For many reasons, the difficulty level of this dance seems to increase when you parent a child with special needs. It isn’t technically harder, of course, but it is different. In our case, we’re constantly second guessing ourselves when it comes to parenting Claire. Most of you know her story. She has mild cerebral palsy and she’s so good at adapting that too often we forget she isn’t a typical middle child.

Other times, it is only too clear with Claire that we’re not dealing with a child facing the usual problems and obstacles. This is especially true whenever she has an evaluation or milestone, and it was one of those weeks.

First, I stood at the rehab clinic and talked with her physical therapist while we watched Claire walk up and down the hallway. She has hemiplegic CP which means most of her weakness/tightness is on one side, her left. Since our bodies are meant to work symmetrically, this causes many physical problems for Claire. We talked stretching and muscle-building and Botox and exercise. It’s always tempting in those conversations to feel like I haven’t been doing enough or to despair that we’ll never “fix” the problems.

“What was her diagnosis? She had a stroke as a baby?”

“No, she had brain bleeds as a preemie. Grade 3 on one side and Grade 4 [the worst possible] on the other.”

Our therapist threw her hands up in the air, “Oh, my gosh! What are we stressing out about?! What she’s doing is amazing.”

And it’s true. Years ago at a visit to one of her specialists, we overheard the parents in the chairs nearby working together to fill our the paperwork that asks about the patient’s history. It turned out their daughter was just a bit younger than Claire, born at the same gestation [25 weeks] and with many of the same complications. The difference was, our daughter was toddling back and forth to the magazine rack bringing us things to read and their daughter was staring off into space strapped into an electric wheelchair equipped with a ventilator that kept the little girl breathing.

That could have been our reality. Instead, we’re “tweaking” her walking/running gaits and reminding her to use her left hand to help with daily tasks even though it would rather just hang tight at her side. We’re trying to figure out how to help her catch and throw a softball and how to spin in time with her classmates in the school musical. Remembering where we could be helps me relax about where we are.

Then it was also IEP week, which meant I met with the special education coordinator to discuss Claire’s recent evaluations and how they will impact her educational plan. I’ve been bothered by her IQ score, frustrated that it didn’t match with what I saw in her mind and in her academic achievements, so I had requested that she be retested. I just knew the new score was going to prove that I was right.

I was wrong. The new score was actually a little lower than the first one. I fought my disappointment as we continued working through the results. Some of it is so heartbreaking, like the fact that my nine year-old tests with the physical abilities of a four year-old. That explains a lot of her frustration. And imagine the body of a four year-old doing the school work of a third grader.

But some of it was encouraging. There is still no sign of a learning disability. This is determined by matching her abilities – what she is capable of doing – against her performance – what she is actually doing. In a child with a learning disability it is determined that their academic performance does not match up with their abilities. In these cases teachers try to determine what kinds of things are standing in the way and help the child to overcome them (for example, reading test questions and allowing the student to speak his or her answer instead of writing it down). Claire has never tested with learning disability because it has been determined that even though her academic performance has been below average, she is working at the top of her abilities.

When I first learned that, it was not reassuring. I didn’t want failure to be the top of her abilities. But this time her testing showed some different results. In every academic area except for one (math), Claire performed as “average.” Which means that the only area where she is working at her ability level (which is below average for her age group) is in math. In every other area she is working ABOVE her ability level. And this test was administered by an external specialist using a test not related to Claire’s own schoolwork. So it isn’t that she is just getting special treatment at school or anything. She is literally performing beyond what she is technically capable of.

So what is that? The opposite of a learning disability?

I don’t know, but I do know it is a great way of describing Claire. It also reminds me of why the parenting dance with her is so complicated. Just when I think she isn’t able to handle the routines, she does a flying leap across the floor in perfect pace with the other dancers. Yet then when I push her to finish a math review worksheet on her own, I find her still working an hour later and remember that subtraction – for some crazy reason – is harder for her to process than multiplication. The steps are out of sequence, we’re learning as we go, and the music doesn’t always match the costume.

But we’re dancing. And we’re having fun learning. And no one else really knows what any of it is supposed to look like anyway. I think I’ll remember that and just call it art. I might not be able to explain it or replicate it or teach anyone else how to do it, but good art doesn’t have to do any of that. Art just is, and we enjoy it and learn from it and let it make us better people in ways we don’t even understand. Just like parenting.

This particular excerpt closes with this explanation: “I put into words what Charlotte Brontë put into actions.”

Here are her words (after she makes the bold and probably not-quite-true point that men who take up writing are easily replaced in their day jobs by another man just as qualified):

But no other can take up the quiet, regular duties of the daughter, the wife, or the mother, as well as she whom God has appointed to fill that particular place: a woman’s principal work in life is hardly left to her own choice; nor can she drop the domestic charges devolving on her as an individual for the exercise of the most splendid talents that were ever bestowed. And yet she must not shrink from the extra responsibility implied by the very fact of her possessing such talents. She must not hide her gift in a napkin; it was meant for the use and service of others. In an humble and faithful spirit must she labour to do what is not impossible, or God would not have set her to do it.

I know it isn’t modern-age politically correct, but most women I know (even the modern ones) can identify with this description and its encouragement. There is a unique pull, especially on mothers and wives, between our irreplaceable role in our homes and families and our belief that we are capable of offering other things to the world as well.

It’s a tension we all feel. Most of us, when we’re honest, never feel like we get it perfectly right, but that’s the nature of tension. That’s how it feels to love the many roles you play in life and still wonder if, since you are trying to play all of them at once, you play any of them well enough to win an Oscar.

I think you do. And you will. You must “labour to do what is not impossible” – emphasis ours!

This is what I overheard.

Macy to the horse: (whispering) “I’m go-in’ be you best friend!”

Me to Macy: “What did you say?”

Macy to Me: (laughing) “I can’t tell you!”

Because no one knows their own end.

I’d like it to be something like The Notebook. We’d be holding hands in our sleep and just drift away to Jesus together. I’ve recently read two different news stories about the real-life versions of that movie, two couples married for years who were able to escape the sorrow of living without one another because they met death within the same 24-hour period. That would be ideal, wouldn’t it? But that doesn’t happen for many. Most of us have to deal with something less than perfect.

No one knows their own end. Mostly.

One thing we do know. A Facebook friend alerted me to a new ABC series called Once Upon A Time. It is mesmerizing (but not for children even though the title might imply as much). The fight between good and evil, so clearly depicted in fairy tales, is the basis of the show along with a bit of The Matrix twist about living in one reality and forgetting the truth. Fascinating. My favorite line so far came from Snow White when she realized her newborn child had escaped the evil Queen’s curse and would someday return to rescue them all. Full of fire and hope even in the midst of her deepest sorrow, suffering, and loss, Snow White locked eyes with Evil and said, “You are going to lose.”

That much we know. No matter when death takes us now, it will not win in the end. It will lose.

So I cannot tell you how The End will look in words, but at the same wedding that gave us beautiful images of beginnings and middles, my brother-in-law caught this one that makes me think the end will be something like this: Us looking back over our lives – over all that we’ve known, loved, made, and cared for – and knowing it’s been good:

And by then we’ll also know it isn’t really The End. It’s the beginning. The beginning of Forever. And I don’t have a blog post for that yet.

Dan and I would catch each other between runs to the tux shop and walk-throughs at windy rehearsals and we’d smile, “So glad to be on this side of that!” So glad our beginning was beautiful, too, but mostly glad to be past it and to now be in the middle.

The middle of this bounty:

The middle of playing wedding . . . or orphanage, or mommy, or rock star, or all of them together:

The middle of dreaming into mirrored glass and smiling at the hazy images:

The middle of barn dances and laughter and twinkle lights:

This is basically the middle of life together, and it is sweet. Sure, there are moments we don’t necessarily want captured in digital ink, but I’m thankful for these shots that provide markers along the way. These photos, I know, will eventually fill a photo book that we’ll turn the pages of again and again.

“Look how small you were!”

“Oh, I loved that barn! And I loved our dresses!”

“Did I always smile like that?”

“What was I pouting about?!”

And none of us will remember because all we’ll see is how good it was in the middle.

Jesse recently read Though My Eyes, the Tim Tebow memoir, for his first fifth grade book report.

At one point in his editing, he told me he took out a sentence about Tebow playing baseball as a kid because it just “didn’t have the same idea” as the paragraph where he had put it that was about Tebow’s years playing Pop Warner football. Another time he came dashing up the stairs and lifted the lid of the computer, “I forgot about the John 3:16 story – I have to put that part in!”

I’ve never loved Tim Tebow more. His book has encouraged Jesse’s faith and given him an understanding of the perseverance and hard work required to see dreams come true. It’s been a great book for him to read as his first grown-up selection.

A week or so ago over lunch, my Uncle Rees asked Jesse a great question, “What was your favorite story from the book?” This forced Jess to be specific about what he had read. His answer surprised me.

The stories he had been mentioning to me were exciting. Tebow’s mother had been encouraged to abort him because it appeared that he would have severe birth defects. She wouldn’t do it. (“I think an abortion is when someone kills the baby before it’s born. Why would a mom do that?”) As a high schooler, Tebow, now an NFL quarterback, played defense for two of his four years. During a bowl game in his college career, Tebow painted “John 3:16″ on his eye black. 92 million people googled it afterwards.

But when faced with the question, “What was your favorite story?”, Jesse answered his Uncle Rees like this:

One time Tebow had a bad game and his mom came to him after the game and cheered him up. She always gave him pep talks and encouraged him. His dad taught him how to play the games and how to be tough, but his mom always made him feel better.

That was his favorite story? Be still my beating mother’s heart!

And yet it makes me wonder: Is this the role I take on in his sporting career? I know a lot about football. I love sports in general. I can be that mom shouting out plays and technical advice. But maybe I should be something else. Maybe I should just cheer him on. Just smile and clap and remind him that there is more to life than sports. Maybe with his heart-felt answer, he’s asking me to be something different than what he sees me becoming. (I can get a little intense.)

If you’ve been to a kids’ sporting event lately, you know what I’m talking about.

I’m thankful someone else asked him what his favorite story was from the book and that I was there to hear his answer. It has me re-evaluating my role in his life. In our culture, women are expected to do it all, but maybe that’s not really what our kids want.

Now I’m off to draft my next pep talk. I want to make sure all the sentences fit.

Daniel John (my rock star husband) is playing a mini-concert on Thursday night August 18th. He’s trying out a new system called Stage It that will broadcast from our computer to yours. Watch live from anywhere! He’s even taking requests. Tickets are $1. Tell your friends!