Caroline wired up for her EEG.

My past and present collided in the most painful way imaginable, last week. My heartbeat increased, my palms and neck started sweating and I started to shake uncontrollably. I didn’t realize there were tears streaming down my face until my oldest daughter asked why I was crying. Without thinking, I went up to my room and curled up in ball on my bed. I closed my eyes tight and the images came flooding back. The pain was overpowering. I hadn’t experienced flashbacks like this in years but the conditions were right for the perfect storm.

When I walked in the house, the image that set me off was that of my younger daughter wired up with an ambulatory EEG. I made all the arrangement for this procedure so I should have been prepared. I knew she was having this EEG to determine if the spells she had been experiencing for months were epileptic seizures but all that didn’t matter. Because in that moment all I could see was the EEG an image strong enough to transport me back in time ten years.

I was suddenly in the PICU room of my kid-sister (18 years my junior) who was seizing on full life support. My eyes were glued to the EEG monitor that was recording brain activity. After a long harrowing battle with a brain infection, I watched as Brit fought with everything she had. On her last day of life, the contents of multiple crash carts were utilized to bring her back to us, her PICU room was turned into an operating room because she was to fragile to move, she was attached to ECMO (heart-lung machine) and many other forms of life support. But in the end none of the extraordinary measures taken would be enough to revive her.

Brit as I chose to remember her, a few months before she got sick.

In the days before she passed my eyes were glued to the EEG monitor. At first, I was hoping for no activity because the doctors wanted to protect her brain from the seizures than later I was hoping to see the brain activity as they started to back off the medicine that put her in the medically induced coma. Those little lines on that screen were all that mattered to me in that moment.

In the end, Brit lost an unfair battle. She had nearly beat the brain infection that originally landed in the hospital but the contaminated Heparin paired with the medicine that put her in a medically induced coma to stop the seizures were too much for her body.

When Brit entered this world I cut her umbilical cord and when she left I held her hand. Sandwiched in between, Brit taught me about the importance of life.  Brit loved like she had never been hurt, danced like no one was watching, and tried until she got it right.  Her insight and perspective was spot-on. I like to think that the way Brit led her life was a reminder that, that which we value in childhood is that which we should value throughout our life.

It was also through Brit’s illness that I learned how to advocate for a patient. Many of the skills that make me an effective special needs mom, for my daughter – Caroline, were learned advocating for Brit.

That whole night, I spent reminiscing about Brit. I laughed and cried to myself and I felt feelings that I hadn’t touched in a long time. In a few weeks, it will be ten years since we lost her. Brit will be gone longer than we had her. And that makes my heart ache in a way that I can’t describe.

The next couple of weeks will be trying. As always happens this time of year, I will be reminded of Brit’s painful last days on this earth. The memories are more intense this year already – I think that is because we are passing the milestone of Brit being gone longer than we had her. How can it be 10 years already?

One of the hardest things about living without Brit is the fear that she has been or will be forgotten. For that reason, if you knew Brit or if you knew of her, I ask that you think of her the coming weeks, say her name aloud and help keep her memory alive.