Helplessness in the Healing Process.

How my son’s cleft palate surgery is making me a better eating disorder therapist.

I have been in the eating disorder field for 20 years. I began in research by attempting to identity risk factors for the development of an eating disorder. We examined concepts like “acculturative stressors”, and we explored if there were significant differences in disordered eating behaviors among college students who were athletes or independent exercisers. The experience was exciting, it was also quite removed from the day to day of what it is like to live with an eating disorder.

I bridged the gap between researching eating disorder behaviors and working with folks struggling with these deadly disorders. I found my permanent residence on the clinical side. There I was able to connect with young college students (I began at a college counseling center) and understand what contributed to their restriction, bingeing, and purging. I found the work deeply meaningful.

As many clinicians who specialize in working with disordered eating do, I spent some time working at a treatment center. There, I deepened my individual clinical work with those battling eating disorders. It was also at this higher level of care that I was exposed to working with parents. I feel somewhat cringey thinking back on this time. I was a) young in age and b) young in the field, but I was tasked with educating parents. In this specific center, therapists and dietitians offered “parent coaching” to the parents of the children we saw. This meant that once per week I sat down with parents and—this is the cringey part, I TOLD parents how to help their children heal from their eating disorder. It wasn’t the collaborative and empathic experience that I would be working on creating today. It was far more of an ivory tower experience and thus likely a potentially shaming one.

Young clinicians are obviously valuable in the recovery process and even helpful to parents in their journey, but I can look back on that time NOW with a tremendous amount of regret and empathy for what these parents experienced.

credit: istock/Wojciech Kozielczyk

They were scared. They were desperate. They just wanted to help their child heal. So, they said the “wrong” things, made “poor” choices, and were sadly criticized by clinicians like me. I wish I could turn back time and offer so much more empathy. Obviously, I know I cannot BUT I do get to move forward in my clinical work with a tremendous amount of deep awareness and compassion after my recent experience with my son and his recent surgery.

My eldest son was born with a cleft palate. It was relatively mild, so we were told that we might be able to dodge surgery. He had a team of craniofacial experts following his case. We had to meet with them once annually in addition to some speech therapy in order to track his progress in that domain. We made it 7 years with no mention of surgery, but during his last annual check-up the surgeon suggested we strongly consider moving forward with the procedure due to an excess of air escaping when my son spoke. As a parent, hearing your child must undergo an invasive surgery is no fun and when we learned more about the recovery process we really struggled.

Following a cleft repair, kids are on a liquid diet for TWO WEEKS. This was a hard pill to swallow (no pun), but we also were informed that the liquids also have to be strained. No trips to the local smoothie shops without first making sure a rogue strawberry seed didn’t make it into the cup. It is no joke, and my son handled the news like a champ. We talked about it for about 6 months (I am a therapist after all). He was able to ask questions, have meltdowns, express jealousy, express excitement – for the amount of milkshakes he would get to have. We were all ready, the borrowed Vitamix, the early ice cream maker Christmas present, the excessive amount of extracts to experiment with…But then the actual surgery happened and recovery was not as we discussed. No more excitement over milkshakes, just a lot of fighting.

My son had to spend 2 nights in the hospital recovering and I immediately saw myself in the parents I had once worked with during my early treatment center days. I begged my son to drink. I offered bribes to get him to swallow. I did all the things I would have definitely not suggested to the parents watching their loved ones refusing food.

I am in no way equating a controlled and monitored surgery with a child developing a life threatening illness. I see how vastly different these experiences are. I also understand the helplessness loved ones face when their child is suffering from an eating disorder in a different light. Of course, I always tried my best to offer empathy to parents, but I think I might have missed the mark.

The last few weeks with my son have been a challenge to say the least. We decided to go through with the surgery during his winter break from school, a time where houses are full of holiday spirit, loads of cookies, and GERMS. We all got sick leading up to and following surgery. My son also had to tolerate a ton of sadness around not being able to participate in his class party, school frosty run, and countless other activities. I can remember on many occasions having parents beg treatment teams to let their child out of programming for the day to attend an activity. The experience of having your kid miss out on so much is painful. I also understand this through a new lens.

My son’s mouth is healing, and he is on the mend. I continuously have to check myself and not push him to drink but rather trust he will get back to eating a good amount once he is properly healed. But tolerating this helplessness is hard. It is also bringing me new perspective in my clinical work—not just with my eating disorder cases but in general. As parents we will all face helplessness. We cannot force our children to do things or be people they are not. It is so hard to sit with and I am grateful to be able to know this discomfort and offer the empathy parents desperately need.