Blyth Lord: My name is Blyth Lord. I am the founder and executive director of Courageous Parents Network. I founded Courageous Parents Network 13 years after the death of my daughter and my nephew from a genetic illness, a very rare genetic illness called Tay-Sachs Disease that always affects, that is always fatal. We’re still looking for a treatment for Tay-Sachs Disease. And I learned a tremendous amount during my daughter’s life and paying attention to all the ways that we received support and all the different sources of support we found.

Juliette Kayyem: Tell me about the things that you learned through the, both the process of caring for a child who had a fatal disease, as well as the recovery after, if you can call it recovery, and then the building of a resilient family after. What are some of those attributes that people need to hear from people like you?

Blyth Lord:  Well, there are always, when we look at family resilience in the face of serious pediatric illness or illness generally, there are some things that are natural to the family that you can’t really do anything about, such as the individual, the people’s individual temperaments and their, their natural orientation to be “glass half full” or “half empty” people. Then there are the variables such as their socioeconomic well-being and what sort of support system they have because, one, there are financial hardships that come from having a child who’s seriously ill because so much attention needs to be paid and that attention takes time. And inevitably it requires either caregivers or the parent to be the full-time caregiver, which leads to lost, often lost income from at least one of the parents as providers. And then there is the community of support that may or may not be there from family and friends. And then there’s the medical support that a family gets, whether from their team of doctors in, and nurses and social workers in the hospital if that’s where their child is receiving care on or off. And then also what sort of medical support they get at home, because most families do want their children to be cared for at home as much as possible when not in an emergency medical situation. And if you are in a hospital like Boston or like Boston Children’s Hospital or MassGeneral Hospital for Children or one of the major children’s hospital anywhere else in the country, you are going to receive phenomenal care and really you may likely, we hope, receive palliative care. And I would love to get into a little conversation about what pediatric palliative care is. But there are a lot of families whose children are living with serious, serious illness who do not live in these major children, in major urban centers with such resources and those families are much more at risk for a lot of the things that we see because they’re not getting that sort of care.

Juliette Kayyem: So what does resiliency mean to you and a community that you’re helping right now? I mean obviously in the biography you envisioned about your life, this was not part of the plan. You had a professional history in media and a lovely husband and other, you know, a sister-in-law who went through thing and what does, what does resiliency mean to you?

Blyth Lord: Oh, my goodness. I love that question. So resiliency means knowing that you have the capacity to get through something very difficult; to be good and kind to others; to discover strength in yourself that you did not know you had; to help others be strong in the face of a difficult situation; and to emerge in some ways stronger because you’ve been through something and grown. And yes, you’ve healed but in healing you’ve also grown and out of that has come something new. So it, it, resiliency isn’t just about not falling apart, which of course is the most obvious definition of resiliency in, in this instance. But it’s also about emerging with a new sense of what it means to live help others and give back to others who are in your situation now. And in, to the extent that it’s possible, inspire people by your example. And I see families, I see bereaved parents all the time where what they want to do most is show other parents that they can get through. And not only are they helping build resiliency in those other parents, they are, they are becoming and sort of shining forth their own resiliency in doing that. It’s like, “Look! I did it. You can do it, too.” And at the end of the day, they’ll be like, “Wow! I helped a family today. And that makes me feel stronger and it, it helps me feel my child’s presence in my life,” which is, it’s, it’s all of a piece.


>>From more from our conversation with Blyth, please click on the audio link above.