Limbo Rana K. - Handbook of Perinatal and Neonatal Palliative Care

xxiii About the art and Artists

Frontispiece: Wyatt Wolfgang Kelso, born on April 3, 2015 and died on April 4, 2015, inspired his parents to create an outdoor memorial service along the northern shore of their favorite pond in the Lower Hudson Valley. The service included the planting of this tree, a sycamore, which they fondly refer to as Wyatts Tree. This painting, Mandys first portrait of the sycamore after Wyatt died, hangs in Robbie and Mandys home as an artful reminder of their dear son. Their story, which includes 12 miscarriages before and between Wyatts death and the birth of his sister Reilly Violet in 2018, always included hope. The beautiful sycamore, as it cycles through the four seasons, is a reminder of how tragedy can be so closely intertwined with joy and better days to come. Copyright 2015 by Mandy Kelso. mandykelso.com.

: The image featured in section I was provided by Maureen and Dennis Pronschinske. Their daughter Eden lived for 11 days. During her short life, Eden was almost always in someones arms. In this photograph, she is being held and read to by her cousins and sister. The accompanying text is an excerpt from the poem Our Lives written by Mandy Kelso and featured in her book Poems for Wyatt: An Archive of Infant Loss and Recurrent Pregnancy Loss (p. 11).

: The image featured in Section II was created and provided by Mandy Kelso. It is a detail from her encaustic painting entitled Calamity, which features gold leaf and burled maple on a wood panel. The accompanying poem, Home Today, was written by Mandy and is featured in her book Poems for Wyatt: An Archive of Infant Loss and Recurrent Pregnancy Loss (p. 18).

: The image featured in Section III was provided by Maureen and Dennis Pronschinske. In the image, Dennis holds their daughter Eden, and Maureen holds their son Rhett. It was a cold and snowy February, and they were discussing their farm after eating lunch. For this family, the image depicts the balancing act of living day to day while dealing with the knowledge of the upcoming death of their child. Eden lived for 11 days. The accompanying text is an excerpt from the poem Your Name written by Mandy Kelso and featured in her book Poems for Wyatt: An Archive of Infant Loss and Recurrent Pregnancy Loss (p. 27).

: The image featured in Section IV was created and provided by Mandy Kelso. It is a detail from her encaustic painting entitled Catastrophe, which features gold leaf and burled maple on a wood panel. The accompanying text is a quote from the article xxiv Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant, written by Kavanaugh, Roscigno, Swanson, Savage, Kimura, and Kilpatrick (p. 152).

: The image featured in Section V was created and provided by Mandy Kelso. It is entitled Wyatts Spring. The painting depicts the cherry willow blooming in the Kelsos front yard as they came home from the hospital without their son Wyatt shortly after his birth. Wyatt was born April 3 and died April 4. The accompanying text is an excerpt from Mandys poem By the Stone, which is featured in her book Poems for Wyatt: An Archive of Infant Loss and Recurrent Pregnancy Loss (p. 49).

All images and poetry featured in this book are used with permission.

xxi Acknowledgments

We thank each of the authors who brought their expertise to the content of this handbook. For some, this was an early professional writing experience. For others, this chapter is one of several hundred contributions to the professional literature for colleagues in this field. We know that each of you spent considerable time creating a chapter that was unique, clinically relevant, and emphasized the critical nature of the relationship between care providers and the families they care for. As Dr. Carter noted in his dedication, these relationships showed we have all lived and learned together. Our dream as editors is that the handbook will continue this sacred process.

The work of Gundersen Medical Foundations senior writer and editor, Cathy Fischer, MA, ELS, was incomparable. Her knowledge and expertise supported the collaborative effort the editors envisioned among readers, writers, and editors. Our goal was to create a book that would inspire its readers to, above all, be in relationship with those cared for, to understand the other, to focus on inclusivity, and to appreciate the values that provide the foundation for human caring. Cathy was a key part of the relationships that served as an underpinning for this text.

We are grateful for the support of Resolve Through Sharing staff member, Melissa Koch, who helped bring together the graphics used in this book. Thank you to the departments director, Mary Beth Hensel, MBA, for introducing us to the paintings and poetry of Wyatts mother, Mandy Kelso. Her artistry complements the book authors words, reflecting the multi-faceted world of perinatal and neonatal palliative care. xxii

Appendix

NATIONAL PALLIATIVE CARE ORGANIZATIONS AND RESOURCES