“Did you hear about Brianna?” Asked a mom at the school playground.

“What?” I answered a question with a question.

“She passed away earlier today.”

“WHAT?” I gasped. What was this woman talking about? Brianna was stable and waiting for a heart. Maybe this woman made a mistake.

I went to the Hope For Brianna page and nothing was there. There was still hope. It felt weird, and my brain couldn’t process it.  This woman may, after all, not be a reliable source even if she just told me she was at the principal’s office and they are having an emergency meeting with the teachers.

Not happening. I was in denial.

My boys were a terror today.  Each, separately, got the lowest conduct grades possible for the second time in the past weeks.  In the back of my mind, I had the knowledge that Brianna had passed away but it wasn’t clicking.  My thought turned to my own children.  I had to deal with the consequences for their behavior today, and then, later, tell them about Bri Bri.

In the midst of my haze, I kid you not, Fearless threw a massive tantrum about homework.  He cried so much that his paper ripped as it became wet from his crocodile tears.  I had extra patience, thinking how lucky I am to have my boys.  I didn’t budge.  Homework had to be done, wet or not.

Then, in perfect timing, when Fearless finished Dreamer threw a massive tantrum because it dawned on him that he would not have television tonight because of his conduct at school.  Turns out today was one of those rare occasions when he actually had free time to watch it.

It’s become standard procedure in this house.  Fearless loses his ability to watch Minecraft videos, and Dreamer to watch TV if their conduct card is lackluster.  Again, I wouldn’t budge.  Thinking of the Medina’s and how I am sure they wished they were having the problem I was having right then and there, I kept it together, and did not turn into the yelling cranky mami that I am capable of being.

After things calmed down, I let some more time pass.  I wanted the school behavior topic to be worked out before I told the boys about Brianna.

But what if it was just a rumor gone wrong?  Just then, I received an email from the school with a lovely picture of Brianna announcing she had passed away.  It was real.

The boys took a shower, everyone was back to their normal selves and we had a pow wow on my bed.  I told them the news not knowing what to expect.  They didn’t quite understand “passed away.”

“Wait. Brianna died?” Dreamer asked me.

“Yes honey. She did.”

Were we really having this conversation? I don’t remember anyone dying in my childhood.  This was unchartered family territory.  I could see they haven’t quite processed it yet, and the advice I got was to be gentle, and be patient.  Be honest but concise without a lot of details.  Let them ask questions, and answer kindly.

That is what I did.

In case you missed it, Brianna was a second grader in Dreamer’s class.  The day I arrived from Ironman Florida I found out she had been diagnosed with a rare heart condition and taken to Gainsville.  I then went on a mission to help the family in the small ways I could: fundraising through the school and running the Miami Marathon. You can read about that here and here.

My boys were very much involved.  They helped me count money we collected at school, they opened envelopes, they ran a 5k in her honor.  Brianna’s little brother was in Fearless’ class.  This was someone real to them.

Throughout the rest of the evening, questions and comments would pop up here and there and I answered to the best of my ability.  I know it is all sinking in.  For all of us.

I put the boys to sleep and I got an email from the volunteer coordinator from Hope For Brianna who told us the news again.  And that is when I cried. 

The flood gates were opened and I just let myself flow.  I felt such sadness.  I posted this picture of her on Facebook as many of TriathlonMami followers had donated to her:

This is how I remember her: strong and smiling.

Throughout the months, as Brianna was at Shands Pediatric Cardiac ICU where she received a Berlin heart, I would see her wither away in the pictures.  But she was always smiling, her parents were always hopeful.  It was their optimism that pulled me through … as if they didn’t have enough to worry about, they were communicating with us and putting on a brave face.

Brianna had a big group of people rooting for her, and volunteers who were fundraising so that finances would be one less thing the family had to worry about.  One of my activities was to set up a fundraising site where runners could fundraise through races.  The same way I raised funds through running the Miami Marathon so did others.  From local 5ks, to the Boston & Tokyo Marathons to even a triathlon, people from different walks of life were training and rooting for Bri Bri.  Together we raised close to $5,000 for Brianna’s Children’s Organ Transplant Association fund.  We transferred the money last week, and when I asked how she was doing, at that time it seemed she was doing great.  After a crisis a few months back, Brianna was finally strong enough to receive a new heart should one become available.

I don’t know what life was like at Shands, or how Maria, Brianna’s mom, organized their life. I had three days of ICU with my dad and it was awful.  The logistics of who was where when, were difficult enough to coordinate on top of the stress of being in an ICU.  Brianna had many long months, I am guessing around four or so.  She had a little brother that still had to go to school, and parents who still had to figure out their work situations. They have all been through the wringer.

I don’t know what happened yesterday, and I don’t want to try to guess.  My friend Connie, who lost her son Matt to a drunk driver (you can read about her and our efforts for road safety here), is my teacher on parental grief.  She lives in my nightmare, and now Maria does to.  Losing a child is my nightmare; I cannot imagine anything worst.

But from Connie and her loss I have learned that one of the things we can do to help the Medina’s, for the months and years to come, is not to forget Brianna’s brief life.  We must celebrate her, remember her and talk about her.  The Medina’s will never forget their child nor would they want to.  Why should we?  Speaking about Brianna, her smile, her courage, and her dimples is not going to bring her parents more sadness than they already feel.  That is probably not possible.

So … did you hear about Brianna?

I did not know her well.  But she was a super cute, brave, eight year old girl who loved dolls and coloring, her friends and family.  Though she had a sick heart, it was big.  One of the last pictures on her Facebook page was this:

A heart filled, thank you garland for her nurses during nurse week.

Bri Bri, you may not be here in a way we can see you.  But you will always be here in a way we can feel you.  Thank you for showing us courage in the face of your illness, and for teaching us to always have hope.  You will never be forgotten.  Never ever.  I promise.

You can still donate to Brianna’s COTA campaign to help cover the costs of her extended hospital stay at COTA for BriBriM.