Category Archives: mothering

yes: the hymn of a special needs family

Posted on by July 25, 2022

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.

wholeness matters: how the Church shows the world what it’s made of

Posted on by July 15, 2024

Sips of water. Piles of tissues. No energy to move. Fever, accompanied by chills, aches, and sniffles.

I retreated (slowly) back to bed with a couple of books. The bummer about being sick and spending all day in bed with books is that usually you’re not coherent enough to pay attention or understand what you are reading in the books. So after finishing a chapter for our Gaining Ground group – which is not a hard read to start with – I grabbed a book of fluffy fiction off the shelf that had been recommended by someone online.

wholeness matters: how the Church shows the world what it's made of

It looked interesting: Apocalyptic drama from an unabashedly conservative perspective. Curious. Okay, let’s see what you got.

Now, I know going into these things that this is not a Christian book, so I am not expecting Christian content. But I do expect decent writing, plus a good story that neither insults my intelligence nor demands too much of it when most of my caloric intake for 24 hours has come from vitamin C and ibuprofen.

And for the first, oh, fifty pages or so, it was fine. I couldn’t tell you for sure though, because the book is in the trash over there and it’s not worth getting up to tell you specifically where my level of disgust caused me to throw it in that direction.

I’m not sorry, either. Books are generally sacred in this house, but not that kind. Not the kind that parade as promoting conservative values while the reluctant hero uses women like toilet paper in a pathetic display of a dirty old man’s royalty-driven fantasy.

Here’s the thing: What good is it to promote “conservative values” if they are so riddled with contradictions that you have to put the phrase in quotation marks when referring to them?

What good does it do to push any of those values if the other stuff you’re promoting rips the rug right out from under that foundation?

What good does it do to promote, say, the second amendment, if you are simultaneously muddying the waters by promoting a culture that leads to rampant abortion, pornography, infidelity, and other abuses toward women and the institution of family?

Pardon me while I climb a little higher on my soapbox – I am, you know, fairly petite, and also increasingly unfiltered from all the sinus pressure – and mention just a couple of recent incidents that illustrate this compromise.

The first was a few weeks ago when, in a private group chat, a proclaimed Christian social media influencer started berating and insulting someone else in the chat, and when I
came to her defense, he immediately told me to “F— off.”

This guy is actually doing a great work for the conservative cause in a certain area, yet he completely destroyed his reputation and witness among those of us who saw his true colors. He chose excuses over apology that day, and continues to post prayers every Sunday for his 40,000 followers. (I assume his wife, children, employees, and mental state all need serious prayer, too.)

Then last week, an ignorant man trolled my devotional video and left a long stream of abusive comments and accusations because I am (gasp) a woman who has a platform about Christian living. Don’t you know that women aren’t supposed to talk about Jesus? Don’t you know that if they do publicly say anything about Jesus, it’s considered teaching and you should immediately 1 Timothy 2:12 them outta the Kingdom?

I didn’t. I have, however, actually studied the Bible for over twenty years, and know that a couple verses taken out of context without cultural application do not a mandate make. Especially when multiple passages in context show otherwise.

These men who profess a passionate desire for truth but only display it in fragments are as ineffective as a kid charging onto the battlefield with a BB gun, shooting at those who are doing the real fighting on their behalf. My guess is these guys have related issues (with women and otherwise) under the surface that are also compromising their witness.

It’s important to note that misogynistic drivel like this has played a huge part in driving the overcorrections of radical feminism and loss of gender roles. Dishonor of women from insecure, lecherous men is met with a backlash of dishonor from insecure, grasping women, with children taking the bulk of the crossfire – and misogyny ends up feeding the root of the abortion movement. Fragmented people find themselves culpable for the some of the very acts they condemn and claim to fight against. Stick that in your pipe and smoke it.

Bullies, oppressors and all men who do
violence to the rights of others are guilty not only of their own
crimes, but also of the corruption they bring into the hearts of
their victims.

– Alessandro Manzoni, The Betrothed

Wholeness matters, and if we are walking wounded and broken, our testimony and legacy will be wounded and broken as well.

Last week our pastor said, “The Lord moves in a unified church. The world is questioning who we are, and what the Church is. What are we showing them?”

The Church is obviously not the same thing as the conservative movement, though there is clear overlap. But if those who claim to be part of the Church can get their collective act together where wholeness is concerned, we’ll see a lot more movement in those conservative values we claim to care so much about.

Wholeness runs deep and wide, and not one of us is the same as anyone else — some of us are deeper in some aspects but just barely getting our toes wet (or still standing on the shoreline) in others. Our depths are in different areas, and we stretch wide and shallow in different areas, too.

Some of us are great at forgiveness or purity, and others are deep into kindness, mercy, or truth. Some of us regularly practice watching our words or taking the log out of our own eyes. Some of us are growing in repentance, and pushing hard to go deep in self control.

We’re meant to grow in all directions, of course — it’s called wholeness, not partness. Not one of us is off the hook in any area.

God is constantly leading each of us deeper and wider in different areas because He knows the waters we’re afraid of and avoiding, and He wants our character to represent Him in fullness.

We avoid certain areas, though. We think there are sharks in those places and we have too many good excuses for not going there. The battle is too hard. The Greek is too unfamiliar. The sins are too comfortable. Egos are too fragile.

But God is calling us to claim that territory, because the more wholeness we walk in, the less territory the sharks have to move in.

The church leads the culture, not the other way around. So, how are we leading? Where are we following or imitating, instead of igniting and inspiring?

The more kindness we show, the less need for forgiveness there is.

The more self control we use, the less regret we have later.

The more Greek we learn, the less stupid we sound when trumpeting out of context verses we haven’t actually studied.

The more purity we display, the more protected our marriages are.

The more protected our marriages are, the more protected our children are.

The more humble we are, the less we will fall.

So we press into those dark areas with intention to conquer. Because we were once sharks, too.

We can’t expect to win battles when we spend so much time alternating between committing friendly fire and shooting ourselves in the foot. With those kinds of leaders we are worse off than before: One or two pet causes upheld, while the foundations of society that those causes claim to benefit lie in ruins.

Some of the sharks really are well meaning, though. They truly think that they are doing Kingdom work in their bloodletting.

“Beware of false prophets, who come to
you in sheep’s clothing but inwardly are ravenous wolves. You will
recognize them by their fruits. Are grapes gathered from thornbushes,
or figs from thistles? So, every healthy tree bears good fruit, but
the diseased tree bears bad fruit. A healthy tree cannot bear bad
fruit, nor can a diseased tree bear good fruit. Every tree that does
not bear good fruit is cut down and thrown into the fire. Thus you
will recognize them by their fruits.

“Not everyone who says to me, ‘Lord,
Lord,’ will enter the kingdom of heaven, but the one who does the
will of my Father who is in heaven. On that day many will say to me,
‘Lord, Lord, did we not prophesy in your name, and cast out demons
in your name, and do many mighty works in your name?’ And then will
I declare to them, ‘I never knew you; depart from me, you workers
of lawlessness.’

– Matthew 7:15-23

Jesus knows how to sort us out. He knows when things are not as they seem. He knows who is fake and who is real.

And He knew what it would take to bring redemption and wholeness. He decided we were worth it.

Won’t it be amazing when those who are true are revealed to each other? When the men who put women down for daring to speak will understand for the first time how their misguided efforts actually diminished the very thing they claimed to be fighting for? We will meet each other unhindered by pride, unshackled from insecurity, eyes fully open. In wholeness.

We will be repentant without shame, forgiving and forgiven.

The waters will be clear, shark-less, farther than our eyes can see.

just getting started: the overwhelm that equips us

Posted on by May 26, 2022

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.