If this blog seems a bit off the topic of photography, please bear with me and you will see why it applies.
I have friends who have a daughter named Krista. Krista is now nine years old and living in Colorado, and her family is coming to visit me this weekend. They are coming because she is having a pulmonary valve (heart) problem which may, or may not, be immediately correctable, and she must see her doctors in Missouri. Time is of the essence, as it has progressed much faster than what is considered normal, and we should know this weekend if her problem requires immediate surgery. If it does, their stay will be a longer one.
Krista is a remarkable young lady in that she contracted cancer when she was two. Cancer is something that a two year old cannot comprehend (let alone most adults); she only knew that something was wrong and that she was “sick.”
Krista is different in that she has not had the same kind of childhood that other children have. She is limited by a tiredness that may never go away. Her treatment, you see, required chemotherapy, and chemotherapy always ravages your system. She has learned to live within her limitations, and because she has never known anything else, this is “normal” for her.
When she was ill, she was treated at Children’s Mercy Hospitals in Kansas City, remarkable places that give families hope for the future. There is no doubt in my mind that Krista would be dead had it not been for the Children’s Mercy medical team and staff. They are an amazing bunch of people who care about their patients and do not treat merely a disease or disorder, but a little (and sometimes not so little) person.
Krista is not related to me by blood, but I love her anyway, and I never cease to be moved by how she lives her life without much thought of her illness while the rest of us gripe over trivialities. Her courage and steadfast faith that God will care for her is an inspiration to those who know and love her, and unlike most, she never complains. When she is not feeling well, she tells her Mom and Dad because she knows that they will do for her the best they can. We should all learn a lesson from this little person.
When her Mom called and asked if they could “camp out” while she saw her doctors, I began thinking that I wish someone had documented her life journey. You see, Krista has pictures that her family took during her illness. Most of us would have hidden them in a drawer with hopes that no one would ever discover them. Not Krista. They have become important to her. They are a part of what she is and will become, and they serve as a reminder of what a blessing she is to her family.
But the question that nagged at me the most was, Why do we professional photographers not document more stories like Krista’s? I don’t know. There is, of course, the ever present HIPPA
regulations to blame that on, but parents can decide to grant permission to record the journey their family will walk together. Perhaps the stories are too painful even for those who have seen more than they should.
I realize that this course of action is not right for every family, but this is often the only recollection these children and their families will have of what occurred during their treatment—treatments which tend to be a whirlwind of emotions and confusion and questions. Is it worth it to be able to look back and make some sense of what happened? Each person will have to answer that one individually.
This is not, mind you, about money (nor should any be accepted for this priviledge). It is about the children. It is about the marvelous work done by the hospitals’ medical teams. It is about a race to preserve the life of someone who is precious in the eyes of those who care about them.
Of course, Children’s Mercy is not the only medical facility doing this sort of work, but it is the one which I am most familiar with because I know Krista’s story. I am hoping these hospitals—and others like them—will allow me and other professionals to approach families with the offer to document these journeys that can seem interminably long and arduous. Journeys that will change them forever, but hopefully in positive ways as they treasure the gifts of love and support they receive.
There is a story to be told here, and I and other photographers can tell it in a way that will be unique. Why do I say this? Because I know Krista.
Good shooting to you all!