Over the past ten years I have told Casey’s story more times than I could possibly count. Depending on the audience and time I have to share I may focus on different points of her story, but regardless I always ended the same way “No one knows what the future holds for Casey. Only time will tell.”
Sometimes I speak to large audiences, some small, some public and some even here in our home. I have always liked to share Casey’s story. I feel that by sharing her story, we can help teach caregivers how to best care for complex children like her. I also feel that by sharing we can connect with other parents and offer some hope or just let them know they are not alone.
One specialty that played a HUGE role in Casey’s life, and helped us to provide a good quality of life for her is often seen in a negative light. Ever since we learned how much Palliative Care helps families and children like Casey we have worked very hard to try and help eliminate that stigma any chance we get. Before, people heard palliative and immediately thought, hospice, death and dying, and it was a last resort specialty. That’s no longer the case. Palliative is not about death, they are about life. This specialty exists to improve the quality of life for complex patients. Yes, they also play a big role in hospice, but we were with palliative for the last 7 years of Casey’s life (that’s MOST of her life). Hospice was less than 24 hours.
Anyhow, about a month before Casey passed I was asked to speak to a group of nursing students about palliative’s role in Casey’s life. I agreed and confirmed the presentation for 4/28/16. A few weeks ago they reached out to remind me and provide some additional details on where and exact times. I had forgotten I agreed to do this at first, and then I felt very torn. This is a topic we feel very strong about and we see Casey’s life as a great example of the effects of palliative. It has only been a little over a month though, and we just celebrated her first birthday in heaven. I wasn’t sure if I was up for it.
I explained my situation to the organizer, and decided I DID still want to share. Some of my friends told me it was a bad idea, and tried to talk me out of it. I nearly cancelled many times. I talked to Tim about it, and if it was any other topic I would have cancelled, but it was a small group and a story we feel that needs to be told. I made my way to UT School of Nursing yesterday afternoon with determination and trepidation.
I’m not sure how I was able to keep it together, Casey probably helped with that, but somehow I got through it. I told the students before hand that I have told this story countless times, but that this is the first time I am telling the story with an ending. I did get a little emotional, and had to work really hard to stay focused, but I did it. Telling the story with an ending is very different. Everything felt so final and real. No matter how Casey was doing (good or bad) in the past, the story always ended with hope.
Casey’s story does have an ending now and that is something I will have to adjust to. The ending does still offer hope though. Through the help of palliative we had nearly 10 years with Casey- 10 wonderful years & a lifetime of memories we now cherish. With the added help of hospice at the end, Casey’s death was beautiful and peaceful in so many ways. It was intimate with just the 3 of us together. We got to say goodbye. Casey was able to tell us it was time, and everything was done her way. There were no sirens, no hospitals, just love. We have used her life as a positive example for so many years (and we will continue doing so), but her death can now serve as an example as well.
I miss her so much, but I am so proud of her. The work she inspired during her short time here on earth will continue in her name. She continues to touch and improve lives everyday. She was the most amazing person I was ever lucky enough to know. Keep up the good work, Pumpkin, we love you so much!