In this oversized volume, author Josie Murrell tells the courageous story of the challenges, heartbreaks and joys of parenting her daughter, born with a rare and debilitating condition.
Humans have 23 pairs of chromosomes (46 total), but sometimes an individual will have an extra chromosome called a trisomy. Down syndrome is a common form of the trisomy condition, but more rare forms exist. When Murrell’s daughter Melissa was born, she was approximately one in 6,000 live births with Trisomy 18, also called Edwards Syndrome. While many such babies die in utero or shortly after birth, Melissa lived to the rare age of nine with the support, love, and determination of Murrell, their family, friends and healthcare workers.
New Zealander Murrell was already a mother to five children when Melissa was born. In this intimate narrative in which the author often addresses Melissa directly (“Your first birthday was a very special occasion…”; “…you were our little miracle”) and includes various caregiver reports, she details the daily heartache, sleeplessness and fear that, while challenging, ultimately made her stronger. Digestive tract abnormalities made feeding Melissa a daily struggle, as did her severe heat and light sensitivity, diapering and sleeping issues. Working with the often-difficult healthcare system to receive benefits, plus finding and training caregivers, were ongoing challenges.
A rainbow theme is carried through the narrative, from the expectant mother wallpapering a bedroom with a rainbow design, to the final, heartbreaking image of a rainbow appearing through clouds at Melissa’s burial.
This is a conversational recollection of personal and clinical events. While often heart-rending and poignant, it is written straightforwardly, with little artistry. Thus, it isn’t likely to appeal to general readers. However, family and friends will certainly want to learn more about Melissa and her mother’s journey. And the author’s strong faith and commitment to her daughter could serve to inform and encourage others facing similar health challenges for a loved one with severe disabilities.
Also available in hardcover and ebook.