I’m not perfect; I can’t walk

I’ve been thinking a lot lately about the word “perfect.”

I never realized how often I use it – especially at work:IMG_2383

  • “How does this Web page look?”
    “Perfect, nice job!”
  • “I should be able to complete that by Monday.”
    “Perfect, thanks!”

What got me thinking about it was our recent summer vacation to Florida. The kids’ first Disney trip.

We were hoping for perfection. And we got it — almost.

We learned some things about Santi and Adri this vacation. For example, they get excited about the little things:

  • Riding the airport train to different concourses and the rental car place.
    (Gaby and I decided that for our next vacation, we’ll just go to the airport and ride the train around; a lot cheaper than going to Disney.)
  • Getting ice at the hotel.
  • Hitting the elevator buttons or using the key card to open the hotel room.IMG_2458
  • Checking out the hundreds of brochures at each hotel that promote zoos, aquariums, big game sanctuaries, alligator farms – you name it.

It’s that last little thing – the brochures – that got my mind going about “perfect”.

Adri grabbed four or five brochures from the hotel and was looking through them while we were driving to the beach.

There was a picture in one of them of some baby ostriches, or some other bird species.

The baby birds weren’t as cute as other baby animals, and Adri made a comment about how funny they looked.

To which Gaby responded, “God made every creature perfect.”

Adri’s response: “I’m not perfect. I can’t walk.

It was an innocent response. Not angry or sad or bitter.

Simply Adri’s interpretation of what “perfect” means.IMG_2306

There have been a handful of times when Adri’s made a comment about her medical condition:

  • “Will I walk when I turn 5?”
  • “I can’t do that. I can’t walk.”

Comments that pierce the heart. And leave me numb.

As I try to think of the best way to respond.

Gaby fought back a few tears: “Just because you can’t walk, doesn’t mean you’re not perfect.”

I was thinking the same thought, but the words didn’t come out.

Adri didn’t respond. img_2113.jpg

She was ready to move on to another brochure.

But the thought continues for me, every time I hear or use the word “perfect.”

What is perfection?

The dictionary defines perfect as “being entirely without fault or defect.”

So, by that definition, Adri is correct. She is not perfect.

But not because she can’t walk. Or because she has SMA.

It’s because she’s human.IMG_1983

Nobody is perfect. But our imperfections make us unique — and, in a way, perfect.

So, how do we get Adri’s head around the fact that perfection isn’t a physical attribute?

Having blue eyes, or being tall or thin.

Or that having a degenerative, neuromuscular condition does not make her imperfect?

The answer came for me last week in church.

Father Israel told us that to strive to be perfect – the perfection that is Christ – one must strive to be loving, kind, compassionate, and nonjudgmental.

Adri is like any other six-year-old. Sometimes she exhibits these attributes, sometimes she doesn’t.IMG_2285

But one thing she almost always does is bring out these attributes in others. Her condition makes others act Christ-like.

We were at our friends’ annual crawfish boil the other day. Adri moved around easily in her wheelchair, and played with the other kids. As we were leaving, a gentleman I’ve seen at previous get-togethers said, “your daughter just lights up the place. She makes everyone smile.

A few months ago, a random stranger at church passed by us after communion. “God bless your family,” he said. “You are an inspiration,” he told Adri.

As I thought more and more about it, it was easy to see the acts of love, kindness, and compassion for Adri.

On our Disney vacation, for example:

  • The folks at Clearwater Marine Aquarium who gave Adri her wish to see and play with her favorite dolphins, Winter and Hope (see the video below).
  • The Disney employee who gave us a voucher for free ice cream as we were  standing in line waiting for the Aladdin ride.img_1952.jpg
  • Another Disney employee who covertly directed us through a backdoor, allowing us to bypass the line to see Buzz and Woody.
  • A random lady at Magic Kingdom who bought Adri a Mickey balloon. And not a cheapy balloon. A nice big one that must have cost $15.
  • The TSA agent who kindly walked us through airport security. Yes, that’s right…….KINDLY.

And then there are the acts of love, kindness, and compassion taking place through our normal course of living:

  • Our neighbors who, within days of us moving in, built a ramp at their house so Adri can ride her chair in and play with their kids.
  • The elderly gentleman who uses the same therapy pool Adri does. He bought her a Moana DVD and gave her $20 when she lost her first tooth.
  • Gaby’s Zumba friend who created Adri’s Halloween costume.IMG_2428
  • The school mom who scheduled her daughter’s birthday at the local Tae Kwan Do because it was accessible for Adri.
  • Our friends who always make sure to bring PEZ dispensers and refills whenever they come over.
  • Friends and family who support us every summer at the annual Cure SMA Colorado Walk-n-Roll to raise funds for SMA research.

I don’t know when Adri will understand that she is not imperfect because she has SMA. Or because she can’t walk yet.

And understand that perfection, instead, comes from our words and actions.IMG_1859

A priest from our church once told Gaby that God doesn’t make mistakes.

We each have gifts.

And one of Adri’s has been to inspire others to do good — to be good.

To smile and to reach the potential we each have…..

….to be loving, kind, and compassionate.

And that gift, in itself, is perfection.

 

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6 thoughts on “I’m not perfect; I can’t walk

  1. So beautiful Carlos….and so much truth. Adri is perfect as she is. I love reading your heartfelt insightful posts….Keep them coming 💕

  2. “Perfect” post! Beautiful….thank you for sharing your thoughts. Thought provoking and so true! Your family is so beautiful and real. Thank you for sharing the beautiful pictures highlighting your Disney vacation. Adri is a miracle😘

  3. “Perfect” Thanks for sharing. Loved the pictures of your vacation. Seeing the kids and how much they have grown since your last past is wonderful to see. You have a beautiful family.

  4. Carlos, you are an amazing father with the gift of writing eloquently. Your daughter is truly an inspirational child. I see her inspire Gianna to be a better person. We love all your family so much and feel incredibly blessed to call you our neighbors.

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