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Being a survivor takes dedication. From my vantage point, you have to be many things. The first, and perhaps most obvious is that survivorship requires strength. Strength is required no matter what stage of recovery or healing the survivor is in.

I wish I had found Alix Kates Shulman’s memoir "To Love What Is: A Marriage Transformed" in the first month of my husband’s severe TBI, and yet I may not have absorbed it the way I did reading it fifteen years post-injury.

When brain injury comes into a family, it is an unwelcome guest, sitting at the table every single night. In time, you have to learn to accept the guest, and what the presence of it means. You can’t just pretend it isn’t there, and you can’t act like you know the totality of all that is involved.

A few weeks ago, I had the opportunity to share with a group of caregivers and survivors at a rehab. From the moment they entered the gym, I sensed their exceptional spirits. This was not surprising, as I have discovered the brain injury community to be comprised of the finest people you will ever encounter.

We’ve all see that face. The well-meaning face of pity: the downturned brows and lips, the misty eyes. After Hugh’s TBI, I seldom met a friend or acquaintance who did not flash this expression at me every time we met. My daughters felt it, too. The funny thing is, we did not want pity. We’d had our fill of it in the ICU.

I’ve kept in touch with a handful of healthcare professionals I had met in the early days of Taylor’s ordeal. These people not only taught me about the physical effects of brain injury and ways to participate in Taylor’s care, but they also taught me another invaluable lesson: the art of letting go.

Stephen Hawking, a world-renowned scientist who recently passed away, had a brilliant mind that was trapped inside a paralyzed body, and I could not stop thinking about how the opposite is often the case with traumatic brain injury.

When my husband suffered a catastrophic brain injury at age 29, I rarely appreciated being told that God had a plan for us. I certainly didn’t want to be coached to keep my eye on the prize or to search for those silver linings. I wanted to cry out in pain and to sit in it for a moment. I simply wanted it to be what it was: hard. And I wanted that to be OK with everyone else too.

My son’s brain injury has taught me over and over again that I often have little control over life’s circumstances. But that does not mean I throw caution to the wind. Here are a few things we've learned regarding legalities and Taylor's ongoing care and future.

What do readers in the brain injury world want? I can only guess that like me; they want it all: practical solutions, resources & references, a place to vent, a place to grieve, a place to interact with people who "get it."