I’m sitting in the basement atrium of a big building called the “Genirose Building” at Mayo in Minnesota. The ceilings are tall and there is pretty hanging artwork above us but the carpet is kind of old and there are these bright orange, worn-out, comfy chairs that all the parents gather in; therefore the parents refer to our discussions as “Orange Chair Therapy,” more on that later. Each day we arrive around 7:45am and the program ends for Eleanor around 4:30pm. During the day the kids (and parents can join in) do simple stretches in the gym with fun music from 8-8:30. Then the kids have group (making goals for the day, doing a mood check-in and then a learning piece) and parents have group too. Then there is lunch, then a family group where we have a lecture or play a game with the kids. Parents usually have a break from 2-4pm unless you have separate meetings or check-ins with doctors or nurses. For the teens the afternoons are filled with family group, occupational therapy, physical therapy, biofeedback and recreational therapy or relaxation (she has learned yoga and tai chi along with the muscle relaxation and deep breathing styles). Then we attend a mandatory fun activity until 5:30 or 6pm. This has often led to us to grabbing dinner with a few of the other families (now friends) and we land back in our hotel room around 7 or 7:30 depending on how much laughter is happening. To keep up with PRC concepts or strategies Eleanor has to then do homework of some sort and shower and ends her day with a chore and 10 minutes of diaphragmatic breathing.

We have covered a lot of big subjects very deeply and very quickly and ALL in the context of kids with chronic illness or chronic pain: depression and suicide, anxiety, the psychology and biology around eating and appetite, pain behaviors and the brain, schedules and rules, central sensitization, what to do on a difficult symptom day, communication, practicing healthy communication, moderation and modification, exercise and PT,  muscle relaxation and diaphragmatic breathing, the “5 Reasons to Miss Anything,” the ways that chronic illnesses affect various family members, the way other people talk to us about chronic illness and pain, doctors, doctor appointments, ER appointments, the difference between an acute illness and a chronic illness, body scanning, autonomic dysfunction, parenting strategies (“warm neutrality”), the stages of sleep, what sleep hygiene is and also how important it is to maintain a strict sleep hygiene habit, drugs, all the drugs, and the way our culture has changed regarding pain (and the pharmacological impact that determines how we understand physical pain). There are even more topics but I bet you get the idea. There is A LOT, which is why the program is 3.5 weeks long. Most of the parents feel like 3.5 weeks is a lot but not quite enough. That’s because it feels scary to get ready to go home and that’s exactly what we are doing—getting ready to go home. Eleanor graduates tomorrow afternoon and we drive back Friday afternoon.

As of today Eleanor is only taking one daily medication for her bleeding tendency, one for anxiety and 2 vitamin supplements, which is sort of remarkable. When we arrived at the PRC she had two pages of medications in her chart, so two medications is a pretty big deal. I haven’t heard her complain about chest pain, dizziness or seeing black spots in over two weeks, in fact I haven’t heard her complain about much at all except having to leave. She also knows how to workout on her own in a gym doing both cardio and strength training. She has had at least 3 times while we were here when her symptoms were moderately bad and she got through those episodes without me and without meds (breathing, visualizing, distracting, PST—positive self talk—and more deep breathing). She has created a strict nighttime routine for herself and has begun practicing autonomy with gusto! She wrote to the woman who drives her to and from her school to set-up that schedule and wrote to the bookstore where she volunteers to set up that schedule--all on her own. She has asked me if she can try going back to a “regular” public school next semester because one of the PRC rules is that she must be out of the house each day for 6 hours minimum. She has asked me to take the video camera out of her room (we used that in case she was sick and I couldn’t hear her calling) because that’s a pain behavior. She is talking about what she wants to do for her two mandatory extracurricular activities, and the greatest gift of all… she has made some seriously strong friendships and has laughed more than I’ve heard her laugh in years and years and years. 

Today Eleanor and I met individually with one of the psychologists to talk about Daddy feelings. It’s the only piece of the Eleanor puzzle that hasn’t gotten addressed in a straightforward fashion, because this is a pain clinic, not a grief clinic and she does NOT like talking to me about Daddy stuff; however, emotions around Daddy’s sickness and death need to be worked on in order to help her feel healthier. Meeting with the psychologist was another hard thing to do but worth it. Tomorrow her nurse and myself and Eleanor have a phone conference with Eleanor’s new therapist that we are hoping works well for her when we get back home. We will explain about the PRC concepts and the goals Eleanor has which will include practicing talking and remembering things about Daddy. The psychologist talked about trauma today and how it is sometimes easier to push those events and feelings down so they don’t hurt so much, and Eleanor agreed, but clearly that comes with some pretty uncomfortable consequences. I’m praying hard that Eleanor and this new therapist are a great fit. I hope, I hope, I hope!

Orange chair therapy… it’s going to have to wait until another update because I have run out of time, but I’ll just say that there is absolutely no gift greater than the gift of dear friends who have walked your walk just in different parts of the country!