Turning Loss into Advocacy
by Lana Macrum-Craig, Board President
My daughter, Allie Reese, would be celebrating her 9th birthday this month. Each year, as Mother’s Day approaches and soon thereafter, the date of her birth, my heart and mind become a little unsettled. Conflicting emotions of sorrow and pain intertwine with love and gratitude for the gift of being her mom.
Like most expecting mothers, I had dreamed of joyous milestones with Allie and all that motherhood encompasses. But Allie’s early arrival at 26 weeks gestation and subsequent diagnosis of a very rare and terminal genetic disorder quickly dissolved my joy into anguish, as I knew I would only know the physical presence of my daughter for a short time.
Allie lived 18 precious days. During that time my family struggled to navigate our emotions and the complicated and overwhelming reality of the Neonatal Intensive Care Unit (NICU).
I spent years trying to make sense of, and more importantly, sooth my heart around the loss of my child as well as my marriage, which was not able to withstand the weight of such a traumatic loss. Grieving, surviving and healing became my daily routine, and I credit my faith for carrying me through that difficult time.
Thankfully, years later I am now blessed with a loving and supportive husband and two wonderful step-children. Shortly after our marriage I expressed my deep desire to help other families who face the challenges of premature birth, genetic disorders and loss. I prayed for the opportunity to use my greatest pain to help others, and within a short time, I was introduced to Hand to Hold.
Through my service on the Board of Directors and now as presiding President, I have been given a platform and a medium to repurpose my pain into meaningful efforts to truly transform lives of NICU and bereaved families.
Hand to Hold not only provides meaningful and effective programs, but champions true social change in the delivery of Family-Friendly Support. This advocacy helps mitigate many social challenges experienced by NICU and bereaved families including divorce, child abuse and mental health diagnoses, such as depression and PTSD.
Hand to Hold’s comprehensive support model ensures hospitals meet new standards for Psychosocial Support for NICU families. These new guidelines, proposed by the National Perinatal Association in 2015, include peer-to-peer support, support groups, bereavement support, access and referral to mental health professionals and ongoing education to prepare parents to care for their medically fragile child.
Hand to Hold’s programs are transforming lives, which ultimately benefits our communities and economy. This is hard work, and we need your help. My goal as President is to build a diverse and distributed army of people that will help us achieve our mission and build a sustainable model, growth capital and partnerships that will carry us into the next decade.
We are at a critical stage of non-profit development as we grow our local, state and national presence. Please join us on this journey and become a member of our Sustaining Circle of Love. Your support is critical. Studies indicate that the mental, physical and social health of the family is highly correlated to the long-term physical and developmental outcome of the baby. Your support ensures best outcomes for babies and their families.
While I thought I would not be able to bear the loss of my baby, each year graciously lessens my sorrow. I am now able to focus on the legacy of love and hope for better outcomes for other families she has left behind.
Hand to Hold's Sustaining Circle of Love was established to recognize dedicated annual donors who are passionate about advancing the mission of Hand to Hold. Find out more about the Sustaining Circle of Love here or contact Jennifer Hayhurst.
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