First, something about Courageous Parents Network. We are a Boston-based nonprofit providing a free, 24/7 online destination for families and providers caring for children with complex medical issues. All of our member families would say that their children have special needs. Many, but not all, of our families are coping with life-limiting conditions.
Mine was one of those families. We survived, and I would even say that we ultimately thrived. In the process, and through the years that followed, we learned invaluable lessons. These lessons are being expanded upon, and enhanced, by the perspectives of others through the Network: families whose children have chronic, special needs--and families whose children have no diagnosis at all.
You may ask, why “courageous”? I have yet to find a mother, father, stepparent or grandparent who thinks of him or herself that way. In fact, few of us think of ourselves at all. Actually, the root of the word courage is cor,the Latin term for heart. The poet David Whyte said it so well:
“To be courageous is not necessarily to go anywhere or do anything except to … live through the unending vulnerabilities of those consequences. Courage is what love looks like when tested by the simple everyday necessities of being alive. [For Parents especially]: No glamour in the outward show, deserving of no medal, but on the inside a heartfelt, robustly vulnerable and courageous realigning of one’s life with another.”
This was certainly true for my husband and me 18 years ago, as we accompanied our beloved Cameron. Three key contributors to our ability to keep it together in this exceptional case emerged. We had counseling. We had outstanding care from a pediatric palliative care physician. And, we had the experience of another family of a seriously ill child to guide us.
Did this “normalize” us? Absolutely not. But listening to the intimate bits and pieces others shared about navigating the parenting journey gave us confidence, and hope. And as we in turn began to share our story with other families, I felt how affirming it was for me and also the possibility of building that confidence and hope in others. My story, delivered from the heart, gave others courage. There is so much value in that. This is what parents do for each other.
Earlier this year (2018), CPN conducted a survey of more than 60 Network families. They told us, with remarkable consistency, that their priorities were:
Advocating and decision-making are obviously front and center of this parenting experience. The fourth priority, though, is one that warrants more attention. Early in the history of the Network, a pediatric palliative care physician told me that, “… As providers, we always worry about the siblings and what their experience is and how they might need help.” If giving their other children support is among parents’ highest priorities, it is also among their biggest challenges.
Many excellent articles have been written about effective parenting for siblings. Always eager to cut to the chase, we asked families and pediatric providers to share what they had learned, their favorite “real-world” advice. Included with their tips are some quotes from siblings, parents and providers in the Courageous Parents Network.
Consider the other children, right from the beginning. It’s important to immediately figure out both the practical and emotional aspects of tending to the siblings.“The minute one child gets diagnosed, all the focus, attention and learning ends up on that child … siblings report over and over again, even though they completely understand it was not intentional in any way, that they actually felt neglected and sometimes they felt almost abandoned.” – Child psychologist
Model coping behavior. Having a hard day? Simply say so, and let siblings see you ask for help and accept support from others. This will make space for them to express their own feelings, and reach out for what they need. “I tried to hide sad stuff from her in the past and she spoke to me about how important it was to know the sad stuff too, because it is reality. We talk about how scary it is that we don't know what tomorrow will be like and we know that as long as we're doing the best we can and making sure that we're happy then you know that's what life is for.” – A mom
Encourage asking and sharing. Don’t answer questions the sibling doesn’t ask, but also understand that a sibling’s instinct may be to keep their feelings to themselves so as not to burden you. Experts caution against giving too much information, or too little. But never dumb the conversation down. “Her questions were great, they always came from a point of love… she did a remarkable job for a girl of her age to process what she didn’t want to hear initially, and to gradually understand the reasons behind [our decisions for her brother].”– A mom
Have your radar out for what the children enjoy. Some children will want to help, or participate in their siblings’ care. Some will do anything possible to avoid the caregivers, medical equipment, and even their sibling. Don’t force anything—but do get help in ensuring that your other children feel understood. We particularly recommend the services of child life specialists to assess. “When I’m working with siblings I am helping them find the space to find out who they are and what it means to be the sibling…I am helping them to be a kid.”-- Child-life specialist
Be connected to others. You and your children are far from alone on this path, and many who have experienced it have taken time to share their stories. You can find videos, podcasts, blog posts, guides and other materials created by families, for families, on the Courageous Parents Network website.“I have six words: You. And. Me. Are. Not. Alone.”– A brother speaking to other children (via video)
And, finally: tell your story, and help the siblings tell theirs. The Courageous Parents Network story is the story of storytelling. We consistently observe that parents, siblings and extended family make better sense of their journey and their feelings as they work through their own narrative. It is therapeutic, synthetic, and empowering. Family time, journaling, support groups, even advocacy: you can do as much or as little as you want, publicly or in private. “There is so much that you can gain and learn, and so much that you and your sibling can contribute in the world.”– A sister on what she has learned