I published my last blog post a year and a half ago, just days after our world turned upside down (again), when we learned that our son, Isaac, has PANS. If you are not familiar, as I wasn’t, PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. It is a devastating, life-altering illness. This post is in honor of PANS Awareness Day and in honor of Isaac.
“Brain on Fire”
You may have heard of the book, Brain on Fire, by Susannah Cahalan (Simon & Schuster, 2012), a #1 New York Times Bestseller. I’d heard of it before but didn’t read it until earlier this year. It is fascinating, especially knowing what I know now.
PANS is basically a childhood cousin of the rare illness Cahalan experienced in her 20s, which left her doctors and family perplexed and made her think she was going mad. Cahalan made a complete recovery. That is my hope for our Isaac and for every child affected by PANS.
Here’s the short version of our story.
Isaac was seriously ill when he was four years old, in the fall of 2012. He spent seven days and seven nights in the hospital with the flu, pneumonia, RSV, and asthma. He appeared to recover completely, but in the weeks and months that followed, his “behavior” and participation at school took a dramatic downward spiral. That version of Isaac became our new normal over the next seven years, with some unexplained periods of reprieve (what we now know is the relapsing/remitting course of PANS).
We already had an underlying diagnosis and assumed, as did our doctors, that all of the symptoms we were seeing were tied to Isaac’s genetic difference, which we identified when he was 15 months old. The connection between the viral illness and the onslaught of neuropsychiatric symptoms was only visible to us in hindsight. Isaac was finally diagnosed with PANS in February of 2020 by a physician versed in PANS/PANDAS/AE after yet another prolonged upper respiratory illness followed by an unmistakable relapse in behavior, volatility, and OCD.
Isaac is still in treatment for PANS, which in our case includes Amantadine (an Rx typically used for Parkinson’s patients that targets the basal ganglia region of the brain), a variety of anti-inflammatory supplements, a very strict diet, and monthly in-hospital IVIG. We had to fight like H-E-double hockey sticks (as Isaac’s 9 year-old sister, Gillian, would say) to get coverage, because insurance, and the medical community as a whole, has not caught up to best practices for what is still a relatively new diagnosis.
Not uncommon; uncommonly diagnosed
PANS is a complex immune-system disorder that too often flies under the radar as “behavior problems” but is actually caused by inflammation of the brain, triggered by a virus or other infection. PANS is not uncommon; it is uncommonly diagnosed. It is estimated that PANS affects one in 200 children/youth, which means there are kids at nearly every school who are suffering from it, whose families and teachers may not even know.
Isaac already had an underlying diagnosis, which made PANS even more challenging to identify, but “typical kids” can develop it, as well. It is a treatable disorder but sadly goes undiagnosed in many cases because it is not broadly understood in the medical community and beyond.
I’d like to help change that.
PANS Awareness Day
October 9 is PANS Awareness Day. Our family has been impacted profoundly by this disorder. This event is just the beginning of my mission to share our story and make PANS a known entity. Please follow my blog and Facebook page to see how you can join me as that mission unfolds over the next few months.
And in the meantime, please learn more about PANS and help me to spread the word. Diagnostic criteria and treatment guidelines for PANS/PANDAS are available through the National Institute of Mental Health (NIMH), and there are some excellent resources online through www.Aspire.care. Thank you, friends, for learning with me, sharing this important information, and being part of the change.
Diagnose and Adios. It’s a phrase often associated with neurodegenerative disorders and children with special needs. I first heard it a year or so ago from a neurologist, a friend, who had just diagnosed one of my older family members with Alzheimer’s disease.
She was saying it in a sympathetic vain, lamenting the sad reality that (in some cases) there’s not much doctors can do to help their patients beyond identifying the problem and perhaps slowing the rate of disease. And that’s only if the patient is willing to receive treatment, which many are not. Families come to the doctor’s office to see what they can do to help their loved ones, only to be sent away with a weighty diagnosis and best wishes.
In some cases, the doctor is the problem, true. But in many cases, the doctor’s hands are tied. In any case, it’s an unfortunate turn of phrase. And in this case (or this post), there’s an added twist.
Diagnose and Adios
I often think in titles. That’s a writer for you. This title came to me soon after I finally sat down and started writing about what’s been heavy on my mind for the past few weeks.
Since I started working on my blog in earnest, around August of last year, we have received two novel diagnoses for Isaac. One in September that was hard to swallow, and another in late February, an odd balance between kick-in-the-gut and welcome revelation. There was no way for us to know, when I “went live” with Gray Colored Glasses, that in just a few short months we would be in the place we are now.
And I’ve been sitting with the reality for the last two weeks, maybe longer, that there is no way for me to do what I set out to do with my blog, at least not in this season of life. Diagnose (my precious son), and Adios (to my blog).
Yes, friends, this is a “signing off for now” post. Whatever my dreams of being a successful writer-blogger, a real contributor in the realm of thoughtful parenting and adult life, even–dare I say it–a social media influencer, advocating deeper understanding, awareness, and compassion…my family’s needs supersede them all. And that’s coming from a good feminist, too.
I love my family with all I’ve got, and I just happen to have a child who needs me more than most children need their mamas. Anyone who has such a child knows that it affects every aspect of your life: work, home, health, social patterns, family relationships. Some of these things, I cannot let slide. The blog, I can. Diagnose and Adios.
Who knows, I may still post from time to time. But I can’t commit to it the way I’d intended. I expected to be posting at least twice a week, which dwindled over time to once a week, then once every two weeks. Then it became something I just couldn’t keep up with at all. I’m sad, because I really wanted this to happen and I have thoroughly enjoyed building this community. But I have to let myself off the hook, even if it’s an imaginary hook of my own creation.
A word on Isaac
I’m not ready to share the diagnoses by name, as I’m sure you will understand. Maybe I will eventually. Maybe not. I’m the Mom, writing my story, and there are aspects of that story that belong to Isaac more than to me. I have always tried to walk that fine line.
Isaac is and will be okay. He has parents who love him and will be with him every step of the way. If you know Isaac, as many of you do, you know he is a remarkable child, who overcomes more every day than most kids do in a year. He is strong and resilient and unphased by this new phase. He is and will be okay.
Receiving a diagnosis is not always bad. Both of the diagnoses are treatable and offer a new angle on improving Isaac’s health (and as a result, our entire family’s quality of life). So while the past six months or so have been deeply challenging, we also feel a new sense of hope and possibility. Like we have a rare opportunity to put back together some pieces of our life that have felt out of control for way too long. In many ways, we are rebuilding.
Thank you for your support
If you’re reading this, you are probably one of my best supporters. I thank you, all of you, who have read, shared, and commented on my posts. If you’re following Gray Colored Glasses, you will still receive an email if and when I post to the blog. I may also keep circulating some of my writing via Facebook and/or Pinterest, my go-to social media outlet. In fact, one of my favorite pet projects over the past few months has been setting up my business page on Pinterest, which I’d love for you to follow.
And I am still committed to finishing Everyday Miracles: A Storybook Series Based on the Nurtured Heart Approach®, with two more books coming down the pike. If you haven’t already, you can check out my first two books, Saturday Surprise and Playtime Pickle, on Amazon. Whatever time I might have devoted to the blog, I will likely be putting into book three, which is currently in rough draft format, and later, book four.
Since you’re my “inner circle,” you’ll be the first to learn the title for book three. Wait for it…King of Swing, which I hope to publish by the end of 2020.
Lessons learned, and still learning
I am still glad I took this leap. I have learned far more from this process than I even imagined, from building my own site to the evolving rules of SEO, to the algorithms of Facebook and Pinterest, when to post for highest views, how to create original pins, and more. For me, one of the most important takeaways is just knowing what it takes to host a blog. I could have guessed what it would be like, but I really didn’t know until I tried.
I went back and forth for a long time, several years actually, over whether my idea, Gray Colored Glasses, should be a blog or a book. When I started the blog, I still wasn’t sure. I’m not sure now, either. But if and when the time comes that I can devote more attention to my writing (and it feels good to do it), I’ll have a far more informed sense of blogging as a medium. I have tasted it, and I liked it.
For now, though, it’s adios. I keep thinking of a quote I saw on Pinterest several years ago that has stayed with me. Theologically, I might take issue with it. But in my particular experience as a mom, I choose to embrace it. Maybe you’ve seen it, too. “Your greatest contribution to the kingdom of God may not be something you do but someone you raise.”
I have said for years that if I had a job I would have lost it, many times over, for all of the obstacles and interruptions we’ve endured. It is clear to me what my work is right now. And there’s something very peaceful about clarity. I am ready to let go, to exhale. And the more I can let go of, the better position I’ll be in to hold my family together through this rebuilding season of life. Diagnose and Adios.
It’s tempting to be resentful, but I will be grateful instead, for fewer obligations, and more time and energy to focus on what is right before me. That is a luxury not everyone has, and I don’t take it for granted.
Adios is not forever. But it is for now. Sincere thanks, friends.
If I weren’t already a fan of simplicity, this past week would have put me on the fast track. Last Sunday, we took everything out of our attic to make way for the installation of two new air conditioning units. Then, we moved to my mom’s house for the week, because we’re also addressing a few things at home that are affecting our son’s health, and our kitchen is temporarily out of commission. (Say no more, you may be thinking.)
I am not one to hoard. I try to let go of things when we’re finished using them, whether we offer them to family members, take them to resale, or our preference, give them to charity. And I make serious efforts not to buy items we don’t either love or truly need. Nevertheless, what I thought was a modest pile of storage bins and boxes up in the attic added up to A LOT. Not to mention all of the clutter in the kids’ rooms and in other pockets around our home.
And staying at my mom’s house has truly pushed me over the edge. Like many people (maybe even some of you, God love your hearts), Mom is not one to let go of anything. There is something around every corner here that boggles my mind, be it boxes of old rewards, disposable kitchenware (which is never disposed), or an endless array of knick knacks. I find myself wanting to return to our home and give away ALL of our possessions. I am DONE with STUFF!!!
My love affair with simplicity
Sure, when we’re back home in a matter of days, it will be harder for me to practice my righteous war on clutter, because the things we own can work their way into our hearts, especially when they are attached to special memories or people. But whatever blossoming love affair I’ve had with simplicity over the past 15-20 years just got serious, friends. I am on a mission.
In my early professional years, I was commissioned to write a worship service on the topic of Consumerism. (See Consumerism: Worship Service, published by the Center for Christian Ethics at Baylor University in 2003.) I bought several books on the topic, including one on simplicity, and I was truly captured by this alternative outlook to our excess-driven culture. From that time forward, though it may not be apparent to the average onlooker, I have tried to practice simplicity in my daily life and routines.
Simplicity: Life-Changing Magic
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For me, simplicity has much in common with de-cluttering, organization, and tidying, all of which get me a little excited on the inside. I have read Marie Kondo’s fabulous little book, The Life-Changing Magic of Tidying Up, twice. If I lived by myself, I would have carried out the process in its entirety, no doubt. But I have what’s known as children. And a husband. And a dog. I have a blog to write. And hopes and dreams. You understand. You have these things, too. Sometimes it feels completely overwhelming.
And this is where I get stuck. Life is so complicated. How will I ever find the time to simplify? But maybe the better question is this: What is it costing me NOT to simplify?
The answers are many, and they are profound. But for the sake of simplicity, I’ll narrow it down to three. (See what I did there?)
Not simplifying is costing me…
The peaceful home I so desire. Seriously, this is the number one thing on my list of wants. I know it would change my life. And I know it’s within reach. It will take time and commitment. But it is possible. And moms, we all know it’s true: if it is to be, it is up to me.
Mindful attention to work, hobbies, and leisure. Having stuff all around us, even if it’s organized into neat stacks (guilty), keeps us distracted and agitated, our attention divided. I may be working on one project only to be distracted by another, or playing with my kids only to find myself organizing their toys instead (guilty again).
A legacy I want to give to my children. Just like grownups, when kids are surrounded by “stuff,” they can’t focus. Not long ago, I read an illustrative story about a child whose grandmother noticed that he loved playing with one particular car. She then bought him ten more cars, just like the one he loved. And he stopped playing with the cars altogether. Too much of a good thing is still too much. I want to teach my children to value what they have and to understand what it means to be content.
Simplicity: living with intention
I don’t know about you, but for me, these three reasons to simplify are very compelling, because they touch my life every day. With these simple things in mind–creating a more peaceful home, where I can give mindful attention to my work and play, and pass that beautiful legacy on to my children–I will be digging in over the next several weeks and bringing my family along with me.
I’ve already asked my children the question, “If you could only keep three toys, what would they be?” (“Cars” and “American Girl Dolls” count as everything in that category. I’m not crazy.) And we very well may keep more than three, but I want them to come along on this journey with me to a more intentional way of living.
I will do my best to chart my progress and share lessons learned, and I might even include some pictures! In the meantime, be sure to check out my Pinterest boards, “Simplicity: Quotes and Tips” and “De-cluttering: Home and Mind.” And if simplicity is your jam or you find yourself inspired by this post, please comment below with your pointers and stories!
I’m not sure what brought you to this post, whether you need this message for yourself, for your children, or for people you meet on the street, but here it is: Your best is enough.
I know there are rotten people in the world, who spit gum on the ground, double park their cars, and truly don’t care about others. But I’m not talking to them. I’m talking to you.
You wake up early every day to make your child’s lunch. You drive all over creation to get your kids to school, yourself to work, your errands run, and activities attended. Many of your days, you end exhausted, wondering if your efforts make any difference at all.
And then there are seasons like this one, with more trials than usual. With so much out of your control, you feel completely overwhelmed.
Hear these words: You are doing your best. And your best is enough.
This is true of kids, too. Many of them. Sure, they can be patoots now and then, but most of the time, they are doing their best with the skills they have. Sometimes, kids are doing their best even when they’re melting down. And they might need us to recognize it for them.
One of the best stories I’ve heard recently was from another mom of a special needs child at Isaac’s school. She was out with her teenage son, a boy on the autism spectrum, and he was struggling. When a store clerk met him with an unforgiving response, the mom said simply, “He is doing the best he can. I hope you are, too.”
I might not have the wherewithal to say what she did in that moment, though I admire her for it. But sometimes I need that reminder myself. My child is doing his best, and his best is enough.
We’ve all heard the saying, “Be kind, for everyone you meet is fighting a hard battle.” (Click here for quote attribution.) And it’s true. I am. You are. Our kids are. That store clerk probably is, too.
I’m not telling you anything you don’t already know. But I may be reminding you of something you needed to hear again. So be kind, friends. To people you meet. To your kids. And even to yourself. Your best is enough.
So many New Year’s Resolutions come down to one thing: how to take control of your health. Whether it’s a commitment to eating better or exercising more or exercising at all, I would venture to say that most of us include something about health and fitness in our yearly goals.
We all know the statistics about how quickly New Year’s Resolutions become judgments of our failure. We set out with aspirations to become a new person only to find ourselves returning to the same habits we’ve always had. The old maxim rings true: Wherever I go (or whatever I resolve), there I am.
A personal success
A couple of weeks ago, when Todd and I were discussing our New Year’s Resolutions for 2020, he said something that surprised me: “You don’t have to put exercise on your list of New Year’s Resolutions, because you’re already doing it.” And he was right. I made it a habit last May, and I’ve been exercising almost daily for eight months now. At the same time, I’ve been eating nutritious, healthful food, and significantly reducing the amount of meals I eat out.
I didn’t even set out to lose weight. I set out to clear chronic cystic acne and to improve my overall health. In the process, however, I lost 17 pounds (7 in the first 10 days), and at last count, something like 7+ inches. I’m happy to report that my skin is better, too. And not that I can guarantee this kind of outcome for everyone, but I’ve also tapered off antidepressants for the first time since the birth of my second child and terminal diagnosis of my beloved dad, eight years ago. So how did I do it?
A second education in food
The long story is that our winding path with Isaac’s challenges has lead us to explore some things over the years that we may not have otherwise tried (or even heard of, for that matter). When there is no set roadmap for helping your child, you become more open, more curious, more involved in addressing your child’s health than you might be if his or her development were more typical.
While this is not a path we chose to be on (and not one we would wish on others, as it’s hard on both the heart and the pocketbook), there is no doubt we have built a storehouse of knowledge about health along the way. And it’s become a huge part of who we are as a family and the day to day choices we make.
I’ll save our adventures in dieting for another post (I’ve learned to cater my cooking to gluten-free, GAPS, Paleo, dairy free, and anti-candida, some for short stretches, some long). But here’s one of the most important principles we’ve learned in our second education in food: believe it or not, 70% of our immune system is housed in our gut. That means that if something in our body is ailing or out of whack, there’s a high chance something is wrong in our diet. And when we remove foods that are inflammatory and replace them with more healthful, nutrient dense foods, we may see symptoms of disease disappear entirely.
More than skin deep
So in February or March of last year, when my complexion started to crash, the first thing I thought about was what in my diet might be disrupting my immune system. Isaac was starting to have acne, too, and while I knew we shared the same genes, I also knew that we share the same food.
We removed gluten from our diet long ago in hopes of changing Isaac’s behavior for the better, a path many families of children with special needs explore. What we didn’t anticipate was that six months or so into eating Paleo (which is entirely grain free, thus also gluten free), Isaac would barely be having symptoms of asthma anymore. At all. Food literally is medicine.
When I was young, I’d had terrible trouble with my skin. It took three rounds of Accutane to set it right and an occasional treatment of Spironalactone afterward for adult acne. I had truly battled troubled skin in my youth and early adulthood, and I was not willing to welcome this problem back into my life. Despite making dramatic changes several years ago, I’d become complacent about my diet more recently and was relying too heavily on convenience foods and eating out, which is an easy pattern to fall back into, given the world we live in. I couldn’t pinpoint what was causing the flare ups, but I wanted it to STOP.
I knew I would have to play hardball, with food.
Take control of your health – my starting point
Because of prior experience, I felt confident that I could effect change, both for Isaac and for me, by changing what we ate. I’d recently learned of Mark Hyman, MD, an internationally recognized leader in functional medicine, and decided to see if he’d written anything about treating acne. What I found was the article below, which Dr. Hyman notes is his most-clicked blog post ever (so clearly, I’m not the only person who has faced this battle):
This article was my starting point. I’d already eliminated gluten. I would follow Dr. Hyman’s guidelines and eliminate sugar (again) and dairy next. And I decided to order his book, The Blood Sugar Solution 10-Day Detox Diet, and follow it as closely as possible. By this point, it was May of 2019, and I was ready for change. It’s time, I told myself, to take control of your health.
The 10-Day Detox Diet
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Everything above is the long story. The short story is this: on May 6 of last year, I started following the program outlined in Mark Hyman’s book, The Blood Sugar Solution 10-Day Detox Diet, which includes a thorough examination of food along with a holistic plan to “reset” your health through a combination of diet, exercise, and stress management. If you follow the program, you WILL experience change, enough so that you may adopt some of the habits for good. That’s what happened to me.
In The 10-Day Detox Diet, Dr. Hyman encourages readers to take a retreat-like approach to the 10 days, prioritizing our health over everything else. Most of us can’t take a true 10-day retreat. I certainly couldn’t. But we can commit to reordering our priorities for 10 days, focusing on our health above all else…and still keep our life (job, kids, household, sanity) afloat. I know we can, because I did it. If your health is out of control, you owe it to yourself to do it, too!
10 days to take control of your health? Totally worth it.
A holistic approach to health
The 10-Day Detox Diet is more than just an eating plan, though it is that, too. It is a holistic approach to health, including food, exercise, sleep, and reducing stress.
Food and exercise
In addition to an enlightening exploration of food and food culture , The 10-Day Detox Diet offers a wealth of delicious recipes, from simple to complex, some of which stayed on my weekly rotation long after my 10 days passed. It also includes a journal, where you answer questions around your food habits and hangups, to help you change not only your eating but the way you think about food.
The “diet,” which you know by now is far more than a diet, also requires that you exercise for 30 minutes every day, preferably in the morning. As someone whose yoga pants had never been to yoga, who hadn’t worked out since the months before my wedding almost 15 years prior, this was truly daunting for me.
I settled on walking as my exercise of choice, and even then, I didn’t know if I could get up in the morning for 10 days in a row to check this box off my list. And I certainly didn’t think I’d keep doing it after the program ended. But here I am, eight months later, still walking nearly every morning. It’s like a gift I give myself to start the day. (See post, My Morning Walk, with Robin.)
Sleep and stress reduction
And finally, two of my favorite requirements of the “diet,” prioritizing sleep and reducing stress.
The minimum requirement is to sleep seven hours per night, with eight being even better. In my case, this had less to do with waking up earlier and more to do with turning off the phone, the television, and my racing mind in time to get in bed, be still, and truly let down.
The stress-reduction requirement is to take a 20-minute “detox bath” every night, with a mixture of Epsom salts, essential oils, and baking soda. It felt almost odd to give myself such a luxury, but it revealed to me in clear contrast how very little I typically do to help myself relax and let go of the stresses of everyday life (something every mom must do!). And as a bonus, the bath helped me decompress enough that I fell asleep more readily and more quickly.
The keys to my success
Each of these realms–food, exercise, sleep, and stress reduction–is important when it comes to our health, but giving weight to all of them, together, for a 10 day period, is powerful. It truly changed the trajectory of my health, and it can do the same for you.
The program outlined in The 10-Day Detox Diet isn’t easy. Quite the contrary. But I succeeded with it for two primary reasons.
1) I already believed in food as medicine. I had confidence that I would see results if I followed the protocols. And I did.
2) I had a deep-seated motivation. Your motivation to take control of your health might be different from mine, but you must have one. Mine was getting rid of acne, which had already plagued me as a youth. I WAS NOT GOING BACK! What is yours?
It’s one thing to push ourselves to achieve a goal and something very different for a goal to pull us in the direction of success. Over this 10 day program and for many months to follow, my motivation to clear my skin literally pulled me out of bed in the morning to walk off stressors, prepare nutritious meals for the day, and make my health the priority it should be.
What pulls you?
And what about you? What motivator is so powerful that it could literally pull you out of bed in the morning to take control of your health? Identify that, and you are far more likely to succeed at this or any program you undertake.
I am in a very different headspace since following The 10-Day Detox Diet. And I’m thrilled by the changes I’ve made. I hope for the same success for you. I’m sharing my story for anyone who may feel stuck or complacent or in downright crisis to let you know that it is possible to take control of your health. You can do this. You are so worth it!