Behind the Scenes Commentary on The Ten Year Marathon

Last Thursday, I posted an updated video (embedded above) showing the progress Sarah Kate has made in her gross motor skills over the seven years since she underwent selective dorsal rhizotomy surgery at age three. I had intended to include a commentary of the video when I posted it, but as I was editing it and reviewing the finished product, I realized I had a lot more to say than just a few sentences. Hence this post. I’ll break it down by scene, because that makes the most sense to me.

April 2005

The first scene is eight months before her selective dorsal rhizotomy. When we showed up for therapy yesterday, her PT shared with us that after seeing the video she was a little surprised to see how Sarah Kate walked before the surgery – she was much more affected than she had realized.

You may have noticed that there is a local TV logo in the bottom corner; that footage was pulled from a story on our family centering on the problem of premature birth. At one time, we were the regional ambassador family for the March of Dimes WalkAmerica, but our family no longer supports the March of Dimes – their philosophy would benefit one of my children, but would harm the other, and I can’t support that.

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January 2006

The second scene is three weeks after the surgery. The walker was put away at the time of the surgery and she began working to use quad canes. Although you can’t hear her in the edited video, she said over and over again, “red cane, red foot; black cane, black foot” (she had hair clips on her shoes with colors corresponding to the handles on the canes). She was so proud of herself for using the canes! Just a few days before, she and the PT walking behind her had a battle of wills that was almost the death of me. Ultimately, the PT won and she’s been cooperative in every PT session in the seven years since.

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February 2006

The third scene is less than three weeks later, and she’s being pushed to take a few independent steps. Unlike the video with the canes, she isn’t excited or proud – she’s terrified. The unedited footage is heartbreaking and difficult to watch. The wrap around her torso was placed there to help her feel more secure, not as core support as it appears. You can see some of the anguish on her face at the end of the clip. I started to upload the raw footage, but…I think you get the idea.

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April 2006

Independent steps! Only four months post-SDR and she could walk short distances by herself. She struggled with “chicken wing” arms – you can tell at one point that she was coached to put her arms down. Did you notice, also, that she didn’t stop or stand still? She didn’t gain the ability to stand still or stop without holding onto something for support until the summer of 2008 – over two years after this video was shot.

Oh, and don’t you think that last part looks a LOT like Nathan?

August 2010

The next scene jumps ahead a few years and is the footage that I filmed for the first video. She is able to stop, stand still, and walk with her hands down. She has clearly improved, but at that time there were quite a few things she still couldn’t do: curbs, running, and jumping, to name a few. In case you noticed that it seems like her braces are missing, take a closer look: she’s wearing a different style, called an SMO.

Research tells us that motor patterns are mostly set by age seven, which is how old Sarah Kate was in 2010. When I put together that first video, I was pleased with how much progress she had made but I’ll also be honest and tell you that I didn’t think we’d see too many more gains. I was wrong.

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April 2012

There is no doubt that if you’d told me in August 2010 that less than two years later I’d be filming Sarah Kate playing softball – and not just playing, but making a hit – I’d have never believed it. But play she did, and she was *this* close to being able to run. The telltale “chicken wings” are evident in the video, as they always reappear when her brain must marshal all of its resources to attempt the difficult.

Today

At age ten, she’s still improving. She rides a bike now, can run and jump, and is able to climb a couple of steps without holding on to anything. You can see in the video that the arm swing comes more naturally now, but she still fights the “chicken wings,” particularly the right arm. Just by watching her right arm in the three segments of the final scene, you can see which activity – walking, running, or climbing steps – is the most difficult. Climbing the steps, by the way, is a brand-new skill that she just mastered the day that I filmed her.

So there you have it – my commentary on the video. Of course, I’ve lived with her and watched her make incremental improvements slowly over time. The compilation is no less impressive, but I’m certain that the lens with which I view it is different than what you see.

So now it’s your turn to tell me: what struck you, or what caught your eye, when you watched it?

Comments

  1. K's Mama says

    Looking back, hindsight being 20/20, what if anything would you have done differently for Sarah Kate, therapies/surgeries, etc, anything you wish you had or hadn’t done?

    • Andi says

      Hmmm…I’m not certain that I would do anything differently. Of course, there’s always the feeling that we haven’t done enough – haven’t forced her wear her knee immobilizers, haven’t stretched enough, and so on, but I don’t think there’s anything I would do differently if I had it to do over.

  2. Jennifer says

    Even when she was terrified, she looked determined!!! It may have started out determined NOT to do it, and now it is determination to DO it, but determination nonetheless.

    One other thing that struck me was her hand. Maybe you’ve mentioned it and I watched for it it, but her fingers wer stiff and that surprised me. I know now why, but it still caught me off guard.

    She also radiates a joy that I really can’t describe, but love watching. Thanks for sharing.

  3. says

    the video was amazing and inspiring! thank you so much for sharing. i adopted my daughter (who has CP) two years ago and she continues to surprise us with her progress. it encourages me to read about your determined little fighter and to think that maybe someday my daughter will play a sport with her typical peers. the stairs were incredibly impressive! she is a brave girl.

  4. says

    I guess the part that stood out the most the first time I watched it (the first time you posted it) was that she was playing on a non special needs team. That’s awesome! She needs that confidence that she can compete and play with kids her age. We have a friend whose son has autism and there are some kids with cp on it. So I guess the first time I read she was on a softball team I assumed that’s where she was playing. I love the look on the girls ‘ faces in the picture you posted that are cheering her on. How beautiful it is.

    • Andi says

      Yes, people are surprised to learn that. The only accommodation she has received is being able to play down one age group. When the rest of the girls in her grade that she played with last spring moved up to 10U this year, she stayed down in 8U. In fact, the first year she played I heard that some folks wanted their 6U girls to play up in 8U (more teams, better developed players and coaches, etc.) but they wanted the 6U girls to be able to bat off the tee the way they would do in 6U. Sarah Kate’s coach refused to agree, citing the fact that she hadn’t asked for any special treatment. Her team ended the season in first place. :)

      The photo of her teammates cheering was taken at closing ceremonies last May (you can find a post on it in the archives). The league gave only one award to an individual player – the President’s Award – and it went to her. That photo was when her name was announced. Not only did the girls cheer for her, but after she had accepted her award and was heading back toward her team, several of them ran out to her and escorted her back. It was one of the moments that you relive over and over in your mind when you’re a mom.