Updated: May 9, 2020
Our family has spent an unbelievable amount of time in waiting rooms, clinics, and hospitals. In nearly every case, we have received truly excellent, highly professional care for our child(ren). But nothing this side of heaven is perfect, and if you spend enough time doing the same thing over and over, you’re bound to run into an off day. Let me share an example from a time when our son's care fell during our local ER's perfect storm of an off-day.
Oscar had been sick with vomiting for several days. He is on a special diet where dehydration and fasting create additional dangers, more than most kids would face, because his body chemistry gets out of whack very quickly. Which it did. Which no one realized until it was almost too late.
I spent several hours in the ER demanding attention that was very slow in coming. After our son was admitted and endured a rough night of more testing and procedures, I had many boring hours alone in a hospital room with him to deconstruct all the ways the week, and especially the ER visit, had gone horribly wrong.
Anyone who knows me well will tell you I have a great deal of confidence in my own intellect and a teensy bit of a temper; pride and anger are the two sins I perennially confess. And anyone who cares for a child with special needs knows that parents absolutely have to speak up and advocate for that child and his needs. Without pride. Without anger. This begs the sticky question: how can we do both?
How can we cultivate the virtues of charity and humility, even in the midst of a moment where a child’s life might literally be at stake?
During a crisis, there is a place for righteous anger. Jesus flipped the tables in the temple to get people’s attention and alert them to the Great Wrongness of the situation. One may, on rare occasions, actually have to do some table flipping in order to be heard. I did not go out of my way to waste time on pleasantries or be especially polite when I asked our nurse — for the third time — for something my son desperately needed RIGHT THEN (or really, three hours ago) that night in the ER.
Sometimes, though, the greatest dangers to charity and humility come after the moment of crisis. During our prolonged inpatient stay this week, I have had plenty of time to ruminate, feed that righteous anger, and twist it into something else. Something uglier. Something that has led me to use the Lord’s name in vain, harbor resentment, and gossip and complain about who didn’t do what and who should have said what to so-and-so and who missed a crucial detail in a crucial moment.
Out of all that exhausting anger and all those recriminations, though, came some valuable things. With a little more distance and a little cooler head, I was able to sort through the wreckage and figure out what needed to be addressed, and what needed to be let go. And it didn’t take very much distance; I was on the phone with hospital and clinic administrators within 12 hours, and I wrote painfully detailed letters within 2 days of the problems that occurred.
It was vitally important that I say those things, because we ended up needing to use that same ER a second time in the same week, and those mistakes were not repeated. It was also vitally important that I not say all the things that were in my head in the heat of the moment. (I mean, I said a lot of them, but not all, and not all directly to the people I was angriest at.) I came dangerously near to burning a lot of bridges that I ended up needing to cross again a few short days later.
In many ways, the care team for a special needs child is like a family: you don’t always choose them, and you’re kind of stuck with them, often for a long, long time. Sometimes your only choice is the one specialist in town, the one hospital in your network. Even where there is more than one choice, the opportunity cost of switching to a new care provider is extremely high when your child’s medical history is complex.
Fraternal correction is an art, not a science. It’s a hard enough thing to do between equals. It’s even more fraught when you are offering critical feedback to someone with more power than you. (Doctors have also been known to suffer from the sin of pride. Ahem.) Doctors have superior knowledge of the science of bodies; parents have superior knowledge of the everyday reality of this particular body, and of the soul that lives in it. Pointing out a doctor’s error, or even offering a different take on a murky issue, can be an uncomfortable thing to do during a friendly, unemotional office checkup.
But offering correction charitably, humbly, and firmly, when someone or something has caused hurt to your precious child? Well, that’s just one more path to holiness that special needs parents get to walk more frequently than most.
Here are several battle-tested tips, refined extensively in the last week, to help you stand up for your child, without endangering your relationship with his doctors… or your soul.
Prioritize. Decide what must be said, and what can be endured. In our ER debacle, my first draft of the written complaint inluded the kitchen sink… and the sofa. I rewrote and reorganized it to outline the most egregious errors. These were the things that were absolutely unacceptable. If you didn’t say anything and it happened to someone else, could you live with yourself? If the answer is no, include it in the conversation. But remember: you are more likely to be heard (and perceived as rational) if you sharpen the focus down to the most crucial issues.
Be precise. Once you’ve pared down your list, explain the items on that list in as much detail as possible. This helps your care team to understand two things: (1) where the mistake actually happened, and (2) whether you are actually communicating about the same thing. Two different people can observe the same interaction and come away with wildly different impressions of what happened.
Be honest. Be scrupulously, meticulously honest. In our case, this time, it meant acknowledging that there were things we could have done differently at home that might have kept us out of the ER in the first place. It also meant acknowledging that this same hospital has cared for our son quite capably in the past, as well as discerning the difference between everyday human error and deeper systemic problems. I even tried to get several third-party takes, to gauge whether my reaction was out of proportion. No ad hominem attacks. No blaming for things outside anyone’s control. For heaven’s sake, no unseemly name calling. Only the truth, spoken (or written) with as much charity as possible.
Be fair. Remember your medical team is made up of regular people who are (usually) trying to do their best. If you expect them to hear out your side, you owe them the same courtesy. Humbly consider the possibility that you might have it wrong, or that there might not be a wrong. With complex kids, lots of grey areas exist. Trust that you are all trying to help your child achieve the best possible health and life. (If you don’t trust your child’s doctor on that, it’s time to find a new one.)
Most of the tips above apply to post-mortem conversations, when cooler heads can prevail. In the heat of the moment, I have only a few words to offer:
Speak up, with charity.
A crisis situation is not the time to beat around the bush, or wonder about priorities. If you’re worried, say it. Say it again if you must, and then again, until you are heard. (Table flipping is optional.)
Charity doesn’t mean you have to be “nice.” It means you approach the tough conversations selflessly and sacrificially, loving with God’s love. You can’t offer charitable feedback if you are taking things personally or unwilling to consider that you might be missing something. Charity persists in speaking the truth you know about your child, and speaking that truth to power firmly and consistently, even urgently in the face of danger. Charity demands that you do so without demeaning or insulting the people you’re working with; they may still be the ones to greet your child next time.
You don’t have to like them. You don’t have to agree with them. You especially don’t have to let them do whatever they want.
But you DO have to remember that they are also sons and daughters of God, just like you, just like your child.