Tonight's picture was taken in January of 2009. The week before this photo was taken we went to New York City to start Mattie's experimental treatment. Along our journey, we went to the Empire State Building. I will never forget that visit because it was during the week and there were no lines to get on the elevators and to tour around. We truly lucked out, because of Mattie's low immunity, I was never big on crowds. Mattie loved the adventure up to the 102 floor! I am NOT big on heights, but since this was something Mattie wanted to do.... we did it! We then stopped into the gift shop, and purchased this erector set of the Empire State building. When we got home, it was constructed! To this day, this Empire State building sits in my office and it reminds me of our time together and Mattie's courageous fight against osteosarcoma.
Quote of the day: I keep myself busy with the things I do, but every time I pause, I still think of you. ~ Amy Sparling
Reflecting on this past month, I have had some truly powerful email communications with families of children with cancer. During the December holidays, we granted four Wishes, to children and in the process have had the opportunity to hear from families about their experiences, insights, and feelings. I am very honored that we could make these Wishes possible. Wishes such as 1) a trip to Branson, MO to see Dollywood and Christmas lights, 2) a trip to Disneyland, 3) a cello and cello lessons, and 4) a trip to Galveston, TX to go to the beach and tour museums and gardens.
In the process of writing to families, it causes me to use the skills and insights I have gained from Mattie's cancer journey and of course my own journey with grief and trauma. Here's the reality of facing a loss..... there is NO TIME CONSTRAINT to grief. Our society thinks that things return to normal after year one..... newsflash.... they don't! I am very honest with the families I interact with, not because I want them to be depressed by what I am telling them, but because I want them to be armed with factual information! When Mattie died, NO ONE prepared me for this forever pain, or told me that with each year the grief, loss and trauma evolves with us. I assure you, that would have been helpful, because here is what happens if you don't know this..... You think that something is WRONG with you! After all, when year one was over, why didn't I feel any better?! It would be very easy to pathologize long term grief, which is why I constantly tell families that the loss will be with you forever, but what happens with time is that this loss becomes more familiar. Over time, you develop strategies and coping mechanisms to manage holidays, milestone moments, daily pains of child loss, being around other children, and functioning in society and having a future without your child.
This same philosophy also applies to survivors of cancer, and yes parents of children with cancer are also deemed survivors. Parents are not the actual patients, but they endure every aspect of the treatment with their child and for parents nothing is more traumatic than seeing your child face a life-threatening disease. Once the medical treatment for cancer is over, many parents of children with cancer are led to believe that life returns back to normal! Again, another newsflash.... it doesn't. The psychosocial issues continue when the treatment stops and not preparing families for this reality, to me, sets them up for failure. Once a child survives cancer, a parent will always be hyperalert to every cold, cough, and fever. The worry about secondary cancers arising from the treatment and the emotional and financial toll on the family lingers on. But just like bereaved parents, parents of survivors develop strategies to cope with all these natural anxieties, fears, and feelings, and learn to do so hopefully without the baggage of being labeled with having an adjustment issue.
Do you know that since our Wishes program started in 2022, we have granted 56 Wishes, to children in 25 States, totaling over $70,000 in Wishes! I am very proud of this achievement for Mattie Miracle, and today a mom wrote to me and thanked me. She said she has read a lot of books, but no one has been as spot on and honest as me about grief. I can't tell you how many people tell me to write a book, and I absorb these requests. All I can say is YES ONE DAY, I AM SURE THERE WILL BE A BOOK.
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