I had another plan for what I was supposed to talk about today. But my mind is frazzled and distracted and I cannot think straight right now to write it. For a moment, I thought about posting that I was just going to take today off for personal reasons and leave it at that. But then I realized that the whole point of this blog is to share my journey towards trying to become healthier, and so I might as well be completely honest when I have a setback.
I had been doing quite well over the last month, with January being one of the best months for me in over two years, in terms of my emotional and mental health and well-being. But the morning of February 1, my ex-husband and I accompanied my 12 year old to his monthly appointment with his eating disorder doctor, whom we have been seeing for over a year. And we ultimately decided it was time for my child to enter an inpatient treatment program. I don’t know why, exactly, this has led me to feel overwhelmed and anxious and has triggered my anxiety to be on full-blast right now. After all, we have been battling my child’s eating disorder for over a year. And if anything, putting my child in this program will likely be exactly what he needs to finally start recovering.
(By the way, I am using the “he” pronoun for my child but he actually goes by both he and they – he is gender fluid but right now is okay with “he” being used.)
My child was diagnosed with ARFID over a year ago. ARFID stands for avoidant restrictive food intake disorder. It’s kind of like picky eating on steroids. Many kids with ARFID also struggle with OCD and anxiety, among other issues. My child does as well. Basically, what I’ve been told is that eating and food leads to the lighting up of fear/anxiety/disgust centers in my child’s brain. What this looks like in practice is that my child doesn’t eat enough to sustain growth and development, especially for a 12 year old. He does not eat enough either in variety or in quantity. And that is an understatement.
For my child’s entire life, he was a ridiculously picky eater. My child could distinguish different brands of the same food items, without me telling him that I bought something different, and he would REFUSE to eat the off-brand. Any attempts at me trying to trick him would never work. I was dumbfounded how he could tell that I had purchased a different brand of powdered sugar donut. But he could. He was also very sensitive to any sort of sensory input.
But there was always a solid list of relatively healthy food options that we could rely on – yogurt, chicken nuggets, pasta, mac and cheese, different fruits, lots of carb-heavy snack foods. And candy. My child LOVED candy. Over the years, some things phased out. For example, while it used to be that my child ate several types of yogurt, after awhile, only 1 brand of yogurt would do, then only one flavor. Now, yogurt is not a food that my child will touch.
But over the course of 2020, my child’s list of foods and food intake became severely restricted. I believe this was exacerbated by my divorce and the changes in our family. My child was definitely the one that was most traumatized by the divorce. Even though my ex-husband and I are very friendly and supportive of each other and co-parent with a unified front, and he only lives a couple blocks away, my child was devastated at the breakup of our family. It’s been two years and it is still hard on him.
One of the ways this manifests is that my child developed this eating disorder.
It’s been exhausting.
One of the hardest aspects of having a child with this disorder is the helplessness that I feel. And getting the judgements of other people. I can’t tell you how many people think that the way to fix a kid that is a picky eater is by just not giving them other options until they finally get hungry enough to eat what I give them. That may work for a kid whose brain functions normally.
It does NOT work for a kid with ARFID. If I give my child food to eat that his brain is telling him is not safe to eat, he won’t eat it. He will go days without food. He will literally starve himself to death before eating food that his brain tells him is unpalatable and dangerous. His brain is stuck and tells him that he could die if he eats food.
It is horrific to watch. I just want to feed my kid, you know? I just want to nourish him. That’s what moms are supposed to do. But I can’t. I can’t tell you how many times I have taken him to the grocery store and walked down the aisles and offered to buy him ANYTHING AT ALL in the store. Even junk food. Even candy. Candy is at least calories that would provide energy. But even most candy is unpalatable and “dangerous” to him right now.
And of course, the more I stress about him not eating, the more he senses my stress and gets upset and is even more unable to eat. It’s a vicious cycle.
So, it’s time. It’s time to finally put him in an inpatient program to see if he can improve, surrounded by eating disorder experts who know how to help him through his food phobias and train his brain to be able to accept a variety of food again. He might very well get a feeding tube, so that his body can be nourished. One of the challenges for kids with ARFID is that the lack of eating prevents their brain from working well enough to have the flexibility and resilience to improve. And so it’s possible that once he is actually getting enough calories through a feeding tube, he will be able to do the type of exposure therapy needed to add new foods into his diet. That’s the hope.
Anyway, this whole experience is just freaking me out, even though I know it is for the best. I guess maybe it just makes this whole thing real, the fact that my child struggles with this eating disorder. I mean, that might seem silly, because I already knew it, it’s been a major stressor in my life for the last year. Maybe finally getting this intensive help for him is just allowing the stress that has been building in my body all this time to finally come to the forefront to be released. After all, I’m an expert at repressing stress.
So, I’m going to just allow myself to fall apart right now, just a bit, and not necessarily do all the things that I’m supposed to do each day. I’ll just allow myself to feel overwhelmed and scared for my child and his future.
I posted on a facebook parent support group yesterday, to ask other parents if they knew anyone who was treated at Boston Children’s Hospital, to learn about their experience so I can know what to expect. And someone offered to bring me a meal to give me support. At first, I was like, oh no, I’m fine. I don’t need someone to bring me a meal. And then I realized, wait a second – I hadn’t eaten the entire day except a few cookies because I had been so busy trying to help my child. So, I decided to accept her offer of food. Maybe if I can do a better job of letting other people take care of me, my own child will do a better job of letting me take care of him. Maybe.