In the last couple of weeks I've had a few conversations with family and friends that made me realize that there may be folks that do not understand why Sofia's Hope exists.
There's the obvious reason which is to honor Sofia, her life, her point of view, just everything about her. And yes it's true that without Sofia there would definitely not be a Sofia's Hope. However, that’s not the reason.
Then there's the thought that it's because as her mother, I need it to help me deal with her death. By keeping busy sharing her story and the sad reality of childhood cancer, I am able to find a purpose and a certain sense of peace. And that's definitely not it!
So here’s the deal, the first thing people need to understand is that Sofia's Hope would exist whether Sofia were alive or not. The purpose of Sofia's Hope is to more formally give back to a community that supported me and my family unconditionally. How could we not give back? Since Sofia was in treatment back in 2004, I needed to give back. I worked with Gymboree to offer classes to children in treatment at discounted price. I bought
tissue boxes and candy for the clinic as well as small toys for treasure chest. I became an official volunteer at Nicklaus Children's and on a monthly basis hosted arts & crafts time at 3North (Hem/Onc ward). I asked friends for money and pooled it with my own to buy Visa gift cards for teen patients as Holiday gifts. With Carlos' help we donated Cisco videophones so patients could connect with their family and friends while "quarantined". Of course this was all before iPhones, iPads, etc. Still, I wanted to do more.
Sofia's Hope exists because I saw how blessed we were within the ugly world of childhood cancer. We had great insurance. Carlos was employed by a company that never threatened his pay, benefits, etc. if he wanted to be at Sofia's bedside. He took whatever days he needed without reductions in pay or fear of losing his job. We never suffered financially and were able to offer our girls an amazing life filled with experiences of which many dream. We had the educational background to truly understand what was happening and ask the right questions. We had family and friends who supported us by providing us meals for three months straight, and coordinated masses and rosaries for weeks and months. And on and on!
And even with all this support I still felt stressed, scared, and overwhelmed. I couldn't begin to fathom how all these other families felt. And that's why Sofia's Hope exists! To help kids with cancer and their families feel supported and loved. To offer them moments of togetherness and joy and HOPE! To help them forget if only for a brief moment of their harsh reality.
Sofia’s legacy is the lasting impact she made to those who knew and loved her. And I remain proud of the individual she was every single day. But the WHY is ultimately the HOPE of making a positive difference in the world of childhood cancer.