BY COURAGEOUS PARENTS NETWORK

July is when newly minted doctors begin their residency journey at academic teaching hospitals. Now that they are two months in to their new roles, Courageous Parents Network would like them to know the following. This letter is inspired by one that CPN mom Barb Swoyer wrote several years ago, to which we have added kernels of wisdom gathered from other CPN parents. We have sent it this week in an email to nearly 900 medical providers in the CPN database.

If you have things you would like to add to this letter, please send along to us via connect@courageousparentsnetwork.org and we will hold on to them to share in future communications.

DEAR NEW RESIDENTS

We are parents of children living and struggling with serious illness. Many of us have spent a lot of time with our children in the hospital. Here are a few things we would like to share with you as you begin your own journey as residents.

For starters: Please be assured that we see and feel the pressure on you. Please know we feel pressure too.

We feel observed by you and worry about being judged by you, which makes us feel vulnerable. We are conscious of how we present ourselves. We want you to like us. Sometimes we are hesitant to ask questions or raise concerns. because we don’t want to jeopardize the relationship we are trying to build with you. It is so important that you help us feel comfortable asking our questions. We want to feel like equal members of the care team. By default, we feel at a disadvantage and feel somewhat “smaller” than you. We especially feel this when we seem disheveled–and this is often because we have not eaten, slept or showered.

We are desperate for information. We plan our entire day around when you might come by. It’s that important to us to be there and be present.

We deeply respect your academic and clinical knowledge. Please, in turn, respect our parenting knowledge. Please listen to what we’re telling you. Trust our feedback, observation and opinion.

You study this. We live it.

We hear everything and read our child’s chart when we can. When we can’t hear what you are saying on rounds, we watch, trying to interpret body language. There is nothing worse than feeling left out of the discussion about your own child. The smallest personal comment or gesture can make a big difference.

If you don’t know or don’t have an answer, or if you have bad news, be honest. We don’t expect you to know everything, and we trust humility. When there is trust, we are more able to handle what you have to tell us.

You can also show us that you are human, with emotions. It may surprise you to hear that it helps us to know that you are affected by our child, our family. Knowing that our experience is having an impact on you helps us feel like we are members of the same team.

Any one nurse can make our stay that much better or worse. They truly make the most difference, because they are our one constant. The attending is also vitally important to us, because they make the final decisions. If we know or are known to the attending, it is a huge advantage.

You can make a positive difference if you help to create those important connections.

But also know that, much as we need the nurses and the attendings, we appreciate new eyes on our child. If you have or take the time to engage with us, we will not forget it.

Again: We recognize the relentless pressure of the job you are doing and what is at stake. We suppose and suspect that you feel a similar sense of stress and fatigue to ours – just for different reasons. We have the deepest feeling that we can do this, when we do it together.