Ten years ago this morning, in the Children's Hospital of Philadelphia, Christi exhaled her final breaths as Shayne and I held on to her and told her what an incredible girl she was. While we were thankful that her horrific pain and suffering finally ended, we knew we'd mourn for her the rest of our lives. Nothing that I have – not the beautiful and cherished daughter, nor the beloved and adoring husband, nor my loving family, nor my amazing career, nor the marvelous travel adventures I experience – can ever make the slightest dent in the loss of my daughter. But her loss is the greater. Christi had to endure tremendous pain, constant disappointment, and ultimately she had to leave a remarkable sister, family, friends and teachers; her dreams never to be realized. Her life was taken too soon. I think about her every day and some days - usually holidays and anniversaries, are much worse than others. I often wonder what Christi would be like at 19 and if she really knew how loved, important and treasured she was.
For those of us who wear this invisible badge – the parents of dead children, our grief never ends. Over the past ten years, I've learned each person trudges along his or her own solitary path. The blight of losing a child is different for every person afflicted. I've experienced a wide range of emotions. I still sometimes struggle with sadness and anger, and find myself envious of parents who have healthy children, especially when those children don't appear to be wanted or well-taken care of. I know envy and anger are horrible emotions and ones I never experienced until Christi was diagnosed with cancer, but they still overwhelm me at times and I blink away tears trying to deal with it all.
And although Shayla has blossomed into the most incredible, intelligent and loving 17-year old gal, she struggles too. Despite her outward appearance and decision to have a positive attitude and sunny disposition, I know things aren’t always bright on her inside. I'm thankful Shayla is still that same beautiful soul with a heart of gold who jumped into my arms, buried her head in my shoulder and sobbed ten years ago tonight after we made the ten hour drive home and told her that Christi didn't pull through this time. My heart breaks that Shayla doesn't have a sibling. Next to Christi suffering the ultimate, Shayla suffers the greatest loss. I find myself trying to shield and protect her from the pain when people talk about doing something with their sister/s, something Shayla will never be permitted to enjoy or grow old with.
Sadly and shockingly, the survival rate for stage IV neuroblastoma when diagnosed over the age of 36 months, has not improved since Christi was diagnosed 14 years ago this month. It is still a death sentence. Last week Shayla wrote an essay and I will share a part of it: “The reality is over the past thirty years only three new drugs have been approved for use in treating childhood cancers, compared with hundreds of drugs developed for adults. This disparity results from a profound lack of funding. Pediatric cancers receive less than 1% of government funding for the NCI (National Cancer Institute) and in the private sector, pharmaceutical companies have little incentive to develop treatments for children.” Therefore, I write -- If you have a few extra dollars and find it in your heart to give, please consider donating to one of our family's favorite causes for research for pediatric cancers, Alex's Lemonade Stand.
Ten years ago this morning I gathered Christi's things and made a social worker promise me she would not to leave Christi's lifeless little body until the funeral home workers came for her. Then we cleaned out our room at the Ronald McDonald House, donated Christi’s awesome special stroller, and drove home from Philly. I remember stopping for a bathroom break and we made ourselves buy a sandwich to split knowing we had a lot to do and needed food even though we couldn't imagine ever being hungry again. As I stood and held the door open for people coming out of the fast-food establishment, I remember thinking, "They have no idea my daughter died a couple of hours ago and I'm standing here holding the door for them, trying to smile. This is just crazy." Today, please do a random "Christi Kindness". This was something talked about at her funeral based on the fact that even though Christi was fighting a terminal beast, she would often to do things for the "sick kids" -- taking them art projects, reading them stories, or giving them drawings she made to make them happy. Despite not feeling well, as she often felt, she still wanted others to smile. Let's all try to do a random "Christi Kindness" today in honor of a brilliant little blonde with an infectious smile and laugh, and with whom I hope to reunite with this precious little soul in a much better place one day. May God watch over and bless everyone. Thank you for loving Christi – and all of us!