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Beyond Measure
Posted Apr 11, 2015 by Jacquie Robison
Milestones. Benchmarks. Firsts.

I was armed with all the new parent knowledge I could get my hands on as I prepared myself for Sofia’s birth. But, the best laid plans and all that. Turns out there’s really not much of a playbook for the arrival of a 28-week premature daughter.

Still, my husband Jeremiah and I watched and tracked as she slept through the night for the first time. Smiled for the first time (when it wasn’t gas…well, we’re pretty sure it wasn’t). Held her head up on her own. Rolled over.

So, when we got her diagnosis of Cerebral Palsy at almost a year and a half of birth, lots of things shifted. Just as we thought we were working our way on to the ‘standard’ ruler that would measure future gains, it was snapped in two. And, realizing that we weren’t going to have a common unit of measure to gauge when we could expect her to move forward and try the next thing was both scary and liberating.

We recognized that she would be moving at her own pace, and that one of our jobs was to keep a step ahead of her. To keep encouraging her to develop her muscles and make the connections her body and brain were working to figure out. It wasn’t always easy, and it still isn’t. There is certainly frustration at not having a roadmap on this journey, because you don’t know when you should be pushing for her to try something new.
I remember watching her step along one day and climb slowly up on to the couch. It was the first time I had seen her do that, and I knew that bending her knee to get her leg that high was a big feat. It struck me that she may be able to get herself up into her own chair  (one of those ‘Z’ style chairs) at the dinner table, rather than us lifting her and getting her in her seat. So, that evening as I was getting food on the table, I casually said, “Sofia, momma has her hands full. Could you try to get up in your chair on your own?” Sure enough, she got over to the chair and after a few false starts, climbed right up in to it.

Being mindful of presenting her with these opportunities takes some thought, but it is part of the shift we’ve been making ever since we learned she is working with CP. And, she keeps raising the bar, which is a ruler beyond measure.

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