It was a terrible, horrible, no good, very bad day. – Alexander
I spent a lot of time in the car yesterday driving to and fro, between Kartini and home. So much so, that I began to recognize a theme in the music playing on the radio. One song after another hit on the idea of hope. I thought to myself that God was absolutely trying to tell me something. Because I know He does that. I kind of smiled to myself, thinking about how calm the weekend had been, I mean it had been almost normal, and I was pretty sure I had forgotten what that looked like. It occurred to me I hadn’t written anything on the blog for a while, and that HOPE was an excellent topic. I sat back a little in the driver’s seat and let myself relax. Something I am really bad at. People are always telling me to just relax, and I keep telling them, I don’t know how!! But in that moment in the car, minutes from my house, I did relax. As I pulled up to the curb I received a text from a friend asking how I was doing. A loaded question, and currently my least favorite. But on this day I felt like I could say, at this moment in time I was okay, and not be lying my face off.
I carried this okay feeling with me back to the clinic when it was time to pick Connor up. It was just a weird afternoon. We got on the elevator and there were like 8 firemen, two people from another floor, and Karly the receptionist from the clinic already in there. Mind you, this is a teeny tiny elevator, and there are NEVER other people from other floors on it. Okay so there are only 5 floors to the building and Kartini takes up the top 2, but still. There was a little confusion as the firemen were trying to figure out which floor they were trying to get to (again there were a finite number of options here) and then it was Eilidh, Karly, and me. Karly mentioned that Connor’s therapist wanted to meet with me really quick. We walked in and I found Annie his therapist. The first words out of her mouth were, How are you? A lump formed instantly in my throat as I stumbled over the words that had come so easily only hours before.
Here’s the thing about people at Kartini asking you how you are. They already know how you are, they don’t really need to ask. If they are asking it means they have something bad to tell you and even with all their years of experience, are not sure how. Because telling people bad news sucks no matter what your degree is in. She asked if we could talk for a minute and I followed her to her office. Let me stop here to help you understand Annie and her role in Connor’s care. She is our family therapist. We meet with her once a week for an hour and talk over a large number of things ranging from insurance, to continued care outside of the clinic, to Connor’s day to day needs and emotional well being. In addition to all of this she is also a liaison of sorts between us and the doctors, and the milieu therapists. She is sweet and lovely, and soft spoken. Funny, and caring, and like everyone else at Kartini, totally enamored of Connor. So if you’re gonna get bad news about your kid, Annie’s not a bad person to get it from.
Connor has put an enormous amount of pressure on himself. He knows he is sick, and that food is his medicine. He knows he isn’t eating as well as he should, even though he is eating more than he was. Perfectionism and OCD are common symptoms of an eating disorder. When he is not at his best, he feels himself to be stupid, when he doesn’t finish his food he calls himself dumb, and apologizes for not being able to eat. He is so full of anxiety he can’t focus on anything but what he isn’t able to do. Another common symptom of an eating disorder is the body putting itself into a hyper metabolic state because it is starving. So whatever Connor does eat is burned up almost immediately. Thus preventing him from making any real progress. Last week his doctor, Dane, and I came to the decision that Connor needed some medication to help take the edge off all of this anxiety. Hopefully enough to allow him to eat properly. Meds that would begin to be therapeutic after only 3-5 days. So the prescription was sent out and I headed to the pharmacy to pick it up. I don’t know what it is about my kids and their illnesses but I kid you not, every time they need something it is some weird thing that is hard to find, isn’t typically carried, and needs to be ordered in and will take days to get filled. This time was no different. We had hoped to see results by Monday, but instead couldn’t start the medicine until that day. Now time is slipping away and so is my boy.
The solution Annie presented to us was this. He would need to go on a feeding tube, and he would need to do it as soon as possible. Yeah, maybe that post on Hope was for another day. Connor’s worst fear since starting at the clinic has been that stupid tube. Almost every girl in his group has had one, or does have one, so he’s no stranger. It is in fact not uncommon for the younger kids with eating disorders to need one at some point. This disease is not linear. There is no smooth straight path onwards and upwards. Not initially anyway. There is a lot of up and down, backwards and forwards. We know all of this. It’s still crushing us. The weight of this illness, it’s so much. Now, Dane and I have realized this new thing that feels like a set back, will isolate us from the “normal” even more than we already feel we are. We know Connor will not want to go out, be seen with that tube, have people looking at him. He will be constantly aware of it, and feel others are also.
We all hate this, well right now Dane and I are hating it for Connor because he has not been told what will be happening. We as his care team felt it best to wait until closer to the time of the procedure to explain things. Hoping to keep him from agonizing over it. Huh. There’s that word. Hope. Really that’s what this feeding tube is for us, though it feels like a bad thing, a scary thing. It gives us some time, it releases Connor from the weight of his inability to eat. It fuels his brain so we can get him to a place of HOPE. Because once he’s there, he can see clearer, and function better, and KNOW that this treatment is working. That it is hard, hard, work, and he has to do most of it – but it is working.
In a way this post was about hope after all.