On Friday afternoon, I call B at work with the good news that C.T. has actually fallen asleep for a nap, something he almost always refuses to do, even when he feels terrible. B pauses. There is a barely noticeable catch in his voice: Are you sure? I need no clarification. I hear the fear, the obvious translation grips me despite the miles between us. Gretch, he might just slip away too. Please check him. Make sure he's still breathing. Make sure he is alive.
I peek into his bedroom several times over the next hour. I watch his chest rise and fall, reassuring myself and B that he is okay. After his nap, when it seems C.T. may have turned the corner on this second illness, he suddenly spikes a fever. He doesn't want to eat or talk or do anything other than cough, whimper and lay still. My thoughts quickly spiral from concern to excruciating panic and fear.
A virulent form of strep? Bacterial meningitis? What symptoms have I missed?
Oh God. Are we going to lose him TOO?!
And in that honest, raw, desperate place, I just know my C.T. - the only one who remains, the one who sustains B and me, just barely, beyond Zachary's death - may die.
I don't pray for him. I make the only move that makes any sense to me anymore. I get myself together, acknowledge that I don't fully trust my judgment. I calmly ask my neighbors, who are both in the medical field, to come and see C.T. I ask if they'll listen to his chest and help me determine if I should take him to urgent care since it is now after hours at our pediatrician's office. And then, after they unknowingly soothe the immediate strangling, frantic fear, after we're gently assured that an ER or urgent care visit on Friday night is unnecessary, we take him to the doctor on Saturday morning. He has developed bronchitis, which shouldn't be too concerning, and will probably spike a fever on and off, for a couple more days, even with precautionary antibiotics. I smile and thank everyone along the way for their help, for their kindness, concern and input. I go and fill the prescription for C.T. and we talk about how he will be feeling better in no time.
But I know. I know how badly this could have gone for C.T. I know how badly it might go next time, or even tonight, with what appears to be a 100% curable diagnosis. Zachary was almost fully expected to live and thrive. Then, even after he acquired sepsis, and after he survived the first critical 48 hours, it looked like he was going to recover. But, he died. His illness and death left everyone, including all of his doctors, dumbfounded.
We live in constant fear that C.T. will precede us in death. I think about it a lot when I'm driving alone and when he's away from me. I think about all of the ways that C.T. may be taken from us. And not in the theoretical, I've had a close-call with my child sort of way that so many parents seem to have experience with. Our fear of his dying, our desire to keep him safe, doesn't simply keep us on our toes, ensuring that we take reasonable measures of precaution. It doesn't remind us of how fortunate we are. In the aftermath of Zachary's death on top of B.W.'s death, it is difficult to imagine that C.T. will outlive us. Our fears about the lives of our children have materialized, in reality. Twice. Two of our three sons are dead. It feels like death has set up camp in our family's home and waits to exploit any weakness, any illness, any errors in judgment.
When you've heard these words spoken about your child, the words with no hope left in them, that describe a prognosis with absolutely no remedy...
On September 30, 2006
You say you heard his heartbeat just a couple of days ago?
I'm sorry. There is no heartbeat.
Your baby boy has died. There is nothing we can do.
Between January 15-17, 2014
Zachary has something called a gram negative bacterial infection.
We've started four broad-spectrum antibiotics. We can no longer feed him.
He is now having trouble breathing. We need to intubate him.
He needs fluids. Blood and platelets. Pressors. Sedatives.
He is fighting too hard. I'd like to medically paralyze him so he doesn't desat.
He has a 50% chance to come through the sepsis.
Things are looking much better. He has made it through the worst of it.
His vitals are much improved and his oxygen requirements are decreasing fast.
The last blood count marker we were hoping would improve, has.
I think we may have turned the corner. This is very good news!
Things are not looking good. It is bad. Very, very bad.
Zachary has developed an extremely rare grade four brain hemorrhage.
There is midline shift of the contents of his brain.
Our recommendation is to remove Zachary's life support.
He may die on his own. I'm so sorry.
In the meantime, put some thought into a DNR order.
If words like these have been uttered about your child (and for us, about two of our children, in separate instances and due to different circumstances). When against all expectation, your child has fallen on the wrong side of the statistics. When the worst you can imagine has actually happened to your child, to your family. If your child is dead and will never again be present to bring joy or light or hope to your family. Then you know. Then you understand, with a clarity that may seem crazy and dark and irrational to outsiders, that what appears to be "just a fever" can ultimately mean death.
I am certain that most people can't fully appreciate that this is our way of thinking, our reality. I am also quite sure that none of those people have actually lost a son or a daughter. And definitely haven't lost two children.
Our sick boy, who is, at the time I'm writing this, asleep on the couch with a (new) spell of nausea along with his bronchitis, woke up early this morning to draw something special for his dad and me. In his bedroom, before we were even awake, C.T. created these renderings of tattoos he imagines us getting.
They look like some form of dead-brother currency to me, but I'm touched at the precious thought and his early morning artistic effort. We both check the "yes" box and agree to think about getting the tattoos.
This boy, our C.T., is so special, so loved (and all we have left on this earth).