How I Finished Mourning the Loss of a Child Who's Still Alive

My oldest daughter, who is now 11, was a caring, sweet girl who loved her family and friends. She was shy if you didn’t know her, but to those close to her, she was outgoing and full of laughter. When she was 6 a horrible turn of events forced everyone in her life say goodbye to the “old” Faith and begin to become familiar with the “new” one. Although no one for one moment stopped loving her, it was a huge adjustment — one that will likely be on going for the rest of our lives.

Faith fell ill with herpes encephalitis. When she first became sick, there were whirlwinds of tests and explanations — none of which I understood. When the neurologist showed me pictures of her MRI scan that first night in intensive care, I didn’t understand. I certainly didn’t understand the severity of the infection in her brain or what this meant for her. I cried when he told me how serious it was and that she will be lucky if she pulled through, and then I was left alone. I’ve never felt so alone.

I could spend days going into every detail of our 103-day hospital admission, but I’ve pushed aside many memories, trying to forget the pain, trying to move on.

We were moved out of intensive care and onto a medical unit, Faith still unable to move or speak, just lying there staring straight ahead. Another MRI revealed the infection had caused extensive brain damage. We were told to be prepared for a “new” Faith. How does a parent prepare for something so horrible? How does one adjust to going from having a sweet little girl to this new girl who only stares off into space? The answer is you don’t. You put your feelings on hold and busy yourself with her care and talking to doctors and family and friends. You don’t allow yourself to think or breathe. On the nights I was home, I would feel empty. Being home forced me to temporarily deal with all the thoughts and feelings I’d put on hold. Random things would make me think of all that would never again be a possibility. It all seemed so unfair.

Recovery from a brain injury is slow and painstaking, and each small step forward meant two steps back. We were told again repeatedly that this is likely as good as it gets and once again reminded that this could be the new Faith . This girl, this new Faith, slowly relearned how to stand, how to walk and how to talk — but where was the Faith I knew? Where was the daughter I raised for the past six years? She was gone, and in her place I found someone new, someone who can make me laugh and cry at the same time, someone who has the ability to light up the room with a smile, someone I love fiercely. Time has passed, and things in many ways have not gotten any easier, but one thing is clearer.

There isn’t an “old” Faith or a “new” one. There is Faith.

In the early days, it was hard to let go of my hopes and dreams. Although it took a long time, I’m no longer sad. I just have new hopes and new dreams and all in all, a new outlook on life.

I will always get upset about what’s happened, and it will never be fair, but I’ve moved on. I let go so I can enjoy the seconds, minutes and days without being surrounded by grief. It will always be an uphill battle.  Faith’s brain damage is extensive, she’s lost almost all of her frontal lobes, and the damage extends beyond that.

But I am strong and I am ready to link arms with Faith and head up the hill.

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