soul with my words, but it’s like a wisp in the wind. I can see it – almost grab it sometimes when she peers into my eyes – but then it dances away on gusts beyond my reach…
Our daughter with Down syndrome does speak a few words, but oftentimes they’re out of context. That said, her immediate physical needs motivate her to speak in context… like “want to eat,” “cookie,” or “please.” Her spoken word bank tops out around 10 to 20.
She has never used words to express how she feels, however. For feelings, she employs physical-behavioral means, which come in the form of a broad smile after that cookie, a hoe-down-worthy stomping after being told “no,” or her go-to for “mad:” a sit-down-and-won’t-budge.
Since she isn’t able to express her feelings with words, I feel distance between us. I’m a verbal processor. Words, language, and conversation are like oxygen to me. Our other two children adeptly express themselves with words – sometimes too well! Why can’t I have that with our twelve-year-old daughter?
This is when I plaintively pray for a device to plug into her brain that reports her thoughts!
Where is technology when I truly need it? I want to know whether she knows God. I want to know whether she loves me. I want to know whether she is happy living in our home.
God then tenderly taps me on the shoulder, interrupting my reverie. He reminds me of His truth about our girl: “Blessed are the meek, for they will inherit the earth” (Matthew 5:5).
And I melt. Our girl, in all her meekness, is set for a beautiful inheritance.
Perhaps she has already moved to a higher plane and has a direct line to the deepest One of all? Maybe her unique-to-Down-syndrome Brushfield spots – tiny stars in her deep blue irises – were placed there by God to remind me of the mysteries and the majesties of His vast universe? Maybe He is just reminding me that my meager human understanding will always be just that? (Proverbs 3:5)
Maybe I’m the one with the shallow connection to God?
Maybe I’m not meant to connect with her the way I want to now – at least not on this earth? Maybe I’m to wait until we reunite in eternity? If so, I can’t wait to plug into her beautiful soul on that glorious day! I long to collect all her hopes, dreams, and deepest desires…
And this is when gratitude creeps in.
God knows me so well. He knows how to draw me close. With a sheepish side-grin and a wink upward, I clasp my hands together and close my eyes. I begin to pray, thanking Him for the gift that He has given us in our girl. The lessons that she teaches us. That God loves us enough to entrust us with her care. But mostly that our girl keeps me plugged into God, the ultimate source of soul connection and renewal!
1. With whom do you struggle to communicate? (Maybe they don’t have a cognitive or physical disability, but they have personality traits or habits that rub you the wrong way or prevent a healthy relationship.)
2. Write a prayer asking God to help sort out your struggle in His will.
“Why Your Brand of Unique is Perfect” by Amy Carroll
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