The Lotus Flower

The lotus flower is troubled

At the sun’s resplendent light;

With sunken head and sadly

She dreamily waits for the night

Heinrich Heine

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 Three: Sleep Habits

Goals:

Behavior 4 points	Mind 2 points	Sleep 7 points
Behavior change: from activities in the categories “Pleasurable” or “Valuable”	Thinking Traps: complete entry in thought journal (1 point per entry)	Sleep Habits: earn 1 sleep point per day by initiating new sleep habit

Barriers to Sleep & Glints of Hope

Since I became a mother, I have struggled with sleep and with feeling hopeful that Tyler and I might ever again enjoy long and restorative sleep. I imagine this struggle began with Nora’s epilepsy diagnosis. Since she was 3-months-old, Nora has had seizures almost exclusively out of sleep, or upon awakening. Over the years, there have been periods when seizures happen every night, or multiple times per week. Aside from epilepsy, other sleep disruptors for Nora, and by extension, Tyler and I, include: sleep regulation (too much sleep during the day due to medication changes or day seizures), the need to be repositioned, or diapered, throughout the night, restlessness/ insomnia (medication side effects), vomiting or retching (not tolerating PM G-tube feed), or respiratory concerns like a cold (this involves “sick plan,” or respiratory treatments every 3-4 hours throughout the night.)

While sleep has been a challenge over the years, this week, possibly for the first time since Nora’s epilepsy diagnosis, I feel hopeful about taking intentional (evidence-based) steps towards rest and sleep for myself, and for my family. This feeling started during our group’s meeting as we learned about and discussed the sleep stages, the benefits of good sleep, how many hours of sleep to strive for, the circadian rhythm, and the difference between sleep and sedation. We also covered several tips for minimizing disruptions to sleep by developing a “wind down” routine, and creating a comfortable sleep environment. Many of these topics translate to point options/ goals, so by the end of the meeting, I felt I had a clear and realistic path to forming stronger sleep habits.

Week Three Point Totals

To earn my sleep points, I eliminated caffeine 8 hours prior to attempting to fall asleep (1 PM), and as it turns out, I’m actually feeling less tired, and I’ve had more consistent energy throughout my day! This earned me my 7 points, but I was so excited about this week’s topic that I also chose to wake up at the same time each morning (give or take 30 minutes) but due to the point maximum in this category, I’m only cashing in for 7 sleep points (verses 14). I was able to complete my thought journal (2 points), and earn my behavior points (4 points.) As a valuable activity, I chose to combine writing/ blogging with the intention of creating a “wind down” period for myself before bed. My goal was to write out anything and everything that might be on my mind, or need processing, so as not to carry it to bed with me — the following letter, to Nora, is a product of this activity.

The Lotus Flower

My dear Nora,

The house is quiet, the lights are dimmed and I have a candle glowing — the lovely, iridescent lotus flower with space for a single tea light, the one we marvel at when it’s just you and I. Tonight, I’m writing about peace, rest, and sleep. When I think of these three words together, I think about the first 3 months of your life. When I was quite pregnant with you, women often told me to “Sleep now, while you can!  When the baby comes, you won’t be sleeping!” But once I was no longer pregnant, and my body was no longer working hard to grow you inside me, my body was able to transform sleep into real and noticeable energy (even with just a few hours at a time.) When your dad went back to work, our mornings were lovely and quiet, I often woke up before you — I would curl up on the side of the bed, to peer into your bassinet just to watch you sleep. At a certain point in the morning, the sun would pour through the bedroom window and illuminate your bright blonde eyelashes — you looked like an angel Nora —a comparison people still and always make to this day. Those days and slow mornings were blissful, and restful — filled with sleep, comfort, cuddles, and restoration, for both of us.

Soon after you turned 3- months- old, your seizures started. We quickly found your largest, and most intense seizures, were out of sleep, or upon awakening in the middle of the night, or during your naps throughout the day. None of us slept much in those days — and when you slept, rarely could I close my eyes — I would lay down, but I was just waiting for the seizure to startle you awake. To this day, your seizures manifest out of sleep, but back then, we were just learning about seizures, sleep, and sedation (seizure medications.) You tried and failed so many medications before we found a combination that worked for you and minimized your seizures. In the early days Nora, the medical goal, and our deepest hope, went from “seizure free” to “please only one seizure per day.” By the time you found relief from the seizures, you were about 6-months- old, and you had accrued a new diagnosis: intractable epilepsy. This means your seizures, to this day, are uncontrolled.

When I recently drove you to the ER at Children’s Hospital, I called the on-call neurologist to let him know we were on our way. He agreed with the decision to bring you to the hospital, but as you likely noted, based on the tone in mommy’s voice, the conversation took an unexpected turn when the resident, suddenly indignant, explained to me, “What I think you are struggling with, is that this is really really hard, and sad, and when it comes to the worst diagnosis a child could have, intractable epilepsy is at the top of the list.” But as I listened, it became clear, to me at least, that it wasn’t so much what I was struggling with, but what he was struggling with: the unjust existence of intractable epilepsy in children.

It’s strange Nora, while “sad” is a piece of intractable epilepsy, I don’t cry when I’m with you — no matter what your body is putting you through, because, it’s almost impossible to be in despair when I’m near you. But when I leave your side, the weight of all you have endured and continue to endure, comes crashing down on me. Sometimes even, I crumble beneath the weight of it all. And when you go days without smiling, wake up pale, with no color in your tulip lips, or seizures interrupt your thoughts and motivation, and I see your little bright light go dimmer and dimmer, from medication, restlessness, or illness, it breaks my heart. And, it makes me angry.

The week we brought you home from the ICU, back to your cozy bedside bassinet, you often had seizure cluster after seizure cluster through the night, and I was still trying to feed you, but with the medications, and the seizures, this was hard too. One night, I woke up to what must have been a dream, or delirium from lack of sleep: Jesus standing at the foot of your bassinet — praying. In the dream, and surely it must have been a dream, I sat up in a fit of indignation, but when he continued to pray, and pray, and pray, I laid my head back down on my pillow, and perhaps for the first time in days, we all slept in peace. I don’t know how the resident, or any person, makes peace with epilepsy in children, and I don’t know if I’ll ever know deep, peaceful or abundant sleep, but I do know when I remember this image of Jesus standing near you, God with us, I can close my eyes and breath — deep and full — and drift into something like slumber.

All my love, always,

Mom

A Nora Update

A note on posting day: thank you for your thoughts, prayers, and encouragement following last week’s Nora update. I am so relieved to tell you, since my last post, we have noted significantly less seizures and questionable seizure events. While Nora continues to have clear seizures, and is requiring rescue medication throughout the week, and is struggling with drowsiness and fatigue, she is significantly closer to her baseline. We are encouraged to see her having more strong, alert and stable moments. God willing, she will slowly start the process of returning to her school campus ( 1^st grade!) over the next few weeks. We would love you to keep her in your thoughts and prayers. I will continue to share updates on Nora’s health with each upcoming wellness post — thank you for thinking of our girl!