Pages from My Thought Journal

“The difference between a flower and a weed is a judgment.”

– Unknown

I‘m a mother to a child with medical complexities, and the problem is this: I’m tired of feeling like I’m surviving, or enduring, but rarely thriving. So, I paid $200 and signed up for a 15-week wellness program out of The University of Michigan for parents of children with special needs. This evidenced based program, “Mood Lifters,” is modeled after Weight Watchers. This means, instead of a focus on losing weight, weekly goals are set and points are earned within the categories “body, actions, mind, mood, and relationships.” I intend to blog about my experiences with each weekly topic and it’s my hope, by the end of this project, thriving won’t seem quite so elusive.

Week Two: Thinking Traps

Goal: Complete thought journal entry (or one “Thinking Trap” row) for 1 mind point. Weekly goal = 2 mind points and 4 behavior points (from activities in the categories “Pleasurable” or “Valuable.”)

A Room for Rumination

9/27/2020

I am writing from Nora’s hospital bedside in the emergency department at Children’s Hospital. In the last six weeks, she has been hospitalized twice and had multiple ER visits for abnormal seizure activity. We’re in room number four — a room we’ve been in before — just a few days after Christmas 2018, when Nora was (re) admitted to the hospital. On that particular trip to the ER, Nora had a cold. She arrived to the ER (on oxygen) after having been discharged on room air just days before, on Christmas Eve.

On that visit, the doctor introduced himself and asked, “what brings you in today?” I remember not answering him right away, and instead I stared down at the tile floor, and then at his shoes — a shoe choice which to this day, fascinates me — shredded and worn Vans sneakers, with laces that may have been white at one point, but were grey. If we are to consider our fashion choices an extension of our self-expression (which I do), his shoes said, very clearly, down to earth.

So, I did what I do with most down to earth people, I smiled and invited him to do the same by answering his question, “I like to see how operations are moving along down here — it’s really more of a social call.” He laughed, and eventually transitioned us into respiratory concerns as we, together, created a plan for Nora. Before he stepped out of the room, I requested he place orders which would allow me to give Nora her home medications (per hospital etiquette). When I detailed my preferred wording for these orders, and began mixing together the medications I brought from home for Nora, he stood in the door and watched me draw up the medications in 12 ML syringes, before he said “You’re good at this.”

And in response, I said automatically and somewhat insistently, “This? No, I suck at this.“

A Thorough Mental Scrubbing

The reality I am faced with (then and now in this moment) is this: my daughter is not improving at home and in my care, her status is declining, which brings me (time and time again) to the emergency department. And today, on a day I am feeling quite defeated, and saddened by my daughter’s circumstance, I find myself struck by my own words and thought process, “I suck at this.” Because, as a medical parent, it is difficult for me to separate myself from my child’s health status. And if I was good at this, and if I were truly “the expert” (as Nora’s medical team so often, frequently, and always, labels Tyler and I) then we wouldn’t be here.

And so begins the introduction to this week’s wellness topic, “Thinking Traps.” This week was devoted to what I am calling, “a thorough mental scrubbing,” but what some of you might know better as, Cognitive Behavioral Therapy, or CBT. The foundation for this week’s point collection is the self-examination of unhelpful/ negative thoughts, exchanging those thoughts for more helpful thoughts, and charting through the process. From the The Mood Lifter’s manual:

“We can get stuck in self-defeating ways of thinking about our past, our future, and ourselves. We may believe and behave as if our thoughts about ourselves are facts. These ‘automatic’ thoughts can be difficult to challenge because they have been reinforced (through repetition) and are emotionally loaded.”  

– Mood Lifters, Parents of Special Needs Children Special Edition (p.27)

Not every thought and thought process is as emotionally loaded, complex, and devoid of evidence as “I suck at this.” So to earn my two behavior points this week, and to ease my way into “Thought Traps” I tackled smaller examples of negative thinking and did my best to identify skewed or abrasive thought processes.

I won’t bore readers with the details of my thinking trap charting and exchanges thus far, but I can tell you, I am struck by how quickly I can shift my automatic negative (self-critical) thinking to a positive or helpful statement if I take the time to respond to my thought as if it belonged to a dear friend (we are often kinder to others than to ourselves, aren’t we?). Despite growing more familiar with thought traps/ CBT, and journaling through this week, I am wrestling (still and again) with the untamable thought: “I suck at this.”

A Thought Exchange

As I work to cultivate a kinder and more hospitable internal dialogue in my stressful circumstance, it is not a thought exchange which comes to mind, but a simple prayer: “God, help me know your grace in this.” Because, as mentioned within the manual, some thoughts are difficult to dispute and challenge. And sometimes, oftentimes, we might need perspective outside ourselves. And from where I sit, in muddled and fragmented stress-thoughts (as can happen at my child’s hospital bedside) I am choosing to accept wholeheartedly and without dispute, the helpful and positive thought exchange from an ER doctor: “You’re good at this.”

A Nora Update

A note on posting day: despite many medication adjustments in recent weeks, we are struggling to minimize Nora’s seizures. She is currently on six therapeutic interventions for epilepsy (and has 2-3 rescue medications we have relied heavily on for the last several weeks). You are welcome to include Nora in your thoughts and prayers as we continue to adjust her medications and as her body endures the side effects of both anti-convulsant medications and epilepsy.

Week Two Point Totals

Behavior points: From activities in the categories “Pleasurable” or “Valuable” — I painted my nails & got my hair done = 2 points. Continued reading Choosing Civility, by P.M. Forni, and devoted special attention to the chapter titled, “Accept and Give Praise” = 1 point. Blogged = 1 point. Point total: 4 points

Mind points: Completed two rows in thought journal. Point total: 2 points