Falling On Deaf Ears… the Consequence of Silence.

By: Erin Santos (Isabella’s mommy)

I’ve written some things in the past that have made a difference or gotten someone up out of the chair. For the first time this year I thought, I’m not going to write something because people finally get it. I’ve written about how “awareness” is a bullshit word and how instead we should take action. I’ve written about what all cancer steals from a family when someone dies. And last year I wrote 30 days of “whys”. Why people get divorced, why I stopped visiting her, why we cremated her and more. I have poured my heart out year after year, picking my scab and pulling back the curtain on what cancer, loss, and heartache is really like. So I figure you get it now.

Each year the foundation grows more and more. We see more dedicated people coming to support the cause who never even knew Isabella. People would tell me what we are doing here is phenomenal. Most non-profit’s had a run rate between 8-10 years before they close their doors. They slowly lose their supporters. But we were different somehow. We had some secret sauce to what we were doing that meant we were going to survive the charity down turn. Even more amazing is that we were doing this all without Isabella standing on stage or asking people in Target to come to her race. Maybe we were going to be the charity that survived the industry down turn because our supporters were lifelong supporters.

I have to say, today I’m scared.

When you are riding on the wings of a ghost year after year, you begin to have moments where you think your message is falling on deaf ears. In years past, it seemed easier for me to rally the troops. But this year I feel like something changed. I sit back and watch social media and see these people on the Dream Team posting pages after they have gotten up on a Saturday morning while everyone in the world is snug in their bed. I see them fighting mentally to run in the heat and humidity, up hills – putting in mileage they never dreamed they could accomplish. Only to finish with their body’s aching, limping to their cars. They go home and push out their proud morning to their supporters and often times get no donations to support them. We have runners that show up every morning, to save kids they don’t even know – someone else’s kids – and have trouble receiving $500 in donations over a period of 6 months of training. How is that possible? I worry I have somehow let these people down by not providing them with a child they can fight for. Am I not supplying content that is meaningful that will make their supporters understand how important this is?

I watch us work all year towards a race that is dragging in numbers. I have to tell myself that people always sign up late, but we all watch as excuses come in about why someone can’t attend. Soccer games, vacations, family in town, and a party the night before (possible hangover)… the list goes on and on. It’s so hard for me to hear the excuses when I watch my team work tirelessly to make the day so amazing for everyone. I want the entire city to show up and appreciate all they have done.

I think it’s hard because I watched Isabella walk Time Warner Cable arena, on a beautiful day when all her friends were playing, to collect money for the Ronald McDonald House, or bake cookies for families or give her toys away.   No matter what she had going on – she knew what was important and made the time for it. Stuart always said that by watching Isabella, you always realize the things you really thought were important – really aren’t. She always got it. I love those that get it. I love seeing people that have been there year over year – no matter what their Saturday looks like. I love when I see people at the race who come with their company that is in for the weekend. I love people like the Gold family who are currently fighting neuroblastoma themselves, who can’t come to the race because they are taking their family to Disney. (Talk about a good excuse!) Instead they created a team and are constantly recruiting people to come to the race under their team name. They created a FirstGiving page and have raised over $3,000. Just today their family was here picking up our ISF tent to hold a lemonade stand on a Saturday night to raise money for a cure that might help their own daughter. They get it.

I wish I knew how to motivate others into action like I once did so easily. I wish the Dream Team was being rewarded for the 8 miles they ran for other people’s children this morning, and again and again when they ask for your support. I hope my ISF team feels a huge sense of accomplishment when they see the waves of purple 2 weeks from today. I hope everyone who supports ISF feels proud when we are able to send funds to advance treatment is Isabella’s name. I wish Isabella were here so you all had someone to save who you could see that morning. But she isn’t here because for years, these pleas have fallen on deaf ears and her death was the consequence of silence.

My hope is that instead of liking a page, sharing a post or being aware of her passing – you make the change to do something about it. These kids all need us to change from awareness to action. The clock is ticking.

Sign up for the race. Be a Phantom Runner. Create a Team. Create a FirstGiving Page. Support a FirstGiving Page. Just do something.