I’m sitting in the Children’s Hospital waiting room. Again. I’m here with The Ax this time (usually it’s Soldier Boy). We’re here to see Endocrine because he’s not growing very well. We see the specialist and she listens to our story and tells us that little Ax’s particular eating disorder is very strange. Maybe she doesn’t use the word strange. Maybe she says unusual or uncommon or not typical or not something we see very often. The exact wording is irrelevant. What matters is that I’ve found myself in a familiar place: getting unexpected bad news from a doctor about my child.
I’d been the one to request the endocrine referral from his PCP (my attending at the outpatient clinic my residency runs). He’d been seen by various doctors for his eating issues before. He’d been small for a few years. No one really thought it necessitated a visit to endocrine. I asked for the referral feeling like I must be overreacting, but also feeling I deserved the peace of mind an uneventful trip to the specialist would bring.
Little Ax had always been the healthy Yin to Soldier Boy’s multiple diagnoses Yang. I expected doctor visits for Soldier Boy to yield worrisome news. I’d learned to brace myself for it over the years. But this news, that little Ax might have something more wrong than I’d thought, came as a blow I hadn’t prepared for. My abdominal muscles were relaxed, my jaw slack. The punch landed and I went down like I had in the early days of the Soldier Boy medical saga.
They wanted bloodwork and an X-ray of his hand to assess growth trajectory. The results would take 7-10 days. She would call me herself to discuss them. I didn’t like the idea of the doctor calling personally with the results. Calling with normal results didn’t seem like a doctorly thing to do. Normal results don’t require explanation; there are no questions to field. If she was calling, it seemed like there was no hope of a normal outcome. I did not say any of this. My mind was relatively blank as minds so often are in the presence of physicians. We should come back in three months, she said, so The Ax could be weighed and measured again and she could get a better idea of how he was growing. Any questions? No, thank you for your help. They’ll direct you to the lab when you check out. X-ray is on the second floor.
We sat in the waiting room for the lab for an hour, Ax on his computer and me on my phone, texting all the interested parties awaiting the results of his appointment like it was election night. You hear the moms discussing what diagnosis brought them there. One mom of what appears to be a six month old baby boy relates he has cystic fibrosis to another mom there with her diabetic tween daughter. The life expectancy of those diagnosed with CF had increased significantly in recent years but is still much shorter than the typical person. This always happens in the waiting room at Children’s. You always find someone with a burden greater than yours, right when your pity party is in full swing.
The interesting thing about it that I’ve found out over the years is that a lot of the families I think are worse off than mine, think the same thing about me. There’s no precise hierarchy of the lost dreams we carry for our children. Some of us go into it stronger than others; some of us surprise ourselves with the strength we develop under the tensile stress of it all; some of us, I suppose, fall apart either for a time or completely.
A woman leaves the lab with her tiny newborn baby on her shoulder, her belly still swollen from the birth that couldn’t have place more than a week ago by the look of it. I remember when I was here with Soldier Boy when he was just a few days old. It’s a bad memory. I’d like to put some beautiful spiritual spin on it, but I can’t. Watching them put the needle into your tiny newborn’s arm is just an ugly thing. Having doctors tell you there is something very wrong with your perfect little newborn is heartbreaking. It’s not a break that ever completely mends.
I go to ask why it’s taking so long for us to be called and they tell me they paged us quite a while ago. My pager didn’t go off, I tell them. They offer no apology but tell me he will be called soon. The Ax is calm as the phlebotomist draws his blood, asking her questions about the meaning of the different colored tops on the vials she uses to gather his blood. She says he reminds her of her own son. I think that it’s a nice thing to say, but it’s a thought detached from feeling. My heart is in a sad place from long ago.
We finish and head to radiology for the X-ray of his hand. I remember taking Soldier Boy there for CTs and MRIs of his brain. It doesn’t feel like a memory; it feels like I am there. Is it possible to get PTSD from having a sick kid? This feels like a flashback. I remember how stifling the crowded waiting rooms full of kids and parents felt. That “Max and Ruby” had been playing on the waiting room TV that day of the first CT. I remember looking at the cartoon bunnies and commenting to Soldier Boy’s dad that it would be funny if one bunny began humping the other as our pet bunnies at home often did in their eternal battle for dominance. We laughed. We had to.
I think of it now as I look at the Ax happily chattering to someone he’s introduced himself to in the radiology waiting room. You have to laugh, I remind myself. There are so many more happy times than struggles for my kids. So many happy times ahead for them along with the struggles. Grieving demands our attention but we must make room for laughter too. Laugh now while you bide your time in the waiting room. Tomorrow has enough worries of its own.