A Delicate Pendulum

It’s hard to believe that by the time this month’s blog makes it to publication, our family of three may now be a family of four. As TC and I prepare for the upcoming birth of our second child, my head is filled with all the anticipation and questions you’d expect from any new parent: Will we remember what to do? Will we be any good at this? Will we ever get any sleep again? But it’s also filled with the unique worries that can only accompany the experience of expanding your family in the aftermath of brain injury.

Five years ago, after the birth of our son Jack, we always expected we would grow our family. TC and I are fortunate to have siblings 2-3 years younger than ourselves, and we consider them our very best friends. It never crossed our minds that we wouldn’t be able to offer the same to Jack. But, as the story goes, brain injury shattered our world months before Jack’s second birthday, indefinitely putting on hold any plans to have more children.

I grieved the loss of this dream just as I grieved all the other causalities of brain injury: the loss of my best friend, the missed opportunities, and the stability promised by good health. But the issue of future children was more private, something I didn’t feel comfortable blogging about or discussing. In all honesty, it wasn’t a conversation I was ready to have with myself.

Issues surrounding fertility, family planning, and intimacy are common within the brain injury community. An open dialogue about these personal topics is only starting to emerge, however. Often, these issues induce feelings of shame or embarrassment. Often we, and others, minimize their importance in the context of other major health concerns. But it’s time to start breaking down barriers in our communication and acknowledge the full spectrum of experiences known to TBI survivors and caregivers.

For the first two and a half years after TC’s injury, I was pretty effective at squelching my own needs and feelings around these topics. You can only run from your subconscious for so long, however. One day, without warning, I found myself blockaded by an uncomfortable and complicated mental wall. Written in bold was a question begging to be asked: how much compromise would it take to make this life with brain injury work?

If there’s any question our community members are likely to return to over and over again, it might be this one. Figuring out what to compromise, how much, and how to live fully without the burden of regret is a lifelong task for those who have been affected by an injury like TBI. One thing was clear: whatever decision TC and I came to on the topic of more children would have to be made with more thought, deliberation, and risk analysis than any decision we’d made before.

Bringing children into this world is no small matter. There’s tremendous risk involved and possibilities well outside our control as parents. Bringing children into the world of TBI carries the likelihood of even more prominent risks. Among these, issues of added stress and responsibility, questions about how to equally or fairly share duties between parents, and learning how to handle the uncertainty of a very ambiguous future.

We await the arrival of our baby girl with baited breath, but our expectations as second- time parents have changed drastically. I have fears that never existed during my pregnancy with Jack, realizations about the fragility of life, and worries about my ability to single parent if the situation ever required me to do so again. TC’s limited physicality and dependence on rest give him concern as well. We know we must rely on the help of others during this monumental transition. It will be stressful, but also joyful, and we’ll be learning anew each step of the way.

Our family is fortunate for a lot of reasons we recognize. All things considered, TC’s recovery has been truly remarkable, and with patience, many of the options we thought we had lost for good have been returned. As I read through the writings and messages of other survivors and caregivers, I know that we are all faced with difficult decisions as we plan for the future. There are times it feels we are without options. There are times when complications, even good complications, force us to analyze and reanalyze the amount of risk we can safely tolerate. TBI families are constantly weighing our wants against our needs, keeping in balance a very delicate pendulum. This work requires honesty, and it requires tenacity.

I’ll be taking a short hiatus from blogging as we settle into this next period of transformation, but I send you this wish for the months ahead: don’t be afraid of the tough conversations, especially the ones you need to have with yourself. TBI is messy and complicated, and it often brings us to our knees, but it should never cause shame. Life is risky for every person on the planet. We don’t have total control over every outcome. What we do have, however, is the right to an honest examination of what we want, what we need, and how to bring joy to the circumstances we’ve been given.