yes: the hymn of a special needs family

The day we met Reagan is the day we made the decision. We’d read all the translated paperwork and what little history there was to give us. We understood about delays, physical, emotional, and cognitive. We knew there would be years of catching up to do.

And then she walked into the room, and all that changed. No eye contact, a little overly compliant in some ways, and constant stimming movements that indicated institutional autism. Still, at almost seven, a toddler.

yes: the hymn of a special needs family

In retrospect, the paperwork we’d received was a positive spin on things, leaving out crucial information that we filled in later as best we could. And I guess I followed its lead, because during that first week of getting to know Reagan, I blogged only a few times and put the same kind of spin in those posts. There was too much to think about and process. And I don’t remember when Fetal Alcohol Syndrome came into our daily vocabulary, but we knew that first day that her needs were not what we thought we had signed up for.

That first day, meeting her in her orphanage, we realized we needed to make a different kind of decision.

Will you still say yes? the Lord asked us. And we did. We have said yes every day for the last ten years. It has been imperfect, victorious, clumsy, gritty, and stubborn, but it has always been yes.

So I guess I don’t like it when professionals who are new to our family decide to lecture me on things I have lived with all these years while they have sat comfortably behind a desk.

FAS can be very…ahh…” The doctor hesitated, apparently looking for the right words. “Difficult…to live with. And…long-term…there are many issues that need to be considered –”

“We adopted Reagan ten years ago, and it was a two year process. We’ve had twelve years of considering. We know what we signed up for, and it wasn’t to foist her off onto some government program as we get older.”

“Ohhh, well, good. Yes, I completely respect that.”

But then she hesitated again. I was pretty sure I knew where she was trying to go, and she confirmed it with her next sentence.

“The, um, challenges involved with Fetal Alcohol damage are lifelong, and I don’t know how old you are…”

Why is it that professionals with letters after their name and only two sentences of information about our kid feel it their duty to tell a parent the obvious? Which one of us has spent years caring for the child, twenty-four seven?

Frustrated with the beating around the bush, I brought out the chainsaw to help her out.

“We already know we will never be empty nesters.” No cure, irreversible damage, yes, we get it.

“Ohhh, okay,” she said, obviously relieved.

But I wasn’t done. I’m not sure what kind of idiot parents she usually deals with, or if she’s just another professional without personal experience who assumes parents need the expertise of someone who has spent more time studying special needs than actually living with them. But ignorant condescension fries me.

“We’re not contacting you because we’re new at this,” I said. “We’ve been her parents for a long time. We’re not suddenly at a loss for what to do with her.”

“Oh!” she said, surprised. “Why are you contacting me?”

“Because apparently Reagan needs to have this testing done in order to stay in her current school program.” It’s a hoop we have to jump through, nothing else.

“Oh!” she said again, and once on level ground, we finally got into the details of the assessment.

But really, this assessment is more than a hoop. It will be an IQ test and several other “instruments” (alas, not the musical kind) that test Reagan’s cognitive functioning and achievement. It will be results, and labels, and numbers. It will be many things I don’t really want to know, and many other things that we already know that will suddenly, miraculously, become official because an expert who will spend less than an hour in Reagan’s presence will finally verify them.

Yippee. Pardon me if I don’t applaud.

I am completely torn about it. We adopted her to keep her from being a cog in a wheel she would not have survived. We homeschool to keep our kids from being plugged into systems that strip nearly all individuality and innovation. But Reagan is now officially in high school, and to keep her current homeschool program that she enjoys and is gaining small measures of victory in, she must be slapped with codes and spectrums and assessments to validate her presence there.

“It’s just a number,” the doctor hastened to reassure me. Yes, I agree…but it’s so much more than a number, too. It is like the brain scan conundrum – for years we toyed with the idea of having one done, curious about the amount of damage Reagan is actually living with. But if we saw it, would it matter? Would it be a relief? Or would it leave more questions than answers?

Here’s the real question: Would it remove our faith for a miracle? That’s the one that causes bile to rise and my eyes to water. Sometimes we know too much, and it gets in the way of what God wants to do.

I had a dream once, years ago, that Reagan could speak clearly, perfectly, just like you and me. Long, clear sentences, enunciated words. In the dream she was an adult, a beautiful woman.

She’s getting there physically, at least. Sixteen and beautiful, but not an adult. Without divine healing, she will never be an adult.

Behold, the Lord God comes with might,

and his arm rules for him;

behold, his reward is with him,

and his recompense before him.

He will tend his flock like a shepherd;

he will gather the lambs in his arms;

he will carry them in his bosom,

and gently lead those that are with young.

– Isaiah 40:10-11

Every year on her birthday I am astounded by her new age, but I think we’ve finally hit the point where it no longer surprises us and that grieves me, too, because it feels like jadedness. In a few years it’ll be, “Oh, Reagan’s twenty.” Later, it’ll be “Reagan just turned 27.” And people will continue to drop their jaws in polite disbelief, not understanding or having any frame of reference for her abilities, or lack of them, or for how far she’s come, or what she went through to make it all so difficult in the first place.

In typing that, I pull my hands away from the keyboard, and cover my face with them, and weep. It is the hymn of a special needs mom.

I do not know if she will change. I do not know if we did enough, or are doing enough. I know what I would tell a friend in the same place, of course, and what you would probably tell me, but I also know there are so many things I could and can be doing differently.

But like most special needs moms, I am tired. Exhausted. Overwhelmed. I feel lazy if I take a break, but I need breaks, so I take them, and then I accuse myself of laziness. I waver between radical hope and weary cynicism, and the whiplash between the two makes me dizzy and confused. The future is coming fast and I can’t control it. She will always need help, and we may not always be here to give it to her.

For crying out loud, I know.

I know that when we signed up for this, we signed our biological kids up, too, and I also know that wasn’t fair for anyone. But what Reagan was born with and went through and lives with isn’t fair, either. For her to live at all required a family to step up for her, and God called us to be that family.

So there is no fairness; there is only goodness and endurance and love.

There is the sacrifice of praise.

There is the Word, and His promises in it that never fail and are always fulfilling. As long as she is young, He will lead me gently.

There is the Yes of Surrender that makes room for the miracle, and sometimes the first miracle is what happens in us as we give it.

just getting started: the overwhelm that equips us

The first few weeks were fine: Cute little birds in their cute little boxes in our slightly overcrowded bathroom. Little peeping noises from the chicks, beautiful cooing noises from the quail. We could watch them for hours.

just getting started: the overwhelm that equips us

But then the chick dust started.

And, oh my friends, do you know what chick dust is? It’s a combination of things, but mostly it’s dander from the feathers that are growing in from about two to six weeks of age. If you have a history of asthma, pneumonia, bronchitis, or other respiratory issues, it’s no bueno to be around.

The feathers are important, of course. They’re what help them endure the elements, and they’re what make them beautiful. But the dirty, ugly-cute season has to be endured in the process of growing them.

I started to notice the burning in my throat and chest, reminiscent of pneumonia. It felt like I was suffocating. So I started taking supplements for lung support and we cleaned the brooder multiple times a day.

But the dust took its toll. So I was banned from the bathroom, and as soon as it was warm enough outside, the chicks were banned from the house.

(No, it has nothing to do with bird flu. If you believe what the news is telling you about bird flu, I have some oceanfront property in northern Wasilla I’d love to sell you.)

Now the birds are seven and eight weeks old: Their feathers are in, the dust has settled, and they’ve upgraded to the coop and the yard, all beautifully fluffy as they peck at dandelions and bugs. The quail have even been laying eggs for almost two weeks now, and it feels like we made it.

It was a long, crazy month, though. Learning how to care for birds while having several other irons in the fire was a level of overwhelm I haven’t felt since…well, maybe since having a newborn. In this case, we had 38 chickie newborns, a kid graduating, several work and writing projects, grades and progress reports to turn in for six kids, garden seedlings everywhere, and the normal societal unrest that has become so common in the last few years that it’s stopped surprising us.

It’s not special; you have all your own stuff you’re dealing with, too. We’re all just living normal life, but doing it in an era that is kicking up dust everywhere.

He came to Simon Peter, who said to him, “Lord, do you wash my feet?” Jesus answered him, “What I am doing you do not understand now, but afterward you will understand.” Peter said to him, “You shall never wash my feet.” Jesus answered him, “If I do not wash you, you have no share with me.” 

– John 13: 6-8

We don’t understand why all these things are going on around us, but Jesus is getting our feet wet.

I can’t tell you how many times I’ve had conversations with friends in recent weeks about how the events of the past few years have taken their toll, and we are feeling the effects of it. We are overwhelmed. Feeling scattered. Fighting burnout. Wrestling anxiety again that we conquered years ago. Dealing with a few health issues from all the stress.

Simon Peter said to him, “Lord, not my feet only but also my hands and my head!”Jesus said to him, “The one who has bathed does not need to wash, except for his feet, but is completely clean. 

– John 13:9-10

Don’t make it weird, Peter. I’m not drowning you, I’m equipping you.

One friend mentioned how prayer feels like more of a struggle lately. The words don’t come as easily, and since they don’t, she has to force words, which feels less genuine. But she’s learning the discipline of mature, fighting prayer. The truth is, my friend is doing great with her prayer life. She’s growing and persisting in it in new ways.

If you feel like you’re not doing well in your prayer life because it’s not as easy as it was, you’ve probably actually moved to the next level and are feeling the stretching of growth.

Our success can’t be gauged by how comfortable we are with something; usually our success is indicated by our willingness to continue doing the right thing even when it’s hard and uncomfortable.

We’re not going under; we’re graduating. We feel the dust burning in our lungs because it’s time for an upgrade, and we need to take new territory.

We watched the fruition of it this week when our daughter graduated. She’s our second grad but the first to walk, the one who was born after a horrible miscarriage and brought redemption even before she breathed outside the womb. She’s beautiful and gifted and brilliant, and just so you know, she’s getting a shotgun as soon as she turns eighteen. (If you believe what the news is telling you about gun violence, I also have some lakefront property in our chicken coop you really ought to see.)

The grades are in, the paperwork is done. But she isn’t finished; she’s just equipped for the next level.

And I have been feeling this upgrade, too. Last week when I was at the desk, trying to settle into a few hours of work, I felt like a deer in the headlights, unable to figure out what to tackle first. I was stunned by the amount of needs and directions I had to go in.

It was too much; I turned the page and started making a list of irons in the fire, and got almost halfway down the page before I stopped and put the pencil down.

Lord, what do I do with all this? I asked. Where do I start?

The Holy Spirit started asking questions back:

Are any of these temporary?

Yes. There’s a temporary partnership, a smallish project to finish, a bigger task to be done, and Iree’s graduation. Those won’t be on the list forever.

Are any of these negotiable, or not necessary?

Um…no, not really.

Are they all bringing life and bearing fruit, even if you can’t see the fruit yet?

I think so. There’s one I might be able to eliminate but it’s too soon to tell.

Start at the top. Do the thing closest to you and work your way down.

So I made the phone calls, returned the texts, wrote the articles. Filled out the paperwork. Graduated the girl.

The list has started to shrink; it doesn’t quite hit the middle of the page anymore. And I know it will always flux and change – things will be added to it as others are crossed off.

But you and I, we are growing, and upgrading, and effectively engaging a culture that is reaping the consequences of simply going with the flow, refusing to do the hard but necessary things. We’re persisting in doing the right thing even when it’s not comfortable.

We’re not finished; we’re just getting ready for the next level.

I’m not suffocating you, Love, He tells us. I’m equipping you. No feathers, no flight.

best books of 2021

We’ve had several windstorms already this winter but lucked out during the last one, when most of the Valley lost power. We, of course, had our own drama at that time so it was a huge blessing we didn’t also have to deal with no heat, hot water, or electricity. But we lost power earlier in the year enough times to decide that a woodstove was a necessity sooner rather than later.

best books of 2021

When the power went out during the first windstorm last fall, it was late afternoon and we were quickly losing daylight. I was reading, moving closer and closer to the window so the light would hit the page at the best angle.

This was before the first real snowfall, so the ground didn’t reflect any light. Outside, an old leaf flew up and caught on the branch of a tree, adopted temporarily before letting go and flitting like a bird to another tree where it held again for a minute before a gust blew it away.

Inside, the light kept fading, and even though I was trying to read Hannah Fowler fast enough to finish the chapter before darkness made it impossible, it was a losing battle. It was just like when you stay up too late, trying to finish a chapter before exhaustion hits. But there wasn’t enough light, so I gave up and lit candles and started putting together a cold dinner.

My goal was to read 52 books last year. I read 54. It’s my record; the only other time I came that close was 21 years ago which was the first year I was a mother, when I was nursing a baby with reflux 32 hours a day. This year my goal is higher but so far it’s off to a slower start – I’ve only marked off one book so far – though I read several at a time and could feasibly knock out six before February. We’ll see.

Here are my favorites from last year: The ones I loved, the ones I’ll read again, and the ones that I think could change the world if more people read them. Not every book fits in all those categories (though the ones by C.S. Lewis do, of course). And in full disclosure, the first two books on this list are ones I’m still reading. But I love them so much that you get them on this list now so you can grab them sooner rather than later if you want to.

The Vision of the Anointed by Thomas Sowell:

I quoted this one twice in my last post with this warning: “Thomas Sowell is crazy smart, and I admit it helps to have a drink handy while reading him (I mean coffee, not wine, or don’t bother).” So you’ve been warned. But this is one that I think could change the world if more people read it. He wrote it about 20 years ago, but you’d never know that if the copyright page didn’t tell you; it seems like he’s writing about the days we’re living through now. Here:

Human beings have been making mistakes and committing sins as long as there have been human beings. The great catastrophes of history have usually involved much more than that. Typically, there has been an additional and crucial ingredient — some method by which feedback from reality has been prevented, so that a dangerous course of action could be blindly continued to a fatal conclusion.

— Thomas Sowell, The Vision of the Anointed

An Everlasting Meal by Tamar Adler:

I’ve read a lot of cooking and foodie books over the last few years and this is my new favorite. I will come back to it again and again (and I already do, as I’m cooking) – she is not only a beautiful, gifted writer, but she cooks the way I do (except she’s a chef, so, you know, tiny difference) and reading this book validates my quirks in the kitchen. I want to cook every time I read it. So if you don’t like to cook, give it to your spouse and see if it does the same thing. You’re welcome.

Howards End by E.M. Forster:

I don’t know if I loved this book because I loved the new movie version first or if I would’ve loved the book more (or less) had I read it first before watching it. It’s one of those that has major lessons in it about human nature for those who read slowly enough to learn them. But if you’re not sure about reading it, try the most recent version of the movie because it is also wonderful, and see if that convinces you. Because, forget Howards End, I want to live in the Schlegel’s London flat full of stuffed, turquoise bookshelves.

Pity, if one may generalize, is at the bottom of woman. When men like us, it is for our better qualities, and however tender their liking, we dare not be unworthy of it, or they will quietly let us go. But unworthiness stimulates woman. It brings out her deeper nature, for good or evil.

– E. M. Forster, Howards End

Nicholas Nickleby by Charles Dickens

This was my second go-round with Nicholas Nickleby and I forced my family to come with me. Most of them Some of them liked it. To be fair, it took us over two years to get through the whole thing because it’s over 800 pages and we would read aloud only a few times a month over the squalls of a baby who became a toddler while we went through it. Using Librivox during long drives to Palmer helped, and if you like audio, there’s a terrific version here.

Here’s why I love Nicholas Nickleby, and it’s not just because it’s by Dickens (though he’s my favorite and that’s a pretty good reason): I love Nicholas because he does what you want him to. He stands up for his sister, he confronts cruelty, he is patient and tender with the broken, and best of all, when someone needs horsewhipped, he’s not afraid to do it. *glares disgustedly at David Copperfield*

The Awakening of Miss Prim by Natalia Sanmartin Fenollera

I do not like modern fiction, almost ever, and this was an exception. It is a cozy, contemplative, bookish story that makes you want to move to the town it takes place in. But let me do you a favor and tell you right now that the Man in the Wingchair never gets a real name, which surprised and annoyed me – I had been waiting to discover his name for the entire book. So I’m telling you now to prevent you from expecting it and being disappointed, thereby freeing you to love this otherwise delightful, beautiful, slightly nerdy book.

Hannah Fowler by Janice Holt Giles

This was an ugly old hardcover sitting on my shelf that I must’ve picked up at a thrift store years ago. I happened to pull it off the shelf one day and out of curiosity read the first sentence, and then the next, and then the next…and this is a good way to find the next book you want to read. If you’re not bored in those first sentences, it’s worth a go.

I learned something new in every chapter about pioneering life, living outdoors, and homesteading. Hannah is a strong, thoughtful character, and as I read I wondered if she was strong or gutsy enough to do the things I was hoping she would…and she did.

Wind in the Willows by Kenneth Grahame

I have said so much about Wind in the Willows here already. It’s in this post, and this post, and this book, and all I have left to tell you is that it gets better and better the more times you read it, so please get going on it and you won’t be sorry. This was probably my fourth or fifth time through. If you can read it out loud to your kids and give Toad a ridiculous voice, all the better.

A Brutal Justice by Jess Corban

Quick backstory: I found this book through an online readers group when someone mentioned a hate-fest of people leaving 1-star reviews for its Christian author because one reviewer said her books were full of  homophobic content. So I bought the books (it’s a series of two) to see for myself, and lo and behold…the haters were wrong, as they often are. Here’s my review of the first one, which will also tell you a little about the second one:

This book both was and wasn’t what I expected, but it was nothing like what all the angry, misinformed 1-star reviews tout it as (most of whom admit they never even read the book, which is obvious to those of us who have…and ironically meshes well with the point of the story).

That point of the story is that women, acting in fear and anger and hatred, can be overbearing and cruel. Attempting to fix one huge problem by going in the extreme opposite direction is foolish and leads to serious consequences. Those consequences need to be faced and acknowledged, not ignored out of fear, insecurity, or narcissism.

I don’t usually like young adult books or dystopian novels, and the writing in this book is definitely not my style. (The writing in the second book improves by several notches, in my opinion.) But the storyline is fascinating, and the way both men and women are honored for their distinctness is something that I’ve thought about for days, and will continue to do so.

So, back to my review of the second book in the series, which is the one I loved: Remember what I said about not liking modern fiction? This was another exception that has me rethinking my prejudice. The concepts, characters, and setting were fascinating, and the turns of the story were super satisfying. The first book sets the stage for the story, but this is the one that I didn’t want to end.

Mere Christianity by C.S. Lewis

C.S. Lewis gets a lot of credit for Oh My Soul because this book shaped much of it (or, it shaped much of me as I was writing it) and I come back to Mere Christianity every five years or so because it is so rich, I want the truths to sink into me and stay there. My high schoolers (three so far) each read it twice during school – once as freshmen or sophomores, and again as seniors.

“A silly idea is current that good people do not know what temptation means. This is an obvious lie. Only those who try to resist temptation know how strong it is… A man who gives in to temptation after five minutes simply does not know what it would have been like an hour later. That is why bad people, in one sense, know very little about badness. They have lived a sheltered life by always giving in.”

– C.S. Lewis, Mere Christianity

The Whole-Brain Child by Daniel Siegel and Tina Payne Bryson

I don’t read many parenting books anymore. It’s definitely not because I feel like I have this parenting gig nailed already (I am still trying to remember to get my little kids in the bath at least twice a week) but because parenting books can be so discouraging. Overwhelming. Condescending and condemning, in a nicey, psychobabble-laced-with-Christianese kind of way. And I’m good enough at fighting all those feelings without paying $17.95 and reading 220 pages to pound it in, thankyouverymuch.

This book was not like that, though. This book was empowering and encouraging and equipping, and so full of ideas and information that it is worth keeping on a low shelf where you can reach it often and refer back to. It also has a terrific section in each chapter that you can read with your kid to empower, encourage, and equip them as they learn to understand how their brain works, too.

The Enchanted April by Elizabeth von Arnim

Another book that you might know better by the movie. I watched the movie years ago and forgot about it, which was a blessing as I read the book because I didn’t remember any discrepancies that irritated me. Iree read the book shortly after I did and then we rewatched the movie and noticed a few. They were, overall, forgivable, and the movie still stands as a good one. But read the book first. It is cozy and quirky in some of the same ways as The Awakening of Miss Prim, but less bookish, more of a study in human nature, and guaranteed to make you laugh out loud at least a few times.

Bandersnatch by Diana Pavlac Glyer

This book delves into the friendships, collaborations, and works of C.S. Lewis, J.R.R. Tolkien, and the rest of the Inklings – how they inspired, encouraged, criticized, supported, and argued with each other, and became more of who we know them to be because of how they lived out the concept of “iron sharpening iron” in a particularly literary way. Vin, Iree, and I all read this last year and each of us loved it.

As we have seen, the Inklings provided inspiration to start new projects; offered support in times of confusion; shaped the direction of one another’s stories; criticized drafts so severely that books were abandoned; changed what they wrote in anticipation of the groups response; initiated competition that spurred their productivity; edited ragged rough drafts and polished fine ones; worked together to produce joint projects; created fictionalized characters based upon one another….And their experiences point to a much larger truth: creativity thrives in community.

– Diana Pavlac Glyer, Bandersnatch

The Screwtape Letters by C.S. Lewis

I read this one last year with a group of friends, and I think I can speak for all of us when I say…it sorta kicked our butts. It wasn’t what I expected, which is ironic because this was my second time reading it. The first time was years (yeeeeears) ago, and I remember it being funny, clever, intriguing, and insightful. And this time it was all that, but deeper, more intense, and way more challenging. Maybe it’s the times we’re living in that brought up a lot more than I noticed the first time I read it. It is a study on human nature, and it is your nature that you’ll examine as you read it. But done right, it leads to more wholeness, and that’s where we want to go.

 “When He [God] talks of their losing their selves, He means only abandoning the clamour of self-will; once they have done that, He really gives them back all their personality, and boasts (I am afraid, sincerely) that when they are wholly His they will be more themselves than ever.”

― C.S. Lewis, The Screwtape Letters

Money For Nothing by P.G. Wodehouse

This is a brief honorable mention which gets credit for making me laugh so hard that I made ridiculous little desperate, gasping noises because it was 1 am and I was scared of waking up the kids. The argument with the Emily the dog…Hugo catching the burglar while reciting lines from Julius Caesar…Mr. Carmody among the birds…this one’s worth trying. Just don’t blame me if you stay up too late reading and wake up your kids by laughing out loud. I already warned you.

So there you go. We’re ready for a big power outage now; we rearranged our bookshelves and dedicated my favorite little corner to our new woodstove. But if you need more book recommendations, all of our books are here. :)

P.S. Want more books, for all ages? Here’s our list.