Movin' On...

Stones

So, Richie and I had a hot date over the weekend. He was fabulously self-sacrificing and bought us two tickets to the Steve Bell concert. Steve Bell AND the Winnipeg Symphony Orchestra. Since Richard only listens to AC/DC and Michael Jackson, this was major out-of-comfort-zone steppage for my Yankee Doodle.

It was an amazing concert. Truly. One of the best I’ve ever been to. Even Richie was surprised at how much he enjoyed little ole Christian folk-singer-ish Stevie.

Some of the songs brought me back. I’ve been listening to Steve Bell for a long time. For those who are unfamiliar with his music, he’s a local artist whose voice is pure and lyrics moving. He loves Jesus, and, in my early 20s, I often played a Steve Bell CD when I felt like returning my heart to the cross (because there was a lot of returning to do…sigh).

I got a Steve Bell CD for Christmas in 2000, our first married holiday. I fell in love with the song, “Here by the Water” and the lyrics pierced my lonely heart. Looking back, I realize that I was stupid and naïve, but my pain was real at the time. I was homesick. We had just moved to Dallas, strangers in a city of six million. I was looking for the “perfect” job. I was sad. And, when I heard this song, I thought about the altar I’d build with my homesick stones.

• Here by the Water
Music and Lyric by Jim Croegaert
© 1986 Rough Stones Music

Soft field of clover
Moon shining over the valley
Joining the song of the river
To the great giver of the great good


As it enfolds me
Somehow it holds me together
I realize I’ve been singing
Still it comes ringing
Clearer than clear


And here by the water
I’ll build an altar to praise Him
Out of the stones that I’ve found here
I’ll set them down here
Rough as they are
Knowing You can make them holy
Knowing You can make them holy
Knowing You can make them holy


I think how a yearning
Has kept on returning to move me
Down roads I’d never have chosen
Half the time frozen
Too numb to feel


I know it was stormy
I hope it was for me learning
Blood on the road wasn’t mine though
Someone that I know
Has walked here before

If that 24-year-old girl had known about the stones yet to come, I think she would have slipped into a joy-gripping, never-ending depression.

Five years later, I found that dusty Steve Bell CD and took it with me to the NICU one night. As I rocked Ellie, careful to keep all her tubes in place, this song came onto my playlist. And I was moved. Again.

Here by the water (Medical Center of Lewisville)
I’ll build an altar to praise Him
Out of the stones that I’ve found here
I’ll set them down here
Rough as they are

Oh, my stones were rough, alright: Prematurity, brain bleeds, post-partum pre-eclampsia, medical bills, doubt, questioning, feeling like a failure, not loving my baby, complete fatigue, jealousy.

Knowing You can make them holy

In the deep caves of my heart, I knew. But, I wasn’t sure how. How could God make my stones holy? How could this situation turn out for His glory? How could I go on and sing?

I heard this song again on Saturday.

And I sang.

As it unfolds me, somehow it holds me together
And I realize I’ve been singing

I’ve been singing as I’ve watched that little tube-fed, premature baby grow up to be a lovely little girl. I’ve been singing as I’ve felt God soften and mold my heart to love Ellie just as she is, perfect and precious. I’ve been singing as I’ve asked Him to hold my hand as we walk this bumpy path together.

I think how a yearning
Has kept on returning to move me
Down roads I'd never have chosen

Oh, believe me, this is not the road I would have chosen. Not by a long shot. But, I’m here. I’m doing it. I’m living it. And still singing. The only plausible explanation for my song is that I’m not walking this (un)chosen road alone.

Blood on the road wasn’t mine though
Someone that I know
Has walked here before

Sometimes, as I travel down this road, I feel like the stones are sharp glass and each time my heart steps forward, it is ripped to shreds. The trail is stained with my hurt and tears.

But, the blood? The blood is not mine. Shed FOR me, yes. Mine? No. And the tears? They’re not all mine either. So…

Here by the Water
I’ll build an altar to praise Him
Out of the stones that I’ve found here
I’ll set them down here, rough as they are
KNOWING YOU CAN MAKE THEM HOLY

These sharp stones--self-pity, worry, fear for the future, SDR surgeries, therapy payments, walkers, wheelchairs—they’re all holy. Because I lay them at His feet and build an altar out of them. All of them. So that He can use them and make them holy.

Use ME and make ME holy.

Have I mentioned that I love this song?

Funding Schmunding

A new series of books came into the library the other day.  “Diseases and Disorders” is the umbrella title.  One of the twelve books was called, “Cerebral Palsy”.  Of course, my interest was piqued.

I paged through the book and realized how well versed I’ve become on all matters CP-related.  For a very non-medical person, I know a lot about brain hemispheres, spasticity, and muscle relaxants.  About half-way through the book, I came across this page:

And my heart started turning red with rage.

I realize, of course, that this is a very sensitive subject.  I know that many of my readers are parenting autistic children and deal with the similar struggles.  I understand that autism is as real as cerebral palsy, and the diagnosis is also life-changing and dream-revising.

But, why are autistic kids offered so much more than those with CP? 

Richie and I are so blessed to have jobs, to have family support, to have resources that allow us to pay for Ellie’s therapy.  But, today, when I wrote out a $1300 check to the Movement Centre (which will cover us only till June), it stung. 

I have heard many of my friends complain about the cost of hockey or dance, swimming  or T-ball.  “Paying for all these extra-curricular activities is gonna send us to the food bank!” they exclaim, only half-joking.

The joke doesn’t sit well with me.  Obviously.  We spend more in one MONTH than the average parent dishes out for an entire year of hockey.  And the money we’re spending on therapy?  It’s not for an “extra curricular activity”.  It goes towards the mere hope that maybe Ellie will be able to walk functionally with canes one day.  There is nothing “extra curricular” about it.

But, again, I know that we are blessed beyond measure to even have the ability to pay for this therapy.  What about the people who DON’T have it?  What happens to their child with cerebral palsy?

Well, if they live in Manitoba, they get once-a-week “free” home therapy.  If they live in Florida, they get nothing. 

What would happen if that same child had autism?  Depending on where they live, their child would have access to fully-covered intensive Behavioral Intervention Therapy.

It makes me mad.  And sad.

We have seen lives change because of Conductive Education.  CP kids who were unable to stand up on their own are able to take steps in a walker after a 4-week camp session at the Movement Centre.  It WORKS, it’s EFFECTIVE, it’s LIFE-CHANGING.  And it should be covered the same as therapy for autism.

So, who do I vote for in order to see this change?  Who’s going to stand up for kids with cerebral palsy? 

Richard, maybe it’s time to start thinking about running for both Congress AND Parliament.  I’d make an awesome trophy wife.