During my daughter’s diagnosis and entire treatment stage, we were at the hospital for hours, days, and weeks on end. We received an immense amount of support from our community of family, friends, and even the skilled and compassionate medical team. However, it didn’t take us long to realize that we didn’t know anyone else who was going through what we, unfortunately, were; constantly yearning for another day with our child, praying at night we would get to witness our child grow up; experiencing the full onslaught of emotions of grieving the loss of life we had before and knowing we will never return to that life again; and reverently holding on to the power of hope and the courage to fight with every fabric of our being.
Because of HIPPA regulations and patient confidentiality issues, the doctors and staff legally could not put us in touch with other parents who were also going through our ordeal. But, when I met two mothers (by happenstance in the pediatric oncology hallways) I knew I was not alone in my journey; that others knew my pain, others could relate to the fight I was fighting (even though they weren’t quite sure how they are making it through, but they were), that others were finding support and staying resilient. These powerful connections helped me when I was down and lessened the immense amount of suffering which exists daily for these families. There is something to be said when you connect with someone else in your shoes—it gives you hope.
Now, I am on a mission to make my nonprofit, healthcare mobile app a reality. The app will specifically address quality of life and psychosocial issues (e.g., experiential isolation and loneliness) as it serves to decrease suffering and increase hope. The goal is to connect parents to ensure that bereaved families can remain functional, intact, and connected with other parents who are going through what they are. When parents are healthy and supported this often can allow them to be more available to their children, which helps promote healing.
I would love for you all to check out this website and contact me if you have any ideas/suggestions/leads you may have, by clicking on the ‘Contact Us’ button in this website. This project has been so energizing for me. After my kids go down at night, often my brain wants to dwell on all the what if's that lie ahead for us. I realize through this I have no control over whether Teagan's cancer comes back (though I believe it won't), but I also realize this project is something I can have some control over. It is a dream of mine, that I can create something positive out the immense amount of suffering that exists within my family and for other parents whose children have cancer.