Changing the Narrative

June 4, 2024

Why we need to change the narrative

When I got the phone call from the doctor telling me our youngest daughter probably wouldn’t make it to birth alive because of her diagnosis, all kinds of fears flooded my heart and mind. These fears sprang from narratives I had picked up from the world around me: There’s something “wrong” with my baby. My baby might die. My baby might suffer. My baby might be profoundly disabled–and that’s a bad thing.

Fast forward to today: Verity is 7 years old and an absolute joy and blessing to our whole family! Yes, she has an extra chromosome. Yes, she has significant needs. Yes, she is, in fact, disabled. But no longer do I consider that a bad thing. And I know our daughter is not suffering. (She might enjoy life more than most people!) I no longer fear being the mother of a child with special needs. I’m proud of Verity, and I’m proud of her siblings, who have grown the most loving, compassionate hearts because they love their little sister who is “different.”

Our experience has changed the narratives we almost believed when we first heard the words “Edwards syndrome.” And now, through Verity’s Village, we are changing the narrative surrounding genetic anomalies from HEARTACHE to HOPE!

How Verity’s Village is changing the narrative

To do this, we give practical support and resources to our clients. We help parents prepare for a range of possibilities—delivering a stillborn baby; birthing an infant who lives only hours or days; caring for a child who is medically complex and needs significant interventions and support. Knowing the toll this journey takes on the family’s mental and emotional health, our ministry also provides the funding for counselors who are available for group, individual, and couples’ counseling sessions at no cost to our clients.

We invite you to join our mission by sponsoring our 3rd annual Run for the Rare fundraiser with the theme “Changing the Narrative.” The in-person event will be held at Palmer Lake on September 21, 2024. There will be participants all over the USA, since we serve a national community. Tiered sponsorships are available. We would love to partner with you for this event, allowing your business or organization to reach more people while helping us cover our fundraising expenses and reach our funding goal.

Last year’s fundraiser helped us launch a part-time staff position, Parent Care Coordinator. Kathryn Kerr, a NICU nurse and veteran mom of our prenatal support group, has walked alongside clients over the past 9 months giving personal, individualized care to help them process the overwhelming information, formulate questions and talking points with their medical teams, and create a birth plan that honors their wishes and their baby’s life.

Join us in changing the narrative!

Hiring Kathryn has been a great start, but the need is far greater than one part-timer and a few volunteers can keep up with. Currently, we have approximately 550 members in our From Diagnosis to Delivery prenatal support group. Our support group for bereaved parents (From Heartache to Hope) has over 200 members. We MUST bring on more paid and trained staff members so we can better serve these families who bravely choose life for their sweet babies.

With approximately 20 newly diagnosed families coming into our support network every month, the need is urgent!

Will you help us change the narrative surrounding genetic anomalies? Will you support us as we help parents write NEW narratives? Please check out our sponsorship opportunities and consider how you might partner with us!