Category Archives: miracles

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.

not dead, just sleeping: when you need a resurrection

Posted on by April 21, 2022

In the last few weeks of brooding almost 40 birds in our bathroom, I’ve learned a few things about chicks and quail:

They will poop on new bedding before you even finish laying it down.

They will poop in their new dish of food before you leave the room.

They will poop in their water before you turn your back.

Aaaaand quail look dead when they’re sleeping.

not dead, just sleeping: when you need a resurrection

That last point, at least, I knew ahead of time, and it’s a good thing I did. During the first week there was often a moment of panic as we looked in the brooder to see them passed out, collapsed on their sides, legs out. But that’s just how they sleep.

They’re great, though: snuggly, nosy, clumsy, and messy. The water dish was their favorite hangout when they were small enough to walk in it – sometimes for drinking, but mostly for wading and splashing, and then tracking little wet toe prints everywhere. They thought they were ducks, though I told them otherwise.

We lost one within hours of bringing them home (truly dead quail differ from sleeping quail in that they’re cold, stiff, and not breathing) but the other 19 are happy and healthy in spite of our complete lack of experience. A week after we got the quail, our chicks arrived, and even the sick one we thought we’d lose managed to pull through. We call her Toughie.

And, can I interrupt this bird trivia to just point out how amazing that is? Isn’t it incredible that we can just take something on that we’ve never done before, and still muddle through with success?

I mean, it hasn’t been super easy. We’ve spent months researching, learning, gathering supplies, and building shelters for them. But as with most things, deciding to do the work is almost harder than actually doing the work.

During the first week, I often woke up at 3 am, anxious about how they were doing. I ran downstairs, opened the door, and heard their soft, happy twittering; they were fine, all nineteen, scattered and sleeping and eating and climbing all over each other. They thought they were puppies, even though I reminded them they are quail.

But there was that one time they weren’t all fine…when we went from twenty to nineteen because one of them was cold and stiff under the heat lamp. So for a split second when I opened the door and saw them asleep, looking dead, I would get a little nervous. We remember those times when things weren’t fine, and try to guard ourselves against the uglier parts of normal.

Because it’s not just quail that look dead when they’re sleeping: See also deciduous trees, rose bushes, and hobbies that get shoved to the back of the closet. But bigger things, too – like creativity, achievement, solutions, dreams, and goals. Certain relationships. Breakthrough.

Each time one of those falls asleep, we wonder if it’s actually dead. Should we give up on it? Because we’ve seen death, and it leaves a little scar of trust issues and anxiety to work through every time we encounter anything that resembles it. Is this worth resuscitating? Do we nurse it back to health? Do we keep feeding and watering it in faith, or do we pull the plug and move on to the other 19 needs vying for our attention?

Some things just need time and surrender, but others need persistent attention.

For example, my houseplant that we affectionately call Anne Shirley. As soon as she (or it, I don’t care – don’t come to me with pronoun nonsense) feels the slightest bit parched or neglected, she wilts in the depths of despair.

The first time it happened, I thought I killed her for sure. Woomp – all leaves down, this one’s a goner.

But I felt the stems, and they seemed okay. So I gave her some water, and lo and behold – the next day, Anne Shirley was as perky as ever. Such a drama queen.

(My glorious fern, on the other hand, is a different story. We’ve started calling her Eleanor – as in, Dashwood – because if she’s neglected she will just slowly turn paler and paler, suffering in silence.)

So some things must be watered, and others must be waited for.

And many require both. We water in the waiting, not knowing how long it will take to see life again. These are the situations the Lord must move in, because you cannot force growth – overwatering results in death as much as neglect does – and He must perform the rescue because we’ve tried everything and still it is stiff and cold, not breathing: A loved one’s salvation, a child’s return, a favorable ruling. After we’ve done everything we know to do, we’re desperate for what only He can do.

But this is what He does. When life is in the red, He intervenes out of the blue in ways we never could have imagined.

And he said to them, “Why are you troubled, and why do doubts arise in your hearts? See my hands and my feet, that it is I myself. Touch me, and see. For a spirit does not have flesh and bones as you see that I have.” And when he had said this, he showed them his hands and his feet. And while they still disbelieved for joy and were marveling, he said to them, “Have you anything here to eat?”

– Luke 24:38-41, ESV

This life of watering and waiting is where faith and obedience intersect. It is the lesson of walking steadily on without constantly checking progress, checking email, checking notifications, checking the mailbox. Faith and obedience knows the answer is coming, and does not have to constantly ask “Are we there yet?” like a kid on a road trip.

You’ve done and are doing what you need to do. So give them time, they’ll perk up soon. Those situations might think they’re dead —- you need to remind them they are alive.

The trees outside know; the pussywillows are growing again. The time for things to wake up is here.

_______

Related: What if you see the rescue coming, and it scares you? The newsletter comes out next week and this is what we’re talking about. Sign up here if you need it.

keep it: the only way we maintain good times for future generations

Posted on by January 18, 2021

Over the last week with few exceptions, I’ve posted nothing on social media except scripture. I haven’t wanted to add to the noise. He has good things to say about this season, and that’s what I’ve wanted to focus on and draw attention to.

keep it: the only way we maintain good times for future generations

It’s been an interesting experiment and a good move for me, sort of like a fast.

Fret not yourself because of evildoers;
    be not envious of wrongdoers!
For they will soon fade like the grass
    and wither like the green herb.

Trust in the Lord, and do good;
    dwell in the land and befriend faithfulness.

– Psalm 37:1-3

It’s been Psalm 37 all week long. But if you’re paying attention (I know many of you are) you know that really, it’s been Psalm 37 for much longer than that. The events over the last few weeks, and even leading up to election week in November, weren’t huge surprises and they’ve been in the making for a long time.

Be still before the Lord and wait patiently for him;
    fret not yourself over the one who prospers in his way,
    over the man who carries out evil devices!

Refrain from anger, and forsake wrath!
    Fret not yourself; it tends only to evil.
For the evildoers shall be cut off,
    but those who wait for the Lord shall inherit the land.

– Psalm 37:7-9

On January 6th, we took the day off work and prayed. And then we went to church and prayed. Our pastor talked candidly about the risk of civil war, and I’ve thought many times about how we are facing this blend of civil and revolutionary war – civil because it is among our own countrymen, but revolutionary because of the cause and the nature of it.  But our pastor also talked about the grievous things it could mean for our kids and future grandkids, and I had not fully considered it in that vivid light.

Then one of the elders prayed, and he repented for his generation that allowed so much of this to happen. They were comfortable, he said; things were easy. And they took advantage of it, and the generation that came after took the ease and comfort for granted.

It made me think of this saying that I’ve been hearing a lot over the last year:

Hard times create strong men.

Strong men create good times.

Good times create weak men.

Weak men create hard times.

And it’s so true, I know it is, but surely we must be able to break the cycle. Because if we can’t, everything seems so hopeless – why should we work to create good times if it only results in weak men who ruin it for our great grandchildren?

Or worse, there’s that other argument we hear all too often: Why bother bringing children into the world at all?

But then, the same week, I also read this:

“What sort of world is this to bring them into? That’s another consideration.”

“A very cowardly consideration, dear. A mere shirking of responsibility. It’s a heavy responsibility, of course, a double one, responsibility for the children themselves and responsibility for the world they must live in. But I know of no better incentive for the building of a decent world than the possession of children who must live in the world you’ve built.”

– Elizabeth Goudge, Pilgrim’s Inn

God creates a beautiful, strategic curriculum for our lives: The warnings and repentance, the prayer and the challenge. And I realized again that we are not headed for war; we are already at war.

We always have been. But we lose ground every time we forget it.

What hasn’t changed is that we are occupying the land of a cleanup operation: We are in the middle of a spiritual war in a physical place, and it manifests itself in both ways. We see the spiritual and physical aftermath all around us.

So even when we get back to “good times” – the corruption is revealed, the fraud is overturned, the guilty go to prison (hashtag: we’re gonna need a bigger Gitmo) – we still need to remember that we are at war. We are always at war. Our hearts and culture are the battleground, and never more so when it looks like things are safe and easy.

We are still occupying and stewarding the land, on mission, until He comes.

There are quiet victories and struggles, great sacrifices of self, and noble acts of heroism, in it…done every day in nooks and corners, and in little households, and in men’s and women’s hearts – any one of which might reconcile the sternest man to such a world, and fill him with belief and hope in it, though two-fourths of its people were at war, and another fourth at law; and that’s a bold word.

– Charles Dickens, The Battle of Life

People’s hearts – ours, and those around us – are always and still the battleground. Hearts and identities and relationships will always need wholeness and fullness, in good times and bad, and that is where God wants to stake His claim. We till the soil regardless of the weather and circumstances because strong men create good times, but strong men can also create strong children. And those strong children will continue to inherit the land.

There were still children in the world, and while there were children, men and women would not abandon the struggle to make safe homes to put them in, and while they so struggled there was hope.

– Elizabeth Goudge, Pilgrim’s Inn

When the Constitutional Convention closed in 1787, Benjamin Franklin was leaving Independence Hall when a woman asked him what kind of government they had just designed. His answer was, “A republic, if you can keep it.”

And that is still our challenge today.

Turn away from evil and do good;
    so shall you dwell forever.
For the Lord loves justice;
    he will not forsake his saints.
They are preserved forever,
    but the children of the wicked shall be cut off.
The righteous shall inherit the land
    and dwell upon it forever.

– Psalm 37:27-29

In good times or hard times, we are still loving our kids and teaching them. We are still learning more and growing. We are still passing on values and standards and true education. We are still in the Word and abiding in prayer. We cannot let up and grow soft when times are easy, and we cannot let go and become calloused when times are hard.

The only way we do that is to remember that the war is never over – it is always raging in the spiritual battleground. We are not only meant to inherit the land, but to keep it.