The Wayward Soul

**The names and details below have been changed to protect the identities of those whom this story is based off of. This story was shared with permission from its original source.

This is the story of a slow fade… a story of a soul caught in murky waters… a story of heartbreak… a story…

David is a good man. He grew up in a small town in Wisconsin and performed well in school, participated in several sports and extra-curriculars, attended church regularly with his family, and showed genuine care and compassion for those around him. When David met his wife, Catherine (“Cat”), he was excited to start a life with the girl of his dreams, to find a good job, and settle down to raise a family. The couple was ecstatic to learn that Cat was pregnant with their first child, and they started envisioning what life would be like as a family of three. Following a long, yet graciously uneventful labor and delivery, David and Cat welcomed their baby girl, Phoebe, into the world… They found themselves welling up with joy, love, and anticipation at the presence of their new bundle sleeping in their arms.

Days slowly transitioned into weeks and months. All was well in the home. David was working a full time job that he enjoyed, and Cat especially appreciated being a stay-at- home mom. They were finding their rhythm as a family. David and Cat loved spending time with their daughter. Over time, as they marked and expected the various developmental milestones for Phoebe, they began to notice that some of these milestones were beginning to extend beyond what Phoebe’s pediatrician would consider within “normal limits”. During this time period as well, the couple noticed some issues that Phoebe was having with her eyes. This sparked some urgency in Phoebe’s parents to get her checked out, but they didn’t suspect anything critical was going on with their daughter…. until it became all to clear that it was. After a series of invasive and painstaking tests and exams, it was determined that Phoebe had a degenerative neuro-developmental disorder and the prognosis was bleak to say the least. David and Cat felt devastated at the news and the first wave of fear and grief gripped their hearts at the uncertainty of their daughter’s future.

For the first few months following the diagnosis, David appeared to be handling the news with a positive attitude and a willingness to go the extra mile for his family as they tried to settle in to a new rhythm, one filled now with doctor’s appointments, medicine changes, and therapies. Little did Cat know, that David, while on the outside seemed to be superdad, on the inside was beginning to rot. There was a fear and grief within him which grew and grew. It got to the point where every time David would look at his baby girl, his eyes would sting hot as he choked back his tears as he was reminded of the devastating prognosis given to them by doctors several months before. He quitely begged God to heal her, or to at least let him take her place… she was innocent after all. What had she ever done to deserve something like this? He couldn’t let on that he was dying on the inside. He had to keep plugging.

Time continued to rush slowly by… Phoebe had developed epilepsy in relation to her complex developing brain disorder…. just another blow to the hearts and minds of Cat and David. Nothing could ever possibly describe the state of David’s heart on the night he experienced his baby girl’s first seizure… knowing that this was the start of a life which doctor’s declared would become “normal” for the rest of Phoebe’s life.

David found himself “taking the edge off” more frequently. He was never a heavy drinker, but even Cat at one point noticed out loud to David that she thought she noticed an increase whenever they enjoyed an adult beverage together. David reassured her that he noticed it too, but ultimately that it was under control and they both could cut back together. David said these words and believed these words, but the reality of the state of his heart would require more intervention that mere will-power. David found himself buying alcohol more frequently and he would even sneak one or two drinks after Cat went to bed. David was slipping into a secret love affair with alcohol. What once was used to relax and enjoy with friends and family was now becoming his own medication to take away the strong emotions he was feeling… he couldn’t tell you that he was feeling fear or grief… they were simply strong emotions. To a man like David, it was not okay for him to express that he was feeling anything like this. He slowly learned that he could think more clearly when he had a few drinks in him… he felt like a better father and husband. He felt like he had found a way to keep himself propped up… still “coping” with the tough health challenges his daughter faced. In the eyes of the world, David was still superdad… in his own eyes, he was a fraud with a secret that had the potential to destroy his marriage and life.

It was as if lightning struck him. How had he gotten to this point in life? The slow fade to this point was so discreet, yet comparing his life and heart to that of the David from before his daughter was born, it was almost like looking at a completely different man.

David’s story is intended to highlight the complexity of grief and fear in the human experience. The manifestation of his internal struggle is just one of countless other manifestations that could be found in other people dealing with similar circumstances as David. Over time, I’d like to refer back to David’s story as I wrestle to convey the impact that grief and fear have on our hearts. David couldn’t name those exact emotions, though he knew something felt “off.” Caregiver burnout, grief, and loss have a way of running under the radar. I’d posit that grief, when allowed some space in or lives, can begin to look more like a friend… it can come to humanize us to our families and to the world we live in. We don’t have to have it all together. Without giving grief a fair chance to be heard, we risk stuffing and hiding and masking just like David.

As this is my first ever blog post, I thought I would simply share a story to get us thinking. We can get into the science and research relating to emotions, behaviors, and cognitions of grief and fear in the future. But for now, if you’d be willing to reflect for a moment with me, I think the following questions could be helpful as we make connections with David’s story.

1.) How would you describe grief to a friend or family member experiencing it firsthand?

2.) Where have you seen stuffing, hiding, or masking behaviors in your life?

3.) Who in your life comes to mind when you read this part of David’s story? What do you think that person needs to hear from someone who loves them?

Thank you for taking the risk to explore these questions with me!