For the better part of the last 10 years my goal was to open a pediatric hospice and grief counseling program in my area. There is something really incredible about working with death and dying, as well as grief and bereavement. It is a sacred time in our lives, much like birth, where we labor between one stage of life and the next. Because most hospice programs serve only adult patients, children and families of terminally ill children, often spend their last weeks or months within the confines of a hospital, where their symptoms can be managed, but quality of life is restricted. I've worked with the siblings of adults and children who have died and have always been struck by how well children handle death, it's really us adults that muck it up. My idea was to create a program that could serve children in their own homes, or within a home-like setting, where family could stay together. The program would also foster relationships between families and children, empowering them to support one another and realize that this process could be one filled with love and hope.
Then my son was born. I worked full time and missed a lot of his first 3 years, seeing him only an hour a night during the work week. And while I still held the idea of a pediatric hospice program close, I really just wanted to spend time with my son. Ever chance I had I would take him to parks, museums, and the library. Watching him learn and develop gave me the same sense of awe and authenticity that sitting vigil did (I realize that sounds odd, but its true). In both instances I am a companion on another person's journey, watching with wonder and pride a beautiful process unfold.
So, how can I spend time in that space with my son and facilitate it for others? By developing a children's museum/discovery center. And with my background in counseling and working with children and families, as well as my experiences with my own son, I have the unique opportunity to tailor the center to meet a need: social emotional development. In my work with children and families, this is often the area that has the most room for growth, and meets the most challenges.
That brings us to now. My research simulation this term will focus on how a children's museum/discovery center can best support social emotional development in children. The greatest insight I've gained so far is that there is little research on this specific topic. However, I'm not new to research, and have often had to dig deeply and get creative in order to answer a question. I'm excited to use this opportunity to support my professional goals. I'm open to insights from others, and am glad to support them in their journey's as well.
Sarah, your blog really touched me because you are so strong and not just being their for those children and parents but for taking time away from your own family. I believe you have a kind heart and I believe that your idea of the museum discovery center would be something nice for the children and families. Although you said it may be the adults who need the most support with death, I believe that shouldn't be the focus of your center. Although these children and some adults have illness that cannot be cured, I think their minds should be taken away from the pain and sadness. I would love if it were my child because I have a child who was born premature, one pound seven ounces, was in the NICU for six months and continues to have difficulty. But if there was ever a time where the doctors told me devastating news such as death, I would not want her to know, I would want her to play the rest of her days. It might jut be me or my motherly instincts but no child should ever have to hear the words "you are dying". I say keep their minds off the sadness and give them a happy playful last memory. As for the parents they might need the support because nothing is worse than losing your child. If you were to open the center, I would say bring your son along, so that you get to spend more time and you can work with him.
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