We spent last night in the Emergency Room at Paoli Hospital. It wasn’t our first visit, and it won’t be our last. But each one, in its own way, both strengthens us and defeats us a little more. Spawn has a somewhat complicated broken arm. I think he’s had 5 broken arms since the summer of 2013, on top of stitches, sprains, strains and scrapes. He’s had MRI’s and IVs and a host of other medical procedures. Ehlers-Danlos Syndrome is a beast. No matter what happens, though, we’re the ones laughing in the waiting room, or pulling the door closed in the examination room so others in pain don’t hear us carrying on. But last night, it felt like our spirits were broken, too.
I’ve been wishing 2016 away for some time. The summer was hard, and fall was a slog through thick muck. While I was worried sick about our finances, a job, the election and myriad other things, the spawn was battling his own demons, and he spent some time out of school working on ways to combat the depression and anxiety that accompanies an incurable disease that causes chronic pain and keeps him from doing things he wants to do. He’d always managed with high spirits and lots of humor, so when he started showing signs of it really bothering him over the summer — not so much the pain but the constant dealing with doctors and appointments and people asking questions — I actually felt some relief that he was expressing what I thought I would have been feeling. I wasn’t prepared for the crash, though, or how hard it came. When he was asked what the major triggers were for his “bad thoughts”, he cited Donald Trump winning the election as the first. Therapists were second because he is, after all, my spawn.
We got through it, though. He’s bounced back to a degree, and I don’t feel like he’s quite so fragile. He’s working with a pro about how to cope and what to do. I learned quickly that having a child who is struggling emotionally is a lot different from having one with physical problems, and while the warm and supportive reactions from some friends left me with Shock and Awe, the reactions from others felt more like Shock and Appalled. I was thinking yesterday of a couple of them who were just freaking mean and rotten, like this was not the child they’d known forever but some other kid about whom it was suddenly okay to say terrible things. It’s hard to forgive even your best friends when they’re assholes about your child.
The phone service was cut off on Tuesday because I didn’t have enough cash to cover the bill in my account. I didn’t panic. I figured the money would come in, and it was okay. And I did not tell the boy because I’m trying to keep his worries centered on things 10-year-olds worry about, like Minecraft villages being destroyed by marauding bands of friends and whether Jessica hates him because she likes him or hates him because she hates him. We went about our business of not cleaning the house, ignoring the mountains of clean laundry on the living room floor, avoiding the maniacal puppy unless she was eating something that would kill her, binge watching movies and taking photos of the cats in costumes. Last night, I asked him if he could walk some trash out to the curb. He did, and then I heard the screaming.
He came in, sat down and howled that it was broken and to call 911. Most parents, in this situation, might be tempted to “wait and see” for a little while, or put ice on it, or call the pediatrician. I have learned, though, that when the spawn says something is broken, it’s usually broken because he knows what broken feels like. I grabbed our hospital go-bag, recently reorganized and stocked and placed near the door, and reached for the phone that had no service and cursed under my breath. Then I took out the keys, and we drove to Paoli.
It’s close, and they took us quickly. Possibly, it was because the wailing child was threatening to projectile vomit across the waiting room. I like to tell myself (and others) that he “experiences pain differently from us” because of the EDS. But also, he’s got quite a flair for drama. He told the triage nurse to “cut it off, cut it off right now!” and when she started to explain the smiley face pain scale to him, he took the card, threw it on the floor and yelled, “It’s a fucking 14. What’s a 14 when the frowny face is a 10? It’s cut it off it hurts so much.” I just smiled back at her. Much like when he’s at school, he’s theirs, when we’re in an ER, he belongs to them. The put him in a wheel chair and ordered some X-Rays.
“Shall we take your ER photo now?” I asked him.
“Let’s wait until we’re in a room.”
“I totally screwed this up,” I told him. “We should have gone straight to CHOP. They got toy donations and Ryan Seacrest is probably actually there entertaining kids and the Wawa cart would have mixers for my baby booze bottles. Wrong move. I panicked and came here. Maybe they’ll send us in an ambulance?”
“Lights and sirens, Mom. It’s the only way to travel by ambulance.”
We met a nice married couple, two men, one sick with the flu, and we tried to cheer him up with our stories of ER adventures. Spawn liked them and so did not puke at them, and he told the man that if he wanted to be seen sooner, he needed to ramp it and get loud. I offered them both some airplane bottles of booze from our hospital bag. The husband holding the bucket into which he might throw up looked at us like we were crazy, but the other husband got up and started making noise. See, we’re helpful. Soon, they were in triage and we were in x-ray, and that’s when things got fun.
The spawn did not want to move the arm, and he was ornery and giving the tech grief and literally howling like a werewolf. She told him to stop. He glared at her. She got snippy. He got uncooperative and screamed. I started reciting Portia’s “Quality of Mercy” soliloquy in my head to tune them out. She got her pictures, and from the back of the room, over her shoulder, I saw the breaks. Bad enough, but not surgical bad, I thought. (I got my MD on the internet at Mayo Clinic, and from spending 62 million hours in hospitals). Then, as she was giving him his arm back to put on the ice, he told her, much like he was thanking her for her kind service, “You might want to wash your hands and wipe that stuff off. I have MRSA, and your hands were all over it.”
Well done, spawn. Nicely timed. Who are you? She lost it. And boom, we were back in the waiting area, this time alone, and not because there were no other patients. Somehow, they were on the other side of the registration desk from us.
A nurse came out and gave him some nasal fentanyl, probably trying to knock him out so he’d stop speaking. But EDS is a metabolic disorder, which means medicine doesn’t work the way it necessarily should in him, and fentanyl, while it does take the edge off his pain, makes him mean. I know these things. This, folks, was not our first or our worst, rodeo.
“It’s broken?” he asked me.
“Yeah, broken, not too bad, looks like two places. Definitely a cast, but they’ll do that at CHOP. They’re either sending us there tonight or sending us home.” How I knew all of this, without having talked to a doctor or nurse, is testament to my broad knowledge of medicine and procedure. I’m adding that stuff to my LinkedIn profile. Please recommend me for it.
“I hate this shit. I hate you, 2016!” He ranted for a while about the accident, EDS, life in general and some other crap I don’t remember because I try not to pay attention his fentanyl-fueled diatribes. Instead I sat, staring blankly at a wall, wondering if the tightness in my chest was a heart attack, and if it was, did I even want to tell anyone it was happening or try to stop it.
“Upside,” I said, “You can whack Jessica on the nose with the cast and act like it was an accident. It’ll be her fault for getting in your way.”
“True. And I can deflect Nerf bullets with my cast, and they’ll bounce.”
“I won’t have to handwrite or type if they do the cast right.”
“No gym for at least a month,” I added.
“No bathing,” he said with glee.
“Oh, no. I’ve kept the special thing to allow you to shower. You could even swim, if it wasn’t, like 34 degrees out,” I told him with even more glee.
He started to roll himself around in the wheel chair with his one good arm, so not very well and without clear direction. He giggled as he crashed into walls, and the nurses looked perplexed because they’d tried their hardest to knock him out and instead he was racing around while I watched but pretended not to see. Finally, while wheeling himself backward without looking, he crashed into a (thankfully empty) gurney, spilling everything on it and himself out of the wheel chair onto the ground with a thud and then a screech of pain.
Nurse Ratchet came out then, and she was scary. She put the spawn back into the chair, arranged the broken wing, locked the wheels and told him not to touch them again.
“The dog won’t be able to bite through a cast,” he pondered. “But she might get stuck on it, and then I’ll have to drag her around with me by the teeth. They’ll love that at school.”
We looked at each and started laughing so hard we were crying.
And then he was crying about how much he hates being the kid who trips and falls and breaks something and how much he wants to play sports and not get tired and headaches. It all came pouring out of him. And I held him, careful not to hurt his injured little body and let him cry.
They splinted it soon after, and they told me to let CHOP figure out how to cast an arm with a healing wound they’re treating for MRSA. It sounds like more appointments to me, but we’ll see.
I finally got the WiFi hooked up to the tablet, and I posted on Facebook, and I got in touch with Dee, who was in a panic. The no phone thing is hard. That’s worrying me now. She asked if I was alone, and I said of course. I blamed the phone for it, but the truth is that there is no one to call anymore. It’s just me and my special snowflake. This crap is really hard on him. Me, too. Doing it alone is no walk in the park, and there are times when I’d give anything to have another adult “just drive for a little while” as Bob the Billionaire puts it. But for him, at 10, looking at the rest of his life with this? I can’t imagine. I know it’s tough, and he can be tough and stubborn and quite a handful. He’s a strong kid, and he’s going to be a strong man. But he can also be generous, compassionate, soft, kind and hopeful. He’s always hopeful.
And soon he’ll be “armed” with another Weapon of Mass Household Destruction (WMHD) aka a fiberglass cast to mothers who have BTDT.