Life and Lims

How to approach faith when depression clouds the mind

Thanks to this title, I bet you all think I have some magic solution to this conundrum. But ha! I don’t. This is where I’m writing to open it up to a discussion.

I have written just once before about spirituality and a connection to God as it relates to depression/mental health problems, and my conclusion was and stays the same: my deep faith in God and knowing that He is there and ready to help and support me carries me through the toughest times, but I don’t feel it at the toughest times very well. It feels like a thick cloud has covered the heavens and all I have left are memories that God is there.

Where does this leave me when I know we’re supposed to lay our burdens at the feet of Jesus? That we can’t carry them ourselves, that we absolutely need divine help? When I am depressed, I don’t feel much except distance: from my family, friends, those I logically know support me but, as I’m in it, feel far. I’m muffled. This distance especially takes in God. It can be difficult for me at times to feel Him because I tend to be a deep thinker. It’s hard to make SENSE of it: how in the world does He do what He does? How can He possibly know ME, just me, so well that he’s really there for me all the time, any time I need Him? He has billions and billions of children He loves as much as He loves me. How can I matter so much when I’m one tiny speck? It baffles me, even as that logical part of me can look back and tally up times I have no doubt He was doing things for me and supporting me.

When others say, and I remember talks or scriptures telling me to do this, Lean upon the Lord, let Him take your burdens, and so on, I have absolutely no idea how that works when I’m depressed in a way I feel surrounded by cotton, my ears and mind just stuffed with it. He won’t take away the depression. I know that over years of experience. So how do I lay those burdens down when He won’t take them or make them feel lighter?

Midway through my life, I don’t have an answer to this question. I simply know that there are plenty of beautiful, joyous, strong times in my life, and the darkness, the aloneness, do take good, long breaks… Well, sometimes shorter, sometimes longer… Is that hope, that knowledge from the times that I get to be above the clouds and feeling those rays of God’s love, enough? Is simply having faith and experience to know that tough times don’t last the best I can do in terms of laying down my burdens and showing faith?

And… discuss.

Time to update those high school reading lists

My third daughter has just started her senior year in high school, with one of her classes being Advanced Placement English literature. She told me that she and her classmates get to choose some of the books they will read over the course of this school year and showed me a list of about 80 books that are mostly what I would call “classics” that are typical for high school or college reading, plus a few newer books that weren’t around when I was in high school. I’d say most of the newer books seem to have been chosen to represent writing from other countries and cultures. (The books are listed with the author’s name and then the author’s country/ethnicity in parentheses.)

Being an avid reader myself, I have plenty of insight to give my daughter about the list and what I think is good and that she would enjoy and learn from. Honestly, right away I just scratched right through Faulkner and Hemingway and Melville. I read several of those authors’ books and was bored silly. I won’t dispute that they were “great writers,” but there now have been PLENTY of other great writers since them. Can’t we include those and cut back a bit on these “Great American Writers”?

One note: I think that some of the newer book choices on this list, limited as these inclusions are, were decent choices. But I was full-on scratching my head over someone’s decision to include The Memory Keeper’s Daughter among maybe 10 or 15 “newer” books. I did read that; it was popular when it first came out as what I would call a “book club choice.” Have I heard of anyone reading it since? Nope. I can only imagine that it was included because a character has Down syndrome. But can we not find other recent books that include someone with a disability, and in this case, not as a plot point that’s intended to pull at heartstrings in what I call a cheap shot?

I know Shannon Hale, a bright and amazing writer and wise observer of many current goings-on, has written about this topic before (in addition to repeatedly talking, rightly so, about how we need to do better to encourage boys to read books that have female protagonists and stop referring to “girls” and “boys” books), but I haven’t been able to find any of her recommendations in my Google and Twitter searches so far today. So until I do, I will just reinvent the wheel a bit and make a list of some excellent books that would be great not just for showing the authors’ excellent skills with the pen (… or keyboard) but that open up windows into parts of the human condition that haven’t been explored in the older books.

(Note: I have reviewed these on my website, Rated Reads, with detailed information about the books themselves, plus content information. Links are included for those on Rated Reads. Most of these are “mild” or “moderate” rated for their content, though a few are “high”.)

The Shadow of the Wind, by Carlos Ruiz Zafón. Not only is this book a page-turner as a mystery and gothic story, but it provides readers with some insights into post-civil war Spain, which many kids will never learn about in history. The writing is glorious; the notion of a “Cemetery of Forgotten Books” where books people have forgotten about are lovingly kept will thrill anyone who loves books.
The Unwind series, by Neal Shusterman. These YA novels are sophisticated and thought-provoking and sure to spark conversation. The premise? Society has decided not to allow abortions but to allow parents to choose to “unwind” their young teens if they are unsatisfactory. These kids are killed humanely and their parts donated to those who need them. What’s particularly appealing to me is that the books don’t seem to have a particular agenda; they simply explore a strange “solution” that a society has come up with regarding the contentious issue of abortion.
Into Thin Air, by Jon Krakauer. This nonfiction account of a year that was particularly deadly among climbers of Mt. Everest is gripping and educational. If you have kids who think nonfiction is boring, wait until they read this. I was skeptical myself, but it hooked me so much I’ve read five or more other books on related topics. An excellent example of narrative nonfiction.
The Thirteenth Tale, by Diane Setterfield. Because this is simply the best gothic book of the past 50 years. Sure, read Rebecca and Wuthering Heights, but Setterfield’s novel has yet to be matched since its publication in .
The Spirit Catches You and You Fall Down, by Anne Fadiman. This is another nonfiction book that is written in a format that is easy to follow. It teaches readers a bit among the Hmong culture, the language and beliefs. It’s particularly useful because it shows the clashes of American and Hmong culture (not to mention how even English-speaking Americans often do not have adequate communication with those in the medical profession) and how the grave misunderstandings left a young girl dead. These are the kinds of books we need to read more of in the U.S.
The Immortal Life of Henrietta Lacks, by Rebecca Skloot. Oooh, more nonfiction. All of the nonfiction books I’m referencing are easy to follow and compelling reading. Here, readers get to learn about medical research and how little autonomy blacks were given in their own medical care in past decades. There’s culture issues, medical issues, genetics … all fine reasons to recommend this book.
The Warmth of Other Suns, by Isabel Wilkerson. My last nonfiction. This book may seem long and daunting, but it’s compelling. The author explores the history of migration of blacks from the South to the North and West from 1915 to 1970, making a huge change in the “face of America.” She uses the device of focusing on a few individuals and telling their stories in detail to represent the larger migration of 6 million people. Excellent research and writing.
The Alchemist, by Paulo Coelho. This slim novel has been published in many languages and sold millions of copies in the past 25 or so years since it was first published. It’s a sweet fable that allows the reader to think about the meaning of life and to follow one’s dream. It’s a nice choice for students because it is short and accessible, rather than daunting in length or topic.
Anything by Amy Tan or Lisa See. I’ve read quite a few books by these two authors, whose novels explore the experiences of Chinese women, either wholly in China or as migrants to America, and often through several generations, showing the changes that come about through new and different opportunities.
Any of Dear Martin, The Hate U Give, I’m Not Dying with You Tonight. These are young adult novels written about topical issues that blacks are facing, from a teen perspective, in our current culture/environment. I admit I am woefully under-reading in this genre.

This episode of depression is just a gray dog

I’ve heard a few times that Winston Churchill experienced depression and referred to it as his “black dog.” It may or may not be completely accurate, but it has become one of those anecdotes that’s oft repeated. I’ve had some black dog times throughout my life, where the giant mutt mistakes me for a dog bed and nearly suffocates me. But I’ve also faced a gray dog often enough, who is mostly content to sit next to me and put his big head on my shoulder.

I am working on trying to pull out of a current visit, shooing away this stray dog who isn’t welcome but manages to barge inside my house and settle in for a while now and then.

pic-8 — This dog just about captures my idea of the size and style of dog I imagine. **Courtesy of Bark Post**

I feel sure many people have experienced gray dog times, whereas not everyone has faced the big black dog. I’ve struggled with mental health for decades and am what I consider to be in mostly good shape at this point. I’ve got it managed with good medication and a good psychiatrist and therapist. But I think that means I’m a bit more susceptible to a down time that might not bother others so much if they don’t have a predisposition to depression or other mental health challenges.

So when I lost my job a couple of months ago, it just sent me into the fog. I knew it would be a danger and I knew I had to face head-on the grief of losing something I really enjoyed and I was very good at. But I’ve still had to push on, moving through what feels like mud many days just to keep up with all my responsibilities. I still have three children at home, who are busy and keep me going, and who depend on me emotionally and for taxi-ing and providing nourishing sustenance, among many other things. So I’ve kept on getting up and getting moving, pulling myself to the grocery store, to the errands, taking the girls to their events and practices and so on. Providing a listening ear, an embrace, love.

A very unwelcome side effect of my gray dog visits is that I tend to eat more (gotta eat for me and for a huge furry animal, after all!). I have struggled with emotional eating my whole life, and I have yet to get past it, despite much awareness and much investigation into ideas of ways to combat it. I lost 44 pounds last year and now after the past few months, I’ve regained a lot of it (not all, yet, though!). That, of course, just makes me feel worse. One horrific complicating factor, unfortunately, is that the society we live in does not look kindly on fat, on weight gain (though we cheer others on whenever they lose weight, for any reason; heck, I enjoyed all the compliments when I lost weight), on what is supposedly an outward manifestation of personal weakness. I feel weak, and now I feel others judge me as weak, but in a negative way, not a compassionate way. And I feel doubly bad that I look so weak because society at large is wicked on this count.

But here’s the kicker — as much as I’ve said to those close to me I’d love to have a sign that warns people I come in contact with (and who likely are needing something, expecting something, from me) that I’m not my usual kick-butt, get-stuff-done-with-a-vengeance, talented, skilled, intuitive, amazing woman, and to just give me a little leeway, breathing room; to lower their expectations, to not ask for that favor or expect me to do what they need me to do; I almost DO have one. That weight gain is a pretty good bet I’m eating emotionally, and that means I’ve got a lot going on in my heart and head, and I need some gentleness, some TLC, some hugs, some quiet time, some understanding. And to not ask anything but “would you like to go to a spa?” or “let’s get you a pretty new dress that fits just right and looks awesome” or something similar.

But pretty much no one knows, or believes it, maybe, because I pull off really well that appearance of having it together. Because I don’t have a lot of choice otherwise. And I try to quietly tell people when it’s appropriate that I’m not my best and I’m working on getting back to my better self, because I do want some understanding and I want to be honest. I do know I’ll feel better; it’s just a matter of time, and I can reassure others of this. But I do want to share, in the meantime. I do want to be open.

But I CAN’T FORCE IT, force being better, being at the end of that rough road and back onto a smoother one. And neither can anyone. I have such compassion and empathy for those who are struggling with any of these unwelcome dogs, darkest of midnight black or a paler dove gray. Because anyone who is outside doesn’t get that you can’t do the simplest of things. You cannot say, “But can you just do ____?” Because any of those “just” things are somehow far too hard to do when you’re in fog.

I’ve not been going to the gym for two months. I got sick twice (that did NOT help this whole matter) and didn’t feel well enough. I always enjoy my workouts. But now I’m out of the habit, in small part, but I’m also stuck in the mode of “I can’t get GOING” on many “extra” things that aren’t absolutely necessary every day. I am denying myself something I enjoy and that helps my health and my weight and even would help improve the depressive symptoms. ! But I can’t make myself do it. My brain is stuck.

I’ve also not been using my CPAP machine. I only needed it once I’d gained a fair amount of weight after my daughter got married (my last real gray dog episode, a bit under 4 years ago), and it did help. But then last year I lost weight and I felt pretty good without it. I know now I need it again. Here is the exchange I have had in my brain a number of nights:

Me: Just put the thing on your head.

Brain: Nope. We are resting comfortably, and reaching over and getting the thing that’s two feet away on the nightstand would be too much effort and then we’d be too worked up to get to sleep.

Me: We need this. It’s so close.

Brain: No. Toooo tiiiired to reach for it. It won’t make a big difference anyway. Why bother?

Me: This is ridiculous. It’s right. there. Good grief, get it already!

Brain: No thanks. Just go to sleep. Maybe tomorrow.

Me: Ohhhhkay. Maybe tomorrow will work. Pfffttt.

So when my doctor tells me, “You need to use your CPAP,” I nod and agree and tell her I’ll do it soon, knowing the mental hassle it’s going to cause. She will NEVER get it. Oh, and don’t get me started on how I have to brace myself when she notices the weight I’ve gained…. grrrr. That’s nowhere NEAR as easy as putting on a CPAP mask. And that’s ridiculously difficult sometimes, as you just read. I (kind of) grin and bear it through any doctor visit.

As I said, when I know that this one tiny, tiny thing, which seems so easy and so obvious to outsiders, is that difficult to actually execute (and this is simply one example of a number of other things I know logically I need to do and that would be good for me), I know that depression, whether it’s gray or black, is NOT something people can just pull out of on their own. Don’t ever say to someone going through this, “If you just…” Because it’s far more difficult than you can possibly imagine if you’ve not been through it yourself.

I managed to actually put on my CPAP two nights this week, so I’m feeling like I’m actually pulling out of the fog. The dog is showing hints it’s going to be heading out for a while. That’s very good news. One or two things get the ball rolling. But it’s on the dog’s time, not mine or anyone else’s. I’ve come to terms with this. And I guess that’s a lesson learned and it’s OK. It’s OK if you’re in this spot, too. I’m with ya.

My favorite books in 2018

Goodreads says I read 41 books this year. I’m going to pick 10 of my favorites, just because, hey, 10 is a nice round number. I’ll even helpfully divvy them up by genre. Interestingly enough, my favorites were fairly evenly divided among these three categories; some years, that’s not the case. I’m linking each to my review on my website, Rated Reads, where you can get the full review and my content rating on each.

So here goes:

Fiction

The 7 1/2 Deaths of Evelyn Hardcastle: On occasion, a book comes along you just don’t want to spend much time trying to describe because you don’t want to give anything away about the original way it’s set up. This novel about a murder with a “Groundhog Day”-like twist and a man trying to stop it from happening — even though it already happened decades ago — was just plain cool. I couldn’t put it down.

The Coincidence Makers: Here’s another book that’s utterly original and clever and about which I don’t want to give too much away. And it left me just sitting dumbfounded when I read the last page. I was in awe at the complexity of the story and how every piece fit together in ways I never saw coming. I thought the premise of the book was clever but I had no idea the direction the book would take, its tone and messages. The story had much to say about what love is, and I had to sit quietly and savor it all for a while.

Once Upon a River: Diane Setterfield’s third book doesn’t pack the surprise punch of what I consider a gold standard for gothic stories, her first novel, The Thirteenth Tale, but that’s OK. This story did have a feel to it of mystery, of the touch of the supernatural, but it’s more human and weighty, more well-rounded, and quite satisfying emotionally.

The Death of Mrs. Westaway: This was my introduction to author Ruth Ware, and I am a sucker for gothic tales (as is evidenced by my previous paragraph). The tale of a young woman in dire need of funds who can’t help but take the opportunity presented her to possibly finagle some from the estate of a recently deceased woman was good enough I’m going to be reading more of Ware’s books.

Young adult

Legendary (Caraval, book 2): The magical immersive game experience at the heart of this book and its predecessor promises/warns its participants that they will get swept away. That’s true also for readers. I lapped up every last little bit. Now awaiting another book in the set. Impatiently.

million junes

A Million Junes: I was moved by the loveliness of author Emily Henry’s The Love That Split the World, so I was eager to read this second book of hers. It’s a beautiful story about love and loss, about grief and vengeance and finally being able to let go. It’s said that the best fiction is the truest, and this story struck so many true chords. I loved the characters, their flaws and strengths, the wonderful heritage the main character carries with her because her father planted it in her through all his stories that were just a bit too outlandish to be completely true but somehow still were at their core. I loved all the bits of magic floating through the story while it still was grounded in reality.

Furyborn: In one era, a young queen with tremendous magical power brings her land to ruin. A thousand years later, a young bounty hunter is just trying to survive, but she gets pulled into a faction that’s rebelling against the ruthless leader of the empire. And the two women are somehow connected. I was blown away by this story. It raced along at high speed, and I could not put it down. The world of the book is fascinating; the two women are complex characters, facing complex dangers. The stakes are high and the action is practically nonstop through 500 jam-packed pages. I cannot wait for more; luckily, the sequel is coming fairly soon.

Nonfiction

I’ll Be Gone in the Dark: One Woman’s Obsessive Search for the Golden State Killer: A true story not just of a rapist and killer who terrorized several areas in California, but the writer who spent years digging into the story and trying to solve the case. The writer died before finishing the book, and the alleged killer was caught just this year, shortly after publication. Compelling reading.

The Library Book: The story about a fire that ruined hundreds of thousands of books in Los Angeles Public Library, but also just a paean to books and libraries. Irresistible for book lovers, and doubly good in the masterful hands of writer Susan Orlean.

The Future of Humanity: What will happen when our planet (sooner rather than later) becomes uninhabitable? Michio Kaku explores the possibilities open to us in the next century and more. If you’re a science junkie, whether it’s astronomy, space travel, robotics, quantum physics or technology, this book is an absolute treat. Thought-provoking and even riveting.

Down syndrome PLUS other challenges, like mental health

I’ve already blogged about having an adult daughter with Down syndrome and how that’s so much different from having a younger child with DS. It’s tougher in many ways: the gap between that child and your other non-DS kids, in addition to the gap between that child and most everyone else, is so much wider than it was when they were little. You’re used to the different life, sure, but there are still plenty of times you’re reminded how things would be if that child didn’t have DS. As your other children become adults or older teens, that gap is starker.

What also makes life more … eh, interesting … is when that child has other challenges on top of all that DS does. We as a family have been so blessed that our daughter, unlike about half of people with DS, never had heart problems. She didn’t require surgery. I have always been appreciative of that. For us, however, what’s been tough has been my daughter’s emotional health challenges. I’ve blogged lots about my own mental health, so look at all that for what I’ve experienced personally. Marissa has exhibited a lot of mood swings and meltdowns for probably about five years, and those have gotten so much more frequent and intense the past six months or year. Over a few years, the doctor and I have tried Prozac on her to see if that could help her feel a little less out of control, but it hasn’t helped. Now, however, with her just having such a hard time, I’ve been trying to figure out just what we can do from here.

Here’s the thing: I’ve already written about how difficult it can be to find a good mental health provider, particularly a medical doctor — psychiatrist — who specializes in these things. It’s hard for EVERYONE who finds themselves in need of a psychiatrist. There simply aren’t enough to address the need. That’s particularly the case in smaller communities or other underserved populations. And it’s a tragedy.

Add that to the difficulty of finding someone who has the extra skill to work well with someone with a learning disability, for whom it is much more difficult to understand and express the nuances of things they’re feeling, and the challenge can be overwhelming.

I’ve felt overwhelmed by various emotions: frustration, sadness, some anger, helplessness, inadequacy … the list goes on. I feel bad for my daughter because I know from personal experience (years of it!) how it is to feel so taken over by your emotions. I also know it must be particularly confusing and scary and sad for her. But then when it just goes on and on, day after day, and the things I try to do just don’t seem to help much, I feel frustrated and angry and depleted and just ready for it to STOP. For at least a little while.

I took her back to her regular physician a few weeks ago, in desperation, hoping that he and I might be able to come up with something to help. Just a start. I told him what I’ve struggled with personally and what medications have now helped me for the past two or three years. I told him how few resources there are. I told him, “I know this isn’t really in your wheelhouse, but…” Luckily, he is a good and kind man who is happy to listen and consider ideas and research them, and I trust him to do what he can. He said he’d look into some things and get back to me.

Meanwhile, I had my own check-in with my psychiatrist (well, she’s technically a nurse practitioner who specializes in psychiatry and she is FANTASTIC), who is at a clinic an hour away from here (and that my insurance doesn’t cover, so I pay out of pocket for each visit: $100 each time I have a check-in). I told her about my daughter and asked for some ideas. I felt it was the best option for M to go to this place, since I know they’re good and they specialize in this. But I was thinking they weren’t taking new patients, which wouldn’t help me at all. Luckily, I had taken her there maybe five years ago, when she wasn’t doing too badly, so I was able to get her in again. She has an appointment in two weeks.

Meanwhile, she is having blow-ups and meltdowns multiple times a day, sometimes, and it’s a strain on me and especially on her youngest sister. I’m just holding on until that appointment. And even then, these things take time. It’s going to be more of a challenge to help her than to just be the patient myself (that is tricky enough, believe me).

I am aware often of the multiple challenges people face. Children and adults with DS, like anyone else, have various needs and overlapping issues. It can just make it that much harder to deal with each of those things. I have such sympathy for the individuals with DS who have these needs, and I definitely understand the needs and feelings of their parents and families. Each of us is going through a unique mix of trials and challenges, and many of us go through those without others realizing. My daughter’s DS is obvious to others. What is not obvious is all the other things we are dealing with. My girl is such a sweetie and so loving and outgoing and friendly and happy, and that’s what most people see. They don’t witness the meltdowns and the moods. That’s reserved just for me and mine (yay! ha). Today, I share this to help others see what happens behind our doors some days, and so others in a similar situation as we are can perhaps find something to latch onto and know that I get it. I feel ya.

She’s high and she’s low. Most people see this. I love this face. I love her all the time. But all the complexities and challenges can be exhausting.

How my nest is different thanks to DS

nest I read this blog post thanks to a friend sharing it on Facebook, and I had too many ideas to share in a comment, so I’m writing my own post with my takes on the idea. Liane Kupferberg Carter wrote “For Some Moms, the Nest May Never Be Empty.”

I wrote last year that my second daughter, who has Down syndrome, turned 18, and it was a different experience than when my oldest daughter did. She’s now 19, and she completed high school this June. That change and others of this year have been more impactful than her just turning 18. This year, she’s in a new class setting that’s at our local community college, but that’s still run by our county school district, as was her high school class. She is still learning life skills, but the class is working even more toward the students being able to move about in society on their own and work as much in ways they are able to and will enjoy. She carries around a small purse with a little money and her state I.D. card. She got a bus pass and her own library card (which I just hadn’t done with her yet myself). She’s talking more about socializing. Or maybe I’m picking up on it more. With her having “graduated” from high school, having her be able to be “out there” in the world in ways that work for her seems more imminent. I’m thinking more about finding ways for her to get out there and socialize with her peers. I’m thinking about the possibilities of her immediate and slightly more distant future, whereas before I was just putting that on the back burner in my mind, “putting a pin in it,” because there’s just so much else for me to think about RIGHT NOW (I mean, having three kids still at home, plus a “grown” daughter and now a grandson — yay!!! — is just a ton of work anyway. A woman can only do so much).

My husband has kind of set in his head that she will just live with us forever, so we will never be empty-nesters, just as Carter wrote. I’ve always had in my head that she certainly could move out to different kinds of settings that she may enjoy more than just staying with her parents, at least off and on. I still think that. She’s pretty social and capable.

At the same time, my nest continues to feel different. My oldest moved out two years ago when she got married, which really changed the dynamics in our home. We have four daughters, and it’s astounding how the dynamics shifted when just the oldest one moved out. For one, I really mourned when that oldest got married. It took me months to come to grips with it. I missed her so much, and having her be married and “belong” to someone else made it different than just going off to college. For another thing, I just didn’t like the way the remaining three interacted, compared with how it was when my oldest was still at home. They still bicker more than when she was here (as one example), and it’s been 2-plus years.

I’m acutely aware of the differences between me and my friends, especially the ones I follow on social media. They have similar age gaps in their families, at least at the beginning (there’s two years between the first two, but then a four-year gap after I had Marissa — I just wasn’t ready for another infant too soon because she still felt like an infant and toddler for a longer time than the first had — and then a five-year gap between the last two because it took three long years to get our adopted girl), and while I see their oldest out and doing various fun “new-adult” things like my first, then I see their second and third children out doing those things, too, and I feel like my situation has stalled. Sure, it’s comparing, and you know what they say about that, but it’s just always there. I see it. I feel it. I feel “other.”

I still have plenty of parenting time in me: I have a sophomore and a fifth-grader. From experience, I know the remaining time at home is going to fly with my sophomore, who really keeps me hopping. Then she’ll fly on out of the nest on to all kinds of great things. She’s an achiever, like I was. And the 10-year-old, well, 8 years still seems like a long time.

So the nest is still full-ish. But I have enough taste of the birds starting to fly out that I can feel those changes. I can feel the things that aren’t changing. I also worry a bit about things I’m not doing, which certainly isn’t different from any parent, no matter their child’s situation. I have just recently watched one episode of “Born This Way,” which follows some young-adult people with Down syndrome, and it stirred up all kinds of feelings of sadness, guilt, wistfulness, worry, etc. I was happy for the ways those young adults are just being “normal” young people. I felt guilt for not doing more to get my daughter “out there” more like that. In a way, I don’t want to have that to compare my situation to, because it’s almost harder emotionally for me to compare with people who are essentially more in my situation than others I know. It sets a standard I don’t know I can meet. I mean, I’m sure it’s meant in part to give me hope for a good life for my daughter, but my brain doesn’t work that way. I compare negatively.

I certainly know I’m not ready to deal more with my daughter’s dating future (which is probably a whole other post on its own). It’s hard enough to deal with certain simpler issues with her when she acts like an 8-year-old in many respects, let alone the complex world of dating.

I guess that’s where I put a pin in a few items still, work on some that I’d pinned earlier, and know that I can do this, one or two topics and needs at a time. And whether she eventually flies out of the nest permanently or occasionally, we’ll be (mostly) ready for it when we amble up to that bridge that needs crossing.

My favorite books from 2016

Every year I like to do a round-up of the best books of the year. Since I don’t always read freshly published books, this isn’t technically a “best books OF 2016”; it’s a “my favorites that I READ in 2016.” However, that being said, many of them are pretty new. So let’s get started.

I read a lot of fiction and YA and this year it really showed. Only one of my favorite books that I got around to reading was nonfiction. So let’s start with that category, since it’s so small.

Nonfiction

The Gene: An Intimate History, by Siddhartha Mukherjee. The author’s book about cancer a few years back, The Emperor of All Maladies, was excellent, and this book about the history of genetics, the code that informs all life, was just as informative and interesting. It takes readers on the odyssey of piecing together information about the human gene and genome since the early days, ending with the research and work that is happening now, in the decade after the completion of the sequencing of the human genome. The most recent research was news to me, and I found it fascinating and at times alarming. As Mukherjee posits about what we now know, “What will we do with this information?”

Fiction

Britt-Marie Was Here, by Fredrik Backman. An older woman who really, REALLY likes to have everything just so finds out her husband has cheated on her and goes out in search of work. She can only find a temporary position in a tiny town that’s on the verge of essentially closing up shop. She slowly gets pulled into the lives of the people who live there and finds herself truly “getting a life.” The book is gently humorous, tender and at times sad. It’s entertaining and sweet. There are too many wonderful metaphors for me to have kept track of, and I loved each one of them. I ended up taking my time reading the book because my life was busy, but I was able to savor it more that way, which was a bonus. A lovely book.

Every Heart a Doorway, by Seanan McGuire. Children have been known to slip through hidden doorways into other fantastical worlds. And some return to their everyday lives, for various reasons. Some do not long to get back to those worlds; others do. The latter consider those fantastical worlds their true homes and miss them terribly, always looking for that secret door to open again. Of course no one, including their parents, understands or believes their stories. But someone actually does believe their stories — and understands their longing to be “home.” Eleanor West runs a boarding school that caters to these children and teens, that tries to help them figure out how to move forward in a life that may never have them seeing that door again.

I cannot express just how truly unique this book felt. I’ve never read anything like it. The premise is clever but then the feel, the world, the execution of it all… just amazing. I felt transported.

Thrice the Brinded Cat Hath Mew’d, by Alan Bradley. This is the 8th Flavia de Luce mystery novel, and if you haven’t read any of the previous ones, go and start from the beginning. Now. And any year that has a new novel, most likely, it’s going to be on my best-of. These stories are technically murder mysteries but are more about their tween/teen heroine than anything else. She is curious, precocious, a lover of chemistry, an annoyed youngest sister and proud sleuth. This go-round wasn’t the most “mysterious” of all the mysteries; I saw much of it coming from a mile away. But, again, since it’s more about time spent with Flavia and her charms, and chuckling a good deal, that’s almost neither here nor there. I’ll keep reading as long as Alan Bradley keeps writing.

Uprooted, by Naomi Novik. In the valley near the Wood where Agnieszka lives, the Dragon, a powerful wizard who lives in a tower, takes one girl from the villages to serve him, then lets her go, every 10 years. The girls who will be 17 in that year fear the possibility of being chosen, and their families dread it. Agnieszka (and everyone else) is sure her beautiful best friend Kasia will be chosen, so they are all taken aback when at the last moment, Agnieszka is selected instead. She herself is completely unprepared and is devastated when the cool, detached wizard takes her, and then, inexplicably, starts trying to teach her how to do simple spells. It turns out she, as opposed to the other girls, who were just taken to be servants, has potential as a witch, and she and the Dragon must find a way to keep the evil power of the nearby (and encroaching) Wood at bay. The story is complex and rich in detail and atmosphere. It’s essentially a Polish fairy tale set in the 1500s, where magic is real. I was caught up in it but the reading was slow going. I didn’t just breeze through it. But that turned out to be a blessing by the end, which was hugely satisfying and led me to want to just sit quietly within the story and appreciate it for all it contained. Just lovely.

Young adult

Lady Midnight (The Dark Artifices, book 1), by Cassandra Clare. The Shadowhunters, humans with angel blood who fight demons, return in another series by Cassandra Clare. Those who have loved her other series (set in New York and Victorian London) featuring the defenders of humankind (or “mundanes,” as Shadowhunters call humans) will no doubt want to read this new one, set this time in current-day Los Angeles. I did love being back in the Shadowhunter world but I had a few quibbles. One, there wasn’t quite as much humor in this book as there was in City of Bones and other initial entries in the Mortal Instruments series. Two, these are teenagers. They admittedly have a great deal of responsibility, much more than the average human teen. But in these series, and in this new book particularly, they pretty much go about their business without much adult guidance and restraint. That’s kind of a plot point, but it leads to a lot of stuff happening that parents should know about if their teen is reading this new book/series. Not the best of Clare’s work, but I do love the world.

My Lady Jane, by Cynthia Hand, Brodi Ashton and Jodi Meadows. I LOVED, LOVED, LOVED this book. It’s laugh-out-loud funny, romantic and just a rollicking fun time. Plus, it turns a tragic romantic tale from history into a happy ending, that of Lady Jane Grey, the nine-day queen of England, and her husband, Lord Guildford Dudley, who were beheaded after Queen Mary took over as monarch and after the Protestant rebellion of Thomas Wyatt the Younger. What’s not to love?

The Love That Split the World, by Emily Henry. This is one of those rarer books about which I don’t want to share very much. Discovering the story and what’s happening is one of the joys of reading this book. It unspools just a bit at a time, revealing at last the bittersweet and devastating truth. It’s beautiful and heart-rending and just cool in its exploration of the reason behind the strange things the main character is experiencing. The end grabbed me and shook me and left me a bit emotionally exhausted.

The Skylighter (The Keepers’ Chronicles, book 2), by Becky Wallace. This is a sequel to a fine book, and it’s just a duo, rather than a trilogy. There’s a world of magic and royalty and intrigue, with a few dashes of romance. The story follows several threads from various perspectives and pulls them all together at the end. I enjoyed this second as much as the first (The Storyspinner) and am still impressed with the skill of the writer.

These Broken Stars, by Amie Kaufman and Meagan Spooner. An intergalactic war hero and a young heiress controlled closely by her father are stranded together on an alien planet. They hope for rescue, but as time goes on it seems less and less likely. The two have to figure out how to get along and how to work together. How to stay alive. Strange things start happening, particularly to Lilac, and the mystery of why the Icarus crashed becomes compounded by the mysteries of an empty but terraformed planet and strange visions and “whispers.” It’s part romance and part sci-fi mystery. About two-thirds of the way in, the action and mystery ratcheted up and I was compelled to just keep reading because it was so interesting. I really enjoyed the story.

5 ways to make the holidays more meaningful

The holidays can bring such joy — families gather together to share specially prepared meals, exchange gifts, and savor the particular magic that seems to permeate the air. Frosty windowpanes frame displays of trees and candles whose lights dance about merrily. The cold makes noses jauntily pink, and hot cocoa and spiced cider warm everyone back up. The scents of cinnamon and pine waft through the air.

Of course, that’s the ideal, what sparkles in our memories of favorite holidays. It’s also possible, with busy lives and the demands of work, kids’ last days of school before the winter break, and just trying to get ready for the expectations of what the holidays should be — grocery shopping, endless treks to the mall to get the toys and gadgets on the kids’ wish lists, getting lights strung around the house — to lose sight of the true meaning of the holidays.

Here are a few ideas for ways to bring back that wonderful feeling that can be the hallmark of this special time of year.

Get ideas from Grandma.

Ask an older member of your family, such as a grandmother or great-uncle, to share a tradition from his or her childhood and incorporate that this year. Grandma may tell you how when she was little she put her shoes outside the front door to have them filled with goodies from Santa Claus, instead of in a stocking next to the fireplace. This might work particularly well if you don’t have a fireplace and the children worry how Santa can get to their stockings without one!

Shake the family tree.

This free land of ours is a melting pot of many countries with their own unique practices surrounding the holidays. Your family may be a mixture of Russian, British and Norwegian, for example. Look up Christmas traditions that are common in Norway, perhaps, and pick one or two to incorporate this year in your celebrations. Christmas Eve dinner there usually features pork or lamb ribs or even cod, according to visitnorway.com, followed by the opening of gifts waiting under the tree. Get a recipe for Norwegian-style ribs and try that as a main course, and do the same for the traditional cookies — goro, krumkaker or berlinekrans.

Plan to volunteer or give back somehow as a family.

Depending on your family’s size and the ages of your children, it may be easy to find some way to give back to your community in some way or it may be a bit more challenging. Little ones won’t have a long attention span or may not be old enough to help out at homeless shelters or places that provide free meals, for instance. But anyone can find some way to serve others. Donating cans or boxes of nonperishable food items is a simple option; children can help Mom pick out vegetables they like and want to share with others. Take a box or bag full to your local food pantry. A more one-on-one way to brighten someone’s day is to visit a nursing home. Share your talents, such as music, or just sit and visit and ask an older person about his or her life. Ask him or her about long-ago traditions or holiday memories, even.

Re-emphasize your faith.

light Our holidays are based on religious events, after all. Find a way to focus more on “what it really is all about.” Make an advent calendar that takes the whole month of December leading up to Christmas Day to remember miracles Christ performed. I’ve been enjoying the LDS Church’s #lighttheworld initiative this month so far, which gives an idea of something to do service-wise every day of the month leading up to the 25th, based on what Jesus did in his life.

Gift a memory.

It can sometimes be difficult to find just the right gift for a loved one. This year, try “throwing it back” by finding an item that reflects a favorite toy or experience the recipient had as a child. Children of the ‘80s had Atari game systems; try giving him a classic video game set in the form of an app. Maybe your grandma misses the beautiful farmhouse she grew up in; give her a framed photo of it or an ornament that harks back to it. Or try a charm for a bracelet or necklace. Have some fun!

New territory: Having an adult child with Down syndrome

Over 18 years ago, I found out through a blood test and amniocentesis that my second child had Down syndrome. Back then, there wasn’t much in the way of the Web, so I went to the library. I found one book that talked a bit about children with DS and had a few pictures that weren’t really flattering. I didn’t feel I had much to turn to in the way of sweet stories, adorable photos of adorable kids and babies, support systems, etc.

That did start changing when I had her. I found out about Band of Angels, which at the time was creating gorgeous calendars featuring models with DS shot in lovely settings. We were officially entered into “early intervention” programs where we lived and she got help with physical and occupational and speech therapy and so on. I got involved in a local Arc.

But for so long, my daughter was little, a child. She was cute, she was the poster girl for the UCP Center’s yearly fundraising campaign. She was a doll, just lovable and outgoing and friendly.

And it’s kinda funny, because for a while now, there’s been more online awareness of younger children with Down syndrome. There are plenty of groups and cute photos that circle social media. But not a whole lot in the way of adults getting attention. (But now there is the A&E reality show “Born This Way,” that follows young adults with DS living their lives, so that is cool progress.)

In short, it was relatively “easy” to have a child with DS. It wasn’t a whole lot different than raising my other children.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

What started a change was her adolescence. She hit 14 and started puberty. She got a period. She learned about wearing pads (and not to talk about them all the time in public). She became a teenager. The moodiness that’s hard to talk through, as I have done with my other teen girls; the periods; the observations about cute boys or about seeing her sister or friends at school dating or holding hands or kissing … it wasn’t something I was really prepared for. It wasn’t so “cute” a time as when the DS kids are younger and still sporting the adorableness of babies and preschoolers. So there’s not as many pictures, not as many inspirational stories circulating Facebook and the like. For me, my new situation parenting a DS teen was kind of uncharted territory.

And that’s become even more so now that she is 18. She’s legally an adult today. But unlike my older adult daughter, she doesn’t have a driver’s license, can’t help out driving herself and younger sisters around; doesn’t run errands for me; doesn’t babysit. She needs a bit of babysitting/supervision herself still. She’s emotionally and mentally really more like a 7- or 8-year-old in a lot of respects. But she’s bigger and developed and has a menstrual cycle. It’s harder to discipline her. She’s moody and just mumbles loudly or trounces off to her room and slams the door if I try to tell her, gently and kindly, that she should be nicer in how she speaks to her 9-year-old sister, for instance. I can’t really talk her through things.

In short, it’s not so cute anymore. It’s NOT not that different from parenting my other children, like when she was little. Don’t get me wrong: she is bright in many ways and really helpful and can be incredibly sweet. She’s pretty great. But it’s now really evident that she’s different. She has Down syndrome, and it’s obvious.

We’re getting her a state official I.D., not a driver’s license. We’re talking about some programs that she can do post-high school, next year. We’re starting to think more about what kinds of things she may be good at, what she will enjoy, for work-type opportunities, for socializing, for living arrangements. This is a whole new ballgame.

That story a parent wrote a few decades ago about embracing a new reality called “Welcome to Holland” seems to be hitting me now. The writer compared having a child with a disability as planning (during a pregnancy) on going on a “fabulous trip to Italy.” But then the new reality hits, and you’re going to Holland instead. In the past 18 years, especially, I’d say, the first 12 or 14, I was kind of going to Holland with Marissa, but I still had plenty of experience in Italy, with my other three children, for sure. And then with Marissa, I was kind of in Little Italy in Holland. Now, though, that feeling of visiting Italy at least through restaurants or guidebooks or seeing pictures on the Internet has dropped away. It’s hit me that I’m really in Holland.

It’s OK, just as the story goes. But I didn’t see it coming. Or I kind of did but now it’s hitting me. And I’m going through another adjustment period. And there’s not a lot in the way of cool or cutesy memes or stories or photos going around online — but, like I said, there is “Born This Way,” so that’s a good step in the right direction. Maybe I’ll start seeing more of that. And my sharing my experiences will prompt others to share. Or I’ll just start finding others’ stories more, seeing them amongst all the other stuff that’s online.

So here I am, my cruise ship permanently docked in Holland, at least with one of my children. I’ve got ships in Italy with the other three. It can be jarring a lot of the time to switch between the two countries. But I’ll make it work, and it’s a new adventure.

Treatment for mental health is hard because diagnosis is even harder

Part of the reason I write this blog is to document my particular struggles with mental health. Having to deal with some kind of challenge that’s within the range of mental health is just as common as dealing with some kind of difficulty with any kind of physical health. In other words, either category is EXTREMELY broad. Physical challenges can range from diabetes or thyroid issues to cancer or gallstones. Any disruption in mental health can lie anywhere in a big range, too. Physical illnesses can sometimes prove tough to pin down, but it seems figuring out a diagnosis of a mental illness can prove consistently more difficult. Even if a diagnosis seems mostly straightforward, finding a treatment that will help the person going through it to get to a fairly “normal” state is far more difficult.

I’m in my mid-40s, and I’ve been diagnosed with depression, bipolar, or atypical bipolar disorder variously over the past 25 years or so. I’ve gone through a number of antidepressants and some medicines that are usually prescribed to treat bipolar disorder. Some have helped for a short time, some haven’t helped at all, some have made me feel worse. Some have helped enough for me to live my life pretty normally. I’ve been seeing a very capable nurse practitioner for the past five or six years, I think, and I’ve been on an antidepressant that’s pretty much kept me mostly in “normal” mode. But I’ve still had bouts (or very, very long, standard stretches) of what I’d just call irritability. And I know that just isn’t ME. I’ve known instinctively that it’s more a quirk in my brain chemistry or something, rather than a defining characteristic of who I am. And my extremely busy life managing a household, taking care of four daughters (now one of whom is married and out of the house, so the dynamics and responsibilities have somewhat changed, but not at all taken her “off the register,” so to say), working from home part-time and volunteering and managing fairly big church responsibilities, just for a short summation, keeps me running at a high level. It’s easy to say it’s “understandable” I’m irritable. But recently I thought it was time to check in with my practitioner and address the irritability again. I’m exhausted from “managing” it. Surely there’s something out there to help me with my underlying mental health so I’m not working so hard to manage and can just live, expending a bit less energy on coping?

So we visited a few weeks ago, and talked for a while. She is fantastic because she’s very thoughtful and discusses the issues with me, asks probing questions, revisits assumptions, etc. We’re partners in my care, and I really feel she’s very knowledgeable, and she’s sensitive as well. That’s a biggie. She said to me that perhaps I’m not really on the bipolar spectrum at all. All she could say was that I’m just my own thing. So there might not be either a diagnosis for whatever I present as yet, or because mental health really is so varied and unique to each of us, maybe there isn’t or won’t be, if that makes sense. All we know is there have to be some kinds of ways to help me with some kind of existing medication so I can function better. So she said she’d try something, a medication that psychiatrists sometimes use to help with that part of mood. It’s a seizure medication used off-label in this way. She tried me on a very small dose, and I actually do feel it’s helping. My life is still CRAZY BUSY!, but I feel a little less like I have to work hard to manage my mood even while I’m managing my life. So I’m feeling hopeful and a little happier, just to have an extra tool in my arsenal, and to know that my practitioner is really awesome at her job.

This just leads me to a few conclusions yet again: we still don’t know a lot about mental health and illness. We’re doing better than 30, 50, 70 years ago, but we have far to go. And we need far, far more practitioners who have the training, experience and skills to deal with this complex issue. So many people are suffering and there simply aren’t enough practitioners around to help them. I’m blessed to have found someone who can do what she does. Even that’s not perfect, but it’s really about the best I think there is. Meanwhile, I just wish, wish, wish we had more incentives for people to go into the profession and stay there, that the specialists were available in every small and underserved area.

I write this because I just want to put my voice out there. I’m mostly a “success story,” and that’s just because I’m not crippled by my lapses in mental health, and pretty well functioning, and I’m a very resilient, determined personality. I have at least enough income and resources that I have been able to find someone to really help, but that’s still taken a great deal of time and work on my part. It’s been a long and tough journey. It shouldn’t be this hard.

As we work to try to improve outreach, availability and quality of care, and genuine help for those of us with mental health challenges (again, not at all just a small portion of our population), let’s continue to just be kind, patient and understanding to those around us who struggle and need our help. It still does mean the world.