Advocate like a Mother

Doctors are not infallible and they’ll be the first people to acknowledge that fact, but so many of us treat them like they have it all figured out and it is often at the expense of our health that we do so.


Since my son was born with an incredibly rare Congenital Heart Defect, I’ve been on the frontline of this reality with a host of specialists who are all busy and difficult to schedule or get in touch with. The simple fact of the matter is, as Americans, our healthcare system exerts a certain amount of force, often compelling parents and children to wait excessively long periods of time before they can be properly diagnosed and treated.


Here’s a recent example: I needed to get Liam in to see a particular specialist and we get the referral almost same day, but two weeks after the referral, we have received no call to schedule the appointment. So, I call and learn they are back logged 6 months and the nurse clinician who determines which kid sees which specialist is on PTO until next week with no one to fill in. Good luck floating to the top of that deluge.


As a parent of a medically complex kiddo, this scenario feels like just another predictable hurdle to wait out. My go-to has been, “they’re busy and they’ll get to us when they can,” but that mentality also allows the full force of the system to slow any forward motion down to a crawl. It might be weeks before the scheduler gets to us and then our appointment is in December or later. Sometimes a back log is no big deal- the need isn’t urgent, but when it is urgent, is waiting the right call?


Patience is a virtue, but doggedness gets shit done.


What if, as parents, we realize we have the ability to exert our own force? We are capable, smart people who have a kid in need and we won’t be lulled into stagnation because a multi-million dollar hospital doesn’t employ 2 nurse clinicians in the specialty office. With just a little extra energy (sometimes a lot of emailing and phone calls), we can push against the system just enough to get things done in a way that benefits our kids. It’s not selfish or pushy, it’s advocating. It’s uncomfortable for most people, but it is effective when done correctly.


It starts with vocalizing what you’re thinking when people on the phone are telling you all the reasons they can’t possibly get to you right now: “That is not acceptable.” That one sentence throws people in scheduling departments for a loop. Once you say those normal words in that magical order, they go into all the reasons it can’t be helped and that’s where you pay attention because when they are giving you obstacles, it’s your turn to start figuring out how to overcome them. In our case, the nurse clinician was out and besides, they weren’t even sure which team we should see. I can’t bring the nurse clinician back from the beach or rig her computer so our son’s file comes up first when she gets back, but I can start asking the other team to weigh in. In our case, we were able to get their opinion noted before the nurse clinician could even catch up on her email. We bypassed the backlog by using the offhanded info we were given on why it couldn’t be done to get it done. When I called the scheduler the next time, there was no excuse why we couldn’t be scheduled. #Momwin *


Advocating well is being persistent and it’s being thorough. People will remember your name, but it doesn’t have to be in a negative way. The best advocate is the one who knows how to find the right person to talk to by remaining undaunted by the layers of bureaucracy and dead ends. And when you find the right person, it’s about convincing them they are your life-line, your last hope. It worked for Princess Leia and can work for us parents, too.


Advocacy is not yelling or threatening. That would be like verbally swinging a sledgehammer at everyone’s face. Even if yelling feels good at the time, it often has the opposite effect of your intentions and no one wins, especially your child who needs everyone pulling the same rope in the same direction.


There is a term called “social physics” which largely studies metadata and crowd behavior, but I think would be just as accurate to describe this push and pull when it comes to advocating. The pressure to be nice and demure around physicians has never served the individual who needs help right away, it just continues to support a status quo that doesn’t benefit anyone, including the hospitals and medical centers who think the way they do things is working. When we take it lying down, there is no reason for a hospital or specialist’s office to change their process- no one is telling them their system is failing while our kids wait and wait and wait for that doctor to tell us what we already suspected but needed a professional to confirm. But, if we all start advocating for our kids, we aren’t just one voice, we become legion. We stop just advocating for our kid and we become advocates for all our children and that is a pressure that no medical center can stand against forever.

*I see you, Dads- everyday you are fighting alongside your spouses or taking the lead. You’re watching your child(ren) while Mom writes yet another email or takes another phone call or you’re making those in-roads yourself. Whatever your role, it is helpful and I thank you and so does your spouse, even if sometimes she’s too tired to say it out loud.