Daily Updates Picture Video

The Road Less Traveled

Beckett's 6th Birthday – December 28, 2010

Tonight, Beckett gave us a grand finale in his room at Barrow Neurological Institute. He tied a shoe. Granted, it wasn’t a shoe on his foot – it was sitting on his bed – but the fact that he could summon up the dexterity required to loop, swoop and pull is no small development.

No, like most things Beckett – heck, like most things in Beckett’s wild 11 day ride – it was dramatic and miraculous and way ahead of schedule.

I feel guilty on some level hosting a blog on Guillain Barre, where the scope of success is so sweeping, so fast. Beckett continues to amaze his doctors and nurses and therapists.

The “no negativity allowed,” “no ‘why me,'” driven-to-succeed attitude of Beckett is so infectious, it has left doctors and nurses and therapists shaking their heads in amazement.

When the paralysis had reached into Beckett’s neck, you may recall, the doctors were subtly warning us of mind boggling hospital stays – 28 days in the first facility, possibly months in rehab. Our insurance company analyzed the reports and initially pegged his target in rehab at 5 days. Five days! The standard course of rehab for GBS can be months.

That doesn’t mean his stay will be 5 days; the rehab people will work with the insurance company to constantly assess where he’s at. And, if needed, I’ve no doubt he’ll be approved for longer treatment. But both Heidi and I get the sense that Beckett is on the fast track. There’s a chance he could be home by the end of the week; meaning he could run the course of his condition – from GBS onset to enough recovery to come home in 14-16 days.

That’s almost unheard of in most of the literature I’ve read; although, certainly, the doctors have told us of a case or two they’ve seen like that. One of our closest friends, Dave, who also suffered GBS, had a similar experience. He went into a coma for 5 days; and after his recovery, and a week or two of rehab, walked out the door of the hospital facility fairly similar to how he walked in.

Beckett even rode a tricycle today, across half a city block. His feet were strong in the beginning, holding in the proper position. Later, Heidi said, his feet flopped, showing the inherent weakness, and short path to exhaustion, that lingers in his body.  Still, it was another incredible step.

***

Elsewhere, Beckett continues to look strong. He is standing on his own for periods of time.

His walking is still labored. He sort of flops one leg up, flops it down, then flops the other leg up. He gets stronger with each day, no doubt.

But there’s no way that what he does can be considered normal walking.

I remain convinced that this will come back, too. Each day, he seems stronger; more determined.

Today, for the first time, he asked, “Can I go home now?”

***

The house is empty tonight, yet again. In fact, there’s nobody here. Just me.

It’s funny how this space, which can seem so cramped with four living, breathing humans, can seem so vacant with just one. Appliances, couches, utensils go unused. The lights shine in only one room.

I’m ready again for the screams of children; for the background noise of crappy television; for the mess of Transformers and crayons and scattered homework.

I’m ready to have my life back. And yet, somehow, that seems selfish. A gift too great to ask for so soon.

I wish I could offer some deeper introspection right now.

But I’m fried; the days are having their way with me.

Productivity lags.

But hope for a return to a family of four, back in our home, some time soon? There’s lots of that right now.

– Ed, Heidi, Beckett and Brody

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3 comments on “The Road Less Traveled

  1. Carol Anderson

    It goes to show that Prayer is a good thing! Ed your daily posts have been wonderful keeping everyone updated on Beckett and the family’s progress. I think you should some day turn these posts into a book for other parents and children going through horiffic medical ordeals.

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