This is the stage of recovery where things are both going great and deeply difficult. (Because alliteration.) And the two are inextricably intertwined, so that even the difficulty becomes a sign of the progress.
Although we don’t have exact start and end dates yet, since that depends on when they can get Rebecca’s brain mapped in excruciating detail, we have a treatment plan that feels pretty solid. That in itself is a relief, as was learning that CHOP is in-network for my health insurance plan. That’s huge, considering what kind of treatments and care were required to save Rebecca’s life. Had all this been out of network, well, let’s just say that at a minimum I would have had to restart my retirement planning from scratch.
Rebecca has improved greatly over the past two days, and as of today was taking unassisted steps, holding a hand for balance, walking slowly from bed to hallway and back. Her fine motor skills have pretty much come back up to par: her handwriting looks not a bit different than it did two weeks ago. What she needs now is strength, a bit more gross motor skill recovery, and to re-establish her balance. And that last might be a function of strength. It’s easy to lose your balance when your legs are trembling from the effort of holding up your weight.
As her strength returns, though, she has enough spare energy to start processing what’s happened to her and how her life has changed from what she remembers. All sorts of fears and resentments bubble up, as they should, and can trigger epic temper tantrums that require a great deal of patience to weather, diagnose, and treat. We’re trying as hard as we can not to medicate her into quiescence, because that’s not her and it’s not our way. We want her fired up and ready to fight, her old fierce self. At the same time, we don’t want her to unnecessarily suffer real, physical pain.
It’s a tough line to walk as a parent, because we are determined not to baby her, but at the same time we have to constantly make snap judgements as to whether or not she’s really at her temporary limits, or if she’s using her situation as an excuse to be a defiant five-year-old. Then we second-guess our snap judgements. Sometimes we make the wrong calls, and learning to accept that is part of our adjustment process. We keep moving forward just as she does, slowly relearning how to do what had become second nature, stumbling, regaining our feet, and taking another step, and another, and another.
In between the storms and second-guessing, Rebecca is her old impish self, constantly smiling like she has the world’s greatest secret on her lips, laughing quietly at the funny movies she watches, making silly faces at the nurses, and generally charming the hell out of anyone she meets. She is herself, something we had feared (with good reason) might not be the case. That alone is reason to celebrate.