“How do you do it? If my child died I don’t think I could get out of bed again, let alone start a foundation.”
I can’t tell you how many times I’ve been asked some version of that question since I created the Olivia Caldwell Foundation in November 2013. Well meaning people marvel at the super-human strength I must have to be able to run a foundation in honor of my daughter after her death.
But I am going to let you in on a little secret… I am far from a superhero. I don’t have extra strength and her loss has been anything but “easy” on me.
I never got to have the “normal” experience of mothering my only daughter. From a scary, premature birth, to time in the NICU followed by months of supplemental oxygen, Olivia’s start to life wasn’t a simple one. And then just one week after losing her oxygen tank, Olivia was diagnosed with brain cancer at 4 months old.
And unsurprisingly, life after that diagnosis was anything but easy or normal. Our days were filled with a tremendous amount of love and many joy-filled moments, but they also came with a huge amount of doctors appointments, days in the hospital, medications, scans, anxiety, and fear. Cancer took everything that Olivia’s life should have been and ripped it up into a million little pieces.
I was her mother and I would have done anything to keep her alive and to make each moment she had as beautiful as possible; and so throughout the 20 months we had together, I was completely devoted to that little girl. I held her through every single chemo treatment and many nights were spent with her asleep in my arms. I learned how to access her mediport to give her fluids if needed, give her complex medications, and to become an advocate for her at absolutely every turn.
And then it all stopped without warning on October 22, 2013 when my little girl died pretty suddenly, and my whole world stopped spinning. Just 20 months of being Olivia's mother was never going to be enough.
I spent the first few days after her death in complete shock. I felt like I was floating out of my body because this couldn’t possibly be real. I had waited my whole life for a daughter of my own and then she was ripped from me before we even got to live our lives together.
But then one day I was praying in the shower, eyes nearly glued shut from all of the tears, when I knew what I was supposed to do. I was never supposed to stop being Olivia’s mommy when she died. I was being called to be her mommy in an entirely different way. And that was the day the Olivia Caldwell Foundation was born.
The steps to creating the foundation happened quickly, but running it over the years has been anything but easy. I miss my daughter with my entire being. Even nearly 8 years later there are times my entire soul aches for her and it is exceptionally hard to get out of bed in the morning. But what keeps me going is knowing that I get to spend every day still being Olivia’s mom; that role just looks different now.
Instead of spending my days at the hospital with my daughter or navigating through appointments, I spend my days fighting to ensure no other family has to go through those experiences alone thanks to our Patient Advocate. I also fight to bring better access to pediatric care in Wyoming so more families can receive the best care for their medically complex child without having to travel to Denver constantly.
I will also always fight with everything I have to make it possible so the next child that’s diagnosed with cancer doesn’t have to lose their life. As bittersweet as it is for me, Olivia’s legacy through OCF has already done just that for other children who receive the same brain cancer diagnosis she did. This happened when our research team identified an effective oral treatment a few years ago for that specific subtype of cancer.
So how did I do it? How did I have the strength to create a foundation so soon after my daughter’s death and to keep running it years later? To me there wasn’t really a choice not to. I didn’t choose to have my daughter get cancer or to have it take her life. But I will always choose to keep being her mom in whatever tangible way I can, and to make sure my daughter is never forgotten even though she only had a short 20 months to live here with me.