Lexi went to sleep in her boring old bed with boring old sides and an institutional green mattress and woke up in a vat of balloons — all different colors, some different sizes, generating enough static electricity to power a small village. She smiled. She’s 10.
It was the kind of smile that you have when you’re truly happy — not the smile you produce for an audience. Lexi knows nothing about putting on a front. She just knows what’s real. For her, everything is authentic. Our daughter is without facade.
Birthday smiles and happies and laughs. Have you considered balloons lately? Lexi has, and she was genuinely moved. When we throw her a full-on birthday party in a few weeks, I imagine the scene will be electric with her happy again.
Iraneus said “The glory of God is a human being fully alive.” To me, Lexi is fully alive. Her cognitive abilities preclude her from advanced duplicity. She cannot say “I’m fine” if she’s not. You and I have learned to adapt through lying to ourselves and to others. She doesn’t carry this self-imposed burden. She enjoys what she enjoys (balloons) and hates what she hates (hairbrushes and cheese).
And that, my friend, is just one of the lessons God has taught us through Lexi. On this day 10 years ago, I could not — no, would not — have had the ability to even be open to the idea that good things would come from this. The total surprise of Down Syndrome (Trisomy 21) floored us. It took about a year for us to even recover to functionality.
I’m spending the week at Covenant Hills Camp fulfilling the double task of speaking to the senior teens in the morning and doing big church music stuff in the evening. Happy to serve, sad to miss her official birthdate. I felt led this morning to talk about Lexi with the teens, which is always heavy and takes longer and longer to talk about now that she’s older. But, for whatever reason, these things come to mind and out of mouth, and I have to trust that God is somehow in it, using our story to encourage and equip someone else, and to bring glory to Himself.
I talked about how God has *not* met our expectations. We expected to have a normal daughter. In an alternate life, Emily and Lexi have already gone to get their nails done and hair did while the boys and I shook our heads at the shenanigans of women. It didn’t work out that way. We are not in the skewed universe, though sometimes I wonder if we actually are. Was this “meant to be?”
No. Evil is not meant to be, but it exists. This is the risk of humans with free will. They are free to choose evil. Since that day, when Adam & Eve chose plan B, we have been beset by brokenness. Today, things like DNA get all screwed up. Food spoils. Hair falls out. Bones break. Thankfully, Jesus has come to slowly but faithfully redeem the world and bring about a new heavens and a new earth. Believe and be part of it.
God doesn’t need to meet our expectations. He has already surprised us by exceeding our need through giving us the grace required to raise our daughter. Broken things are fixed, yes, but this takes time. Through it all, we are hopefully becoming more like Jesus in every way.
If you see her, wish her a happy birthday and sing Row, Row, Row your boat. She will ask for this by making a circular motion with her fists. You will wonder what is happening. She will patiently wait for the song to start. Upon your completion, she will move to her next request. You are her DJ and her radio station. She is your audience. Row.
She will then hit herself on the head, which will make you wonder if there was a mosquito you didn’t see. Nope. That’s the cue for Head and Shoulders, Knees and Toes. Sing it. Like you mean it, or it doesn’t count. This will make her happy.
She will then twiddle her fingers together like Mr. Burns. She expects the song Itsy Bitsy Spider. Your accompanying hand motions will only convince her that you believe the words you are singing. A half-hearted song will win her not.
There’s a Y in the road here: she may go back to Row, Row… or maybe ask for Little Bunny Foo Foo, or may just reach for your salad while you’re distracted. Your salad is now part of her. She has commandeered it. We’re trying to break her of this habit, but, until then, let us get you a new salad. If you wouldn’t mind another song or two, that will only speed up the process.
Lexi is now in her 10th year of changing the world. She has changed ours immensely because Lexi is different. Different is good. I’ll take this excitement over boring khaki any day.