Tread: An Ode to Svante the Svede

This week I turned in my 8-year-old wheelchair, Svante, and upgraded to a sweet little hot-rod of a chair... which I will write more about on another day. But for now, I'm feeling a bit nostalgic. So much has happened, so much has changed over the past eight years, and Svante has been with me through it all. So here is an ode that I wrote for him today. 

Tread: An Ode to Svante the Svede

By Connie Chandler

We’ve been through a lot in eight years - 

Mud, Gravel, Snow, Sand

Grass, Carpet, Wet Cement

And even shallow pools of water.

We’ve made designs, made a mess, and made our mark.

We weren’t afraid to plunge in, plow ahead, and push forward.

Every time we were on the edge of something new, I felt you whisper, “Go!”

Everywhere we went, our tread told a story.

Sometimes we needed a little help – 

We slipped out of control,

We spun until we were stuck,

We stumbled and stopped at stairs, curbs, and potholes.

But sometimes we were smooth sailing -

Hiking mountain trails, zipping along greenways, 

Crossing bridges, exploring paths with hidden endings, 

Further up and further in, faster and vaster than I thought life could be.

And in those moments, I didn’t feel like I was sitting down.

I didn’t feel weak or limited or helpless.

I felt powerful and adventurous and truly me…

I felt free.

An Adventure that Comes with a Breath-Taking View

Today I am 37 years old! Every birthday I celebrate feels like a miracle and a victory, and is weighty proof of the Lord's mercy and faithfulness to me. I don't think he would allow me to see another year, another day, another hour or even another breath if he didn't have purpose in it - for me to learn and grow and see him more, and for me to get to play a role (no matter how big or small) in his kingdom work. 

I relate to the world and reflect on my experiences quite often through stories and songs - I make a playlist on Spotify each year to catalog my memories of what happened and how I felt, sort of a musical scrapbook or journal. There are so many songs - everything from Disney tunes to Switchfoot, to Drew Holcomb, to Kermit the Frog! But one song has been sticking around in the soundtrack of my life for the past couple years that I want to highlight today... 

From the first time I heard it in the movie, The Greatest Showman, the words to "Tightrope" jumped right out of the context of the movie and echoed the prayer of my heart to the Lord. You can hear the song and read the lyrics here: https://www.youtube.com/watch?v=QmGJTtXE2Mo 

In the Christian community, we talk about our relationship with God like it's a "walk." And since I can't walk physically, I typically don't use that lingo because I can't relate. But oddly enough, I profoundly relate to this song's imagery of tightrope walking, when it comes to my faith journey! Over the past several years, I've found that life with God can be flat-out terrifying. 

I mean, it doesn't have to be... it can be pretty basic and calm, paved and level and (dare I say it?) boring - but only if that is all we want it to be. I believe God actually allows us to choose what that relationship looks like, to an extent. And if all we want is for him to bless our food, keep us safe, and get us through another day of our routine, then so be it... I believe this is true, because there was a time in my life when I begged him to back off and let me do things my own way, and He did. And I enjoyed it for about two minutes. I didn't feel free or in control at all - I felt weak, small and insignificant and so lonely without his hand in mine. 

He wants so much more for us - He wants to be so much more for us! And when I realized that, and said yes to him in a whole new way, my life was forever changed. 

So I said yes - yes to exploring new heights and depths of my faith, yes to discovering wild and amazing things about God and his heart, yes to true love and high adventure in whatever way he chose to give it. I wanted to experience a faith life that was on the excitement level of Indiana Jones! 

Except... have you seen what Indiana Jones went through?? Snakes, spiders, poison darts, cave-ins, exploding airplanes, and did I mention the snakes?? To have great adventure, I must accept the very real possibility of great risks... I may get hurt, I may fall, I may lose everything... I may not make it out alive. And I have to be ok with that, convinced that God's love is better than life, and that knowing Christ means becoming like him in his death. Giving him free range of the journey and committing to follow him into the Great Unknown means I literally have no idea where he'll take me, but it's probably not where I ever thought I'd go, and will very likely take me through places and seasons that I never wanted to see. 

But to experience adventure - the surpassing greatness of knowing Jesus as my Lord - requires courage to say yes. Not just an initial "yes" to receive forgiveness an salvation, but a daily yes - very often a "yes" for every new step I take. Because when He goes on an adventure, he takes my hand and invites me off the well-paved, fully-accessible path. He asks if I trust him with the road less traveled. And if I say yes to that, then he asks if I trust him in the dark where I cannot see. If I say yes to that, then he asks if I trust him on more perilous terrain, slippery rocks, sheer cliff faces, stormy seas, or a tightrope stretch out across the Grand Canyon. And every time I choose to trust him, he antis-up the risk, but also the pay-off - a breath-taking view of his grace and splendor that paralyzes me with wonder and awe and gives me the desire and courage to say yes to Him again. 

Just like every other year of my life, I have no idea what God has planned for the year ahead. I hope this year has more well-lit corridors and fewer snakes. I hope I experience more deep-breath victories on mountain tops and fewer moments of vertigo in looking down at the abyss below me. But whatever happens, I hope God will keep leading me by the hand and that I keep saying yes... Whatever happens, I want to continue this adventure with Him.

The Not-So-Normal Life

I got my #9 Spinraza dose last Friday!

I think I've got the formula for successful blood-drawing finally figured out: 1) Drink A LOT of water beforehand, 2) Keep my hand VERY warm (wrapped in a heating pad!), 3) Stay SUPER calm.  It's worked for me the past three times - one-and-done stick, in-and-out in 5 minutes. So if anyone else out there has a lot of trouble in that realm, maybe you can try my formula and see if it works for you!

We're still working on finding the most efficient/least uncomfortable way to dose. I think we figured out the best position for me to be in this time, and we may have found the best size needle to use... though we'll do it all next time and see if it works again. Tenth time is the charm!


I've been thinking about prognoses and predictions lately, especially related to kids with disabilities. It's come up several times in the past week, because people say that now, because of Spinraza, kids have a chance at a "normal life," which kind of makes me sad. Let me explain...

Often a doctor or caseworker or someone "who knows things" says that a child with a diagnosis (like cerebral palsy, spina bifida, Downs syndrome, or SMA) or who has been through horrible, traumatic experiences will "never have a normal life." This news is broken to family very solemnly, usually with sad eyes or a shaking head, like it is a shame and a tragedy. But I want to respond to that by saying, "Amen, and praise God!" Who wants a normal life anyway? Seriously, that sounds so... boring. Why would anyone expect (or even hope) that a child who has faces extraordinary adversity, obstacles, challenges, suffering - pick a word, any word! - will at best move forward in an ordinary way?

These are the people who have the potential to make a dent in the universe!
They have incredible insight, creativity, and resiliency when problems arise. They have the unique super-ability to notice, relate to, and speak into the pain and suffering of others. And they are the ones who can inspire and encourage and challenge those people in the world who are unfortunate enough to be living "a normal life."

Some quick examples of amazing people who had a challenging childhood are Helen Keller, Nick Vujicic, and Jean Driscoll, Joseph (from Genesis), Malala Yousafzai, and Bruce Wayne... but I'm sure if you think about it for a minute you will think of more, whether from the history books, story books, or your personal life. Imagine what our world would be like without their leadership and influence!

So many people in our world have a backward perspective. They think "normalcy" is a dream to be achieved and suffering is a nightmare to be avoided at all costs. But I know that isn't the way God sees it; every life is valuable and precious to him, and he can take every weak and broken piece and transform them into powerful and beautiful things.

Whether a child ever speaks a word or takes a step, their lives can speak volumes and have a butterfly effect that touches hearts and shakes the world.
Don't despair for the children in your life who endure painful and difficult things; help them to be courageous, strong, and full of hope. Remember - and remind them often - that this is evidence that God has BIG plans for their lives and there is EXTRAORDINARY work he wants to do through them.

And thank God for every child you know who is not "normal."