Category Archives: grief

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.

turning it up: support for adoptive families comes to audio

Posted on by April 11, 2023

Here’s a confession that those of you who are regular readers here already know: I go in phases of sharing about adoption and special needs. Sometimes I forge ahead in it and share several posts here or on social media, and other times I pull back to recuperate.

It’s hard to share. It’s super personal. The issues are painful. But those issues need to be seen.

Not everyone will stop to notice. Most will probably keep scrolling — no shame, we all need a little mindless scrolling sometimes — and some will click “like” on the posts without even reading them because they’re too long.

I get that. I skim or skip posts sometimes for the same reason.

But we miss things when we’re always too busy to stop and notice them.

And adoptive, foster, and special needs families are collapsing from people being too busy to notice them.

These families are in our churches and neighborhoods — until they’re not. Until they give up on church or they give up on marriage. Until it all becomes too much because people are so busy scrolling past, giving a thumbs up to the concept of adoption but having no clue about what’s really going on in these families.

How do we move upstream to prevent divorce, depression, abuse, and suicide? How do we draw people into the church and community instead of driving them away from it?

By seeing people. But we have to look past the surface and stop scrolling for a few minutes to do it.

So I’ve collected my adoption posts in one place here. They are full of the stuff under the surface, behind the curtain, while we try to walk the line of privacy and transparency. They are by no means the full story, but they are enough to give the respectful, caring observer plenty to think about…and to send a message to other adoptive, foster, and special needs families. Here’s that message:

YOU ARE NOT ALONE. And you’re not going crazy. You are seen and loved and understood. 🖤

I know some of you are done with church. Some of you are done with marriage. Some of you, for the sake of younger children and your entire family, have been done with adoption and had to disrupt.

(If you’re not one of those families, that means they had to give up their adopted child to be adopted by another family — and face all the judgment, condemnation, and assumptions from a society that doesn’t know what goes on behind the scenes and is also unwittingly ignorant of the role they may be playing in the disaster and heartache these families endure.)

None of this should ever happen. Adoptive families should never feel alone and be left by the communities around them to quietly implode behind closed doors.

We can intentionally be part of the solution. 

And we need to be, because there are plenty of people who seem intent on being part of the problem, too busy reveling in their know-it-allness that they cannot fathom there might still be something to learn about this — like the Goodreads reviewer who gave Upside Down a mere 2 stars because I am “only an adoptive mom” and not a trained, lettered professional who actually (smirk) knows anything about attachment issues, mental health, or adoption.

That’s right; instead of studying for years behind a desk, I have only lived this out in my own home, 24 hours a day, for more than twice the amount of years it takes to get a bachelors degree. Clearly I have no expertise on the subjects of adoptive family support or adoptive parenting worth sharing.* #blessherheart

When I originally wrote Upside Down as a series of posts, I got emails, messages, and phone calls every day from adoptive, foster, and even biological parents who were going through the same stuff — but they thought they were alone. These were their most common responses:

“I thought we were the only ones who went through this.”
“I don’t know who to talk to.”
“I didn’t know how to explain this.”
“I thought we were alone.”
”I wish everyone we knew would read this.”

But you know what the most common response is from non-adoptive/foster families? It’s this:

“Whoa. I had no idea.”

No wonder these families feel alone.

It’s past time to change that.

And now there’s no excuse not to, because Upside Down is now available in audio (as you read that, you should hear it in a victorious sing-song voice, like TA-DAHHH!) and the first three segments are totally free and full of the inside scoop people needed yesterday, before they did that thing that triggered the adoptive kiddo to regress. So grab them here and share them with your friends, teachers, pastors, nosy neighbors, favorite aunt who stillll doesn’t get it, and anyone else who needs to know how they can truly support adoptive and foster families without unintentionally causing further harm.

Because we’re gonna change this thing. The world will see that what adoptive and foster families are doing is vital, but the work cannot be done without understanding and support. And we shouldn’t have to anymore.

*In case you’re wondering, I have similar inept, unprofessional, raw, untrained experience in pursuing God while being a mom of many, dealing with special needs and fighting depression and encountering other messy life circumstances in motherhood — so you should *definitely* stay away from Oh My Soul and ABIDE and Work That God Sees too, since I don’t have the right letters after my name and therefore have nothing worthwhile to share in those, either. Seriously, those books are only for the rest of us. xo

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.