support guidE
for
parenting a medically-complicated child
Hello my dear,
We often have very romantic expectations about parenthood. Parenthood is about a mythical child who will be perfect in a way we haven’t quite put our finger on. But what if we are not the parents we thought we’d be? Or our kids are not the kids we thought we’d have?
Love is unlimited, but we are not. So, let me just say this directly: If you are tired, if you have reached your limit, if you struggle to find resources to support the people in your life—I just want to say, bless you. You are allowed to be tired. This is harder than you imagined. No one seems to understand. If you are still looking for your community, bless you.
Below you’ll find a small care package we put together to love, support, and encourage you. We may not find every joy in the limitations we are stuck inside. But our gorgeous fragility is nothing to be ashamed of. We hope these resources will be of some comfort to you as you take yourself off the hook for not being magically better somehow.
Bless you,
Kate
a blessing
for our
interdependence
Inspired by my conversation
with Cammie McGovern
Blessed, are you who realize you can’t go it alone.
You who are learning that dependance is not something to be ashamed of.
That your needs do not make you weak.
It is just what it means to be human.
Blessed are we who create and live in communities that cost us something.
Inefficiency, our dignity, our time.
May these bring wider and wider rings of belonging that reach beyond ourselves.
Because thank god, we are a group project.
Be the first to know when we release a new resource like this one.
Watch
The Pressure to Be Inspirational
A reader who was in the middle of parenting a medically-complex child, wrote in and said, “I’m everyone’s inspiration, but nobodies’ friend.”
READ
Raising a Rare Girl
by Heather Lanier
This memoir about embracing parenthood as a spiritual practice that breaks us open in the best of ways.
READ
Far From the Tree
by Andrew Solomon
A beautiful book featuring stories of parents who not only learn to deal with their
exceptional children, but also find profound meaning in doing so.
WATCH
Heather Lanier’s TED talk:
“Good” and “bad” are incomplete stories we tell ourselves
How do I parent a teen with a chronic health condition?
From psychologist Lisa Damour’s podcast, Ask Lisa.
Articles & Other Resources:
Courageous Parents Network
Courageous Parents Network is a non-profit organization that orients and empowers parents and others caring for children with serious illness, by providing resources (videos, podcasts, and printable guides) and tools that reflect the experience and perspective of other families and clinicians.
ARTICLE
Sarah Wildman: a staff editor and writer for the New York Times. She is the author of “Paper Love: Searching for the Girl My Grandfather Left Behind.”
“In these years as cancer caregivers, we have often been told how brave we all are. I always find the sentiment lovely but misplaced. Bravery implies some agency in the matter. And what choice do we have? We have spent the last 38 months putting one foot in front of the other.”
LISTEN
Heather Lanier: Whole and Holy
For the reminder we are not summed up on bell curves. Perhaps the exact bodies in which we dwell are whole enough
LISTEN
Wajahat Ali: Make Me a Gardener
About parenting amid fear, unexpected kindness, and how kids really are our greatest act of hope
LISTEN
Andrew Solomon: The Stories of Who We Are
About what it’s like to be different from our family, find our people, and love our kids across differences
LISTEN
Jayson Greene:
The Language of Grief
About how to stay open to love in the face of fear, especially as parents
LISTEN
Cammie McGovern:
Mythbusting Parenting
About how the role of every parent is to discover their kid for the mystery and wonder they are and how to build inclusive communities
LISTEN
Mary Laura Philpott:
Everybody Has Something
About why remembering that “everyone has something” can make us feel less alone
CONSIDER THIS
If you are parenting kids with medical complications, consider this:
1. Consider taking the next few moments to check-in with yourself. What are you feeling? I know it is hard to prioritize yourself in the face of the never-ending to-do list, needs of your children, or doctor’s appointments. Consider taking this moment to ask yourself what do I need right now and a week from now?
2. What you have to do and face every day is so hard and so beautiful. Your child is perfect and good. Your child has human needs that sometimes needs extra steps, medicine, help, and patience. As a parent you don’t have to be the superhero, the specialist, or the perfect caregiver. Your child just needs you to be present and to help discover the mystery and wonder that they are. Consider taking a moment to sit back in awe and wonder of this perfect and good child.
3. Ask for help and be specific! The saying “It takes a village” is more true than ever in our world and yet our society doesn’t do a great job of caring and nurturing the parents and caregivers. We are sorry and there are many people in the world who want to help.. They just don’t always know how or what. Can you be specific and tell us how we can help you? Do you need doordash gift cards? Or a home cooked meal? Do you need us to take your kids for just an hour so you can go to the grocery store by yourself? Do you need us to ask or NOT ask how the doctor’s appointment went? We won’t be offended if you just tell us what you need and how we can feed into you the parent and caretaker. Consider what you need and how we can help, we want to help.
