Two years ago, I gave birth to beautiful twin daughters, Julia and Leah. My husband Rob and I brought these two tiny miracles home from the hospital to meet their two-year-old brother, James, and begin their life journey.
What we soon discovered was that Julia’s journey was going to be extremely short. She wasn’t eating and began having seizures. When she was just four days old, doctors at Boston Children’s Hospital determined that Julia had suffered a severe brain hemorrhage and would not live long. It could be a day, a month, or sometime in between the two.
We met with a child life specialist and an end-of-life team at Children’s. Rob and I wanted Julia to be at home and comfortable, not hooked up with tubes in the hospital. The team explained that we could have hospice care for Julia at home, which relieved many of our concerns, but we weren’t sure how that would work or what to expect.
A few hours after we took Julia home, a Care Dimensions hospice nurse arrived. She was so kind and respectful. She, along with the other Care Dimensions nurses asked, “What are your concerns?”, heard us out, and helped us develop a tailored plan to care for Julia.
We wanted Julia to experience as much of life as she possibly could. We did not want her to be sedated with too much medicine, but at the same time, we wanted her to be comfortable. The Care Dimensions nurses took the time to understand us and helped us find the balance we desired for our daughter.
It was also very important to us for Julia to live out her days naturally and go as God had planned for her. We wanted to give her our love and the best possible care. We wanted to feed her if she was hungry, give her comfort if she was in pain and understand whatever else she might have needed. The Care Dimensions nurses helped us interpret her needs so that we could provide that care we so deeply desired to give.
They also reminded us that we could always call the nursing support line, which helped ease our minds.
We also experienced some unexpected “extras” from the Care Dimensions team. Chaplain Donna came to our house and spent time with the whole family. She prayed with us, opened her heart and told stories, and cradled Julia in her arms and sang to her. This was such a beautiful experience that we will never forget. It was like having another family member there who understood exactly what we needed in that moment.
Julia wasn’t eating and her body was extremely fragile. We were worried that it was becoming uncomfortable for her to sleep in her bassinet. Our nurse Jessica took the time to look for a special pillow for her. She reached out to the clinical manager, Pattie, who located some pediatric gel pillows at a hospital and ensured that we had them at our next visit. Kind and thoughtful acts like this seemed to come naturally to everyone on Julia’s hospice team.
Having the nurses come and check on Julia at home helped prepare us as she got closer to the end.
When one nurse said, “She’ll probably go soon,” it helped us understand death was coming. Rob was holding Julia when she passed, and it was peaceful.
I wanted to do something to honor Julia’s memory each year, but one year after her passing, I wasn’t ready. This year is different. When I received a Care Dimensions email about the 35th Annual Walk for Hospice happening October 2, I knew what to do. I registered for the Walk, formed the team, Julia Rose, and began raising money. I was excited to do something positive.
We expect to have 20-30 people join us at St. John’s Prep for the Walk for Hospice, including family, friends from where we grew up, and new friends we’ve made in Topsfield.
We are so grateful to Care Dimensions for the medical, emotional, and spiritual support that we received during an extremely difficult time in our lives. Everyone who came through our door was compassionate, nurturing, and truly sent from God to help us care for Julia and help her to live out her last days with great dignity and love. We look forward to honoring Julia and celebrating her on October 2nd, and we hope you will join us by registering for or donating to the Walk for Hospice.
About the author
Laura Kirkpatrick resides in Topsfield, MA, with her husband, Rob, son, James, and daughter, Leah. She feels grateful for the opportunity to share her story and the grace that her family received during Julia’s short life.
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Since 1978, Care Dimensions, formerly Hospice of the North Shore, has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in over 100 communities in Massachusetts.