By Margaret Storey, member of Lurie Children’s Family Advisory Board
Margaret reflects on the powerful partnerships she and her husband have formed with their daughter’s medical team over the years and how these relationships have helped them navigate the complex medical world.
When my daughter was first diagnosed with a serious epilepsy syndrome at three months old, I understood that our family’s world had changed dramatically. What I didn’t appreciate—at all—was the fact that her illness would mean that her father and I would suddenly have a whole new set of relationships with doctors (and nurses and therapists).
And these were no ordinary relationships. Our partnerships with her medical team were essential, even life-saving, collaborations, as important to our daughter and to us as any we had ever cultivated.
Now, 13 years later, I look back at the parents we were then and can see, very clearly, the ways that positive relationships with our daughter’s medical team not only benefited her, but helped us cope with very trying circumstances.
At first, we—like all parents—wanted and expected our daughter’s doctors to cure her. We simply did not fully understand the implications of her disorder, and in some ways, time was the telling factor.
But as it became clear that her illness would be very difficult to control, and that she would have disabilities as a consequence, both we and the doctors faced a new challenge. When there are no simple, clear answers—when the known protocols don’t help—how do you work together to care for a child in a way that protects her and allows her to live the fullest, most healthy and happy life possible?
Our most successful partnerships were facilitated by doctors, nurses, and therapists who could effectively navigate that shift. They felt comfortable guiding us through unknown terrain, even if they were themselves unsure of the outcomes. They didn’t balk in the face of that uncertainty, but embraced the challenge of striking out with us on a journey whose destination was unclear and that would necessarily include heartache as well as joy.
I think, too, that one of the keys to success was a willingness, on all of our parts, to learn from one another. Our medical teams showed this willingness through their respect for our daughter’s dignity and person-hood, unfailing encouragement of our questions and insights, and sincere trust in our ability to understand and explain our daughter’s needs.
On the other hand, we came to respect what it takes to be patient, to observe and not panic, to tell the difference between the urgent and the “new normal.” And what we learned from our daughters’ doctors allowed us to grow more independent over time. We lean on her doctors less now than we did when she was little. This is partly a result of some stabilization of her health condition, but it’s also a result of stabilization in our needs, as parents. We have grown more confident in, and more competent at, navigating the complex medical world that was so very foreign to us when she was a baby. That confidence is a direct outgrowth of supportive partnerships with her medical team.