Category Archives: special needs

groundwork: when spring seems a long time coming

Posted on by April 28, 2023

It is fully spring: the air is warm, the geese are back, and we put away all the snow gear and broke out the flip flops. Yep, it’s totally spring out there, except…no leaves yet. Not a sprig of new green anywhere. Everything’s still brown, but at least that means the snow has fully, finally receded.

Inside, almost eighty quail eggs are in the incubator in our bathroom, humming along in their little racks, waiting until hatch day in a couple weeks. And in this short, brown space between snow and summer, we’re strategizing fencing and gardening spaces outside: Do we fence the garden, or do we fence the chickens?

groundwork: when spring seems a long time coming -- Shannon Guerra

We had decided on the chickens, giving them a couple of paddock spaces to alternate between so they only destroy half the woods at a time while the other half recovers. But then we had a visitor this morning and now we’re rethinking the garden, because Peter Rabbit is back.

Grrrr. I wonder if we can just fence him…and find him a wife.

But there are other spring things, too. The boys and I planted a bunch of sunflowers and veggies in starter trays, and I’m inquiring about blue, green, and dark brown fertilized eggs so we can hatch those once the quail are done (because, #chickengoals). So yes, it is brown outside but we know other colors are coming, and we’re doing what we can to help them emerge.

Isn’t this what we do? I don’t see progress yet so give me something to do to hurry it along. Waiting is the worst. W-U-R-S-T, worst. We’re waiting for healing or income or favor or direction, and the watched pot is not boiling, the leaves are not unfurling. This season is too long, taking forever, and we have things we want to get to.

Speaking of wanting to see progress in seemingly fruitless endeavors, I’m cleaning off the counter – Legos, Sunday school artwork, the toaster, a bunch of pens and colored pencils. Some headphones. I go round and round this island finding more things that don’t belong here, putting some of them in their right places but most of them in a pile for the boys to put away because it’s all their stuff. SO MANY LEGOS. And books, and magazines, and miscellaneous treasures.

I wipe down the counter. I sit on the couch and finish my coffee. I turn back around to admire the clean kitchen island, and behold, from out of nowhere, a Lego speeder has landed on it.

How did that get there? I have no idea. Why did I bother cleaning in the first place?

What is the point? Are we making any progress, or getting anywhere?

It’s odd because we spend all summer and fall preparing for winter – storing supplies, gathering the harvest, making sure we have the essentials for a storm – but then we spend all winter dreaming of spring, and spring has to be prepared for, too. It’s this circle of learning and growing and failing and achieving, and then starting over again.

But we’re not starting all over, back at the beginning, because each time the cycle restarts, our soil is richer. We remember the things we tried last year, and how they fared (or flopped) and those considerations get added in like so much compost.

And that’s good to keep in mind because this afternoon I’m reading to the kids and this is our…(hold on, doing the math…) nineteenth year of homeschool (WHAT) and I’ve been scouring our library again for good books for 3rd and 4th grade. The books aren’t hard to find; we have a houseful of them. The problem is that I have been teaching 3rd and 4th grade to one kiddo for about that many years straight and it doesn’t feel like we’re getting anywhere. We have a similar problem with another kid who’s in her fourth year of second grade math. How many easy readers of great quality can you find, and assign over and over and over, until we’re ready for the next level? How many different second grade workbooks can we go through before the concepts finally stick enough to move on to the next grade? The answer is as long as a piece of string.

I have these two little boys though, and there’s freshness here because all the favorite old stories their siblings have read to tatters over the last nineteen years are new to them: Little House, the McGuffey readers, Paddington Bear. Finn sits next to me reading aloud as I stitch granny squares, and we go round and round and round as he strings the words together.

I have been through this book five times already and I know these stories. For almost two decades they’ve been the same words, but the kids reading them are different and I am different, too, sitting here listening to them. I just keep stitching these squares, and they are also the same thing over and over, just variations in color. The stack of squares is slowly accumulating.

We blame kids for constantly asking “Are we there yet?” but really, this is one of the mantras of adulthood. Are we making any progress when it feels like everything is still brown and bare? Are we doing this right?

Later it’s Reagan’s turn, and I wait for her to read her verse aloud. Her pauses take forever between words because she approaches each one as though it’s brand new, never been seen before, practically in a different language. And it might as well be, even though she’s been through this book twice now. There’s nothing else I can do while she’s plodding through it, because if I turn my attention away, she’s even slower.

Seconds between words. Loooong strings of seconds in this long, long verse that she’s not even halfway through. I hear the boys upstairs playing in their room, and wonder what they’re doing.

Pray for her while you wait, God says. You’re an intercessor, remember? This is what you do.

I have been praying for her for eleven years. I have prayed in circles, round and round, a lot of the same things but with slight variation. I know we’re getting somewhere, I’m just not sure where it is. It reminds me of the citrus trees in my office that I’ve been told may never bear fruit – they’re taller and taller every year, but still, no buds or blooming. I grabbed the shears yesterday and pruned them anyway, believing for the impossible and working toward it. And one of these days, maybe I’ll have lemons or limes to show you.

But sometimes the timing and progress of things starts to mess with our identity, tweaking our attention in the wrong directions. When that happens, our perspective gets out of whack as we think the slowness means things it doesn’t: I’m a bad gardener, I don’t know what I’m doing, I can’t win for losing.

We think we know who we are, but we don’t understand what God is doing with us or why He’s allowing certain events or what the delay is all about.

I am a mom. A special needs mom, a homeschooling mom, a mom of many. When the kids are doing well, I think I’m doing well. When the tomatoes and lettuce are growing, I think I’m a pretty good gardener. But when the spinach bolts or the rabbit cleans out the broccoli or a kid makes lousy choices, I’m back to looking at bare earth, and chewed branches, and I wonder when fruit is coming. I wonder if I am being the me I’m supposed to be.

So what’s going on when things still feel the same, like we’re thrown right back to the beginning?

The Lord is saying, Stop looking at the branches and the dirt, Love. Look at Me. Eyes on Me.

I am the vine, you are the branches; the one who remains in Me, and I in him bears much fruit, for apart from Me you can do nothing.

– John 15:5

So many times I have looked in the wrong direction and put my identity and value in outcomes and output, rather than remembering that I am a vessel the Spirit flows through. When I look toward where I expect fruit to be, I kink the flow. But when I look at Him, I am a conduit He surges through, irrigating infinite gardens yet unseen.

A wise friend explained it this way:

“…my heart needs to expand and firm up to carry more of God’s goodness to others…[but] He’s just pouring water through the channel and every day my heart is subtly increasing in capacity to care in ways I never imagined.”

– Katie

When we’re abiding and surrendered, here’s what the slowness really means: While we are waiting and preparing, He is preparing us. We are becoming more able, more equipped, more filled.

But you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.

— 1 Peter 1:9

Our reach is deeper and wider. We’re not just stitching in rounds, but in fractals. He is doing the work in us for expansion.

We do not make blankets, we make stitches…but the stitches make blankets, when you stick it out long enough. We look ahead to harvests, and different colors of eggs, and hutches full of quail. All these things, still unseen.

Now faith is the certainty of things hoped for, a proof of things not seen….And without faith it is impossible to please Him, for the one who comes to God must believe that He exists, and that He proves to be One who rewards those who seek Him.

– Hebrews 11:1, 6

We prepare for warmth in winter by making granny squares in spring. And in all of our preparing, He is preparing us.

We know what’s coming. The testimony of every year declares itself when spring unfurls, leaves bursting out everywhere, and we see how He’s shown up and brought victory.

Are we there yet? No, maybe not. But He hasn’t left us going around in circles on a flat plane. We are going in spirals, upward.

green light: choosing the wonder and risk of freedom

Posted on by October 19, 2023

Here’s a super fun craft: Take clear contact paper, cut it into dozens of hearts, and stick tiny squares of colored tissue paper to them. Hang them in the window. Gorgeous and simple, right?

It is, it really is. As long as you get someone else to remove the backing of the *&#%^!@ contact paper.

How do I know this? I spent the greater part of a church service recently peeling off these filmy contact paper backings in the preschool class and almost lost my Sunday School card. Turns out it requires intercession, praying in tongues, and friction. And not just that, because you can apply all three at once, right away, and it still takes a certain amount of time for the backing to release itself enough that you can gain purchase on the tiniest amount of paper real estate between your fingers to finally peel that sucker off.

YAY. “What are we learning about today, kids? Patience and sanctification.”

green light: choosing the wonder and risk of freedom

This has been the name of the game for years now. We went through another round of testing last week for one of our kids and a new report arrived in my email; some of the results were no surprise but others threw me for a loop. Conclusions were repeatedly “borderline,” “low,” and “extremely low,” and I reminded myself that this wasn’t an evaluation of my parenting, or our efforts, or our homeschooling, or our family. This was an evaluation of one child’s cognitive ability and special needs. It’s not the final word, it’s a hoop to jump through so we can take the next step.

I reminded myself of something I learned long ago, in a galaxy far, far away, when I worked with other kids who had special needs: No one is as bad as their diagnoses. And that’s comforting because there are all these numbers here: Percentile Rank 5, Percentile Rank 2, Percentile Rank .1…as in, one tenth.

Those first few years matter for children. Those 40 weeks in utero matter, too – the environment, the mother’s health and wholeness, the atmosphere she lives in. But then the birth, and infancy, and toddlerhood, and all those milestones: Kids learn to roll and crawl and walk while the brain lays down tracks with synapses and dendrites, creating an expanding atlas of highways and thoroughfares with every healthy relationship and interaction. Days of wholeness create whole new countries filled with possibilities, and the passport is built in the brain to take them everywhere those neurons can reach.

But when those tracks have been derailed, tangled for the first several years through trauma and neglect, the map is much more limited. The green lights are fewer; the behaviors and deficiencies confine the borders with red lights everywhere.

I cannot quite wrap my own brain around what to think of this report. On one side, grief and bewilderment: After a few hours of testing, this paper distills someone I love and have fought so much for down to such small numbers. I wonder what we could’ve or should’ve done to change the test results. I wonder if changing those results would’ve mattered, and realize it wouldn’t. His score is not his destiny, nor is it our appraisal.

So, on the other side is confirmation: This explains so much. No wonder this has been so hard. No wonder so many basic things have been such a battle. We have been trying to navigate this map with him, pushing on the edges of it whenever we felt brave enough to see if they would unroll and expand because we know these roads should go further. At one edge, we try the stoplight and it stays red no matter how long you wait. We go to another corner of the map and the same thing happens. We try another light in a different area and it turns green for a couple seconds, so we push the gas and start to move but the light turns red again before we’ve made it across, and whap, the edge furls tightly and throws us back to staring at the red light, looking in all the other directions, wondering which way to go.

And now we have some answers – not the kind that give you direction, of course, but the kind that explain the difficult terrain a little more. It’s not our road building skills or our map reading abilities. It’s sabotage; the lights are programmed this way.

Or put another way, we’ve been trying to go 40 miles an hour in a vehicle that won’t go past third gear. When you try to drive fast in a low gear, you can only reach a certain speed before more and more effort still doesn’t make you go any faster, it just uses more gas and wears out your engine.

We have seen the map expand here and there in small ways, and this process, too, has required significant intercession, praying in tongues, and friction. And even those aren’t enough, because you can apply all three at the same time and still take forever to gain the tiniest amount of new real estate.

There’s another section of the report that addresses adaptive behavior, and it says, “These scales address what a person actually does, rather than what he or she is able to do.” And this makes sense too; the issue is not so much ability, but willingness to walk in the risk of freedom. The map really is the same size as everyone else’s. The difference is that trauma and neglect in those early years curled the edges up tight to make the space left in the middle small, safe, and predictable.

And after almost eleven years now, I relate to this. We’ve lived with red lights for so long I don’t remember what living in the green light is like, though I know we’re called to do it. In those early years we repeatedly stretched toward freedom, and the aftermath was so severe we learned to be grateful for the small map, too. The edge snapped back so violently that we learned to approach it like an electric fence.

We are intercessors and we pray for healings and miracles. We don’t see them all the time but we do see them frequently and have experienced several ourselves – cysts disappeared, desperate sickness resolved, a hernia requiring surgery healing suddenly on its own. So when we adopted, this is where we were coming from: Yes, there would be challenges, but also yes, God is a healer and He wants to heal.

One of our pastors said recently that we, as burning ones, carry God’s fire and spread it to others – but also, we could go somewhere incredibly wet and have our own fire quenched. And when he said that, something inside me started to make sense.

Yes, Andrey and Reagan have been healed of so much. But also, we had no idea the depth of healing they needed or that the process of redemption would require even more layers of healing for our entire family. We were ablaze but a fire hose went off in the middle of us, and it took years to turn that thing off. By the time we did, there was still a ring of fire around our perimeter but the inside was filled with dripping, blackened coals. We’ve been drying out for years.

What I’m confessing here is that it’s easy for me to believe God’s miracles for you and others – I can even believe Him for a lot of miracles for myself and my family – but in this hardest area I have struggled with a soggy faith. We’ve contended for healing for our kids and their special needs (which are extensive, complicated, and often invisible to non-family members), but we’ve also lived with the red lights for years, the consequences of childhood trauma and the effects of it right in our faces on a daily basis.

We’re made to go places, though. We’re made to go past third gear.

You might have a situation like this, too – something that has restricted and held you back for so long that the risk of breaking through it seems scarier than the pain of living with it. The red light is safe, the green light leads to scary unknowns.

We live too close to these situations to see clearly, like a page of text held right up against our face. It’s too close, too blurry; my peripheral vision is gone and I know my perspective is out of whack. I know there’s more to this than what I see, but I can’t get this situation far enough away to focus. There’s no forty-thousand foot view, there’s just this jumble in front of me. I keep trying to put the pieces together but I can never see them all at once because they crowd too close.

I don’t believe our kids can’t be healed. But I fight cynicism and jadedness, afraid to get my hopes up too much. Isn’t it stupid, the games we play with ourselves? We try to protect our hearts from disappointment by choosing constant anxiety and suffering. Because that’s SO much nicer.

But we were made to live in freedom with the green light. So far I only know two ways to get there, and we can only do one of them for ourselves. The other we have to do for each other.

The first one is surrender. Surrendered living is choosing to live inverse, with your body turned inside out, vulnerability exposed. I have to let go of my fear, my desire for control, comfort, and safety, my worship of the mediocre that is less than what He’s called us to. I have to be willing to push the edge of the map and risk it electrocuting me. I have to process which red lights are real and which are fake, because a lot of them are green lights overlaid with fear and lies. And those ones? We can run those red lights.

The second thing, which can help the first thing happen, is to intercede wildly for each other. I want you to believe the things for me that I can’t see yet, as I believe those things for you. I won’t disregard your pain or make light of what you’ve been through. I won’t look down on you for the injuries you sustained when the edge of your map violently threw you backward; I have plenty of those scars, too. But I will believe for these things that feel so impossible for you because I’ve seen Him answer them before in others. I know your red lights are meant to be green, and the edge of your map can’t electrocute me. I know your coals are meant to burn brightly again.

When we pray over someone’s grief without judging them, we anonymously bring the fire to the hard, cynical, soggy places of their heart, and in the depths things begin to change. We might not see it on the surface but that’s okay because it’s not our business. Intercession and carrying the fire is our business – what the fire does is God’s business.

The edges thaw, then loosen and uncurl. We can start to see what’s hidden beyond, and curiosity overcomes our fear. The desire for freedom overrides desire for safety and control, and we look at the red light in front of us, wiggle the gear shift a little as we drive in circles around the perimeter, feeling the changes from second to third gear.

You know, something’s odd about that light; it’s darker than the rest. Look closely and you can see where the film is peeling.

It’s green underneath.

Someone must be praying for us because suddenly third gear no longer appeals and we surrender, dropping the hammer into fourth. We run the red light – there’s no opposition, no danger, it’s been green all along – and the map unfurls in surrender. We raise our hands in worship, exposing our vitals, and He reaches in and heals us.

guardianship: surrendering to a process of becoming more like Him

Posted on by January 30, 2023

Bedtime. I rolled over and tried to pull the pillow into place, and felt something tweak in my shoulder.

“Great,” I muttered, “tomorrow people will ask why I’m gimping around and I’ll have to tell them, ‘I’m 46, and I hurt my shoulder while wrestling with my pillow.’”

“Just tell them you did it in bed,” Vin said. “Let them use their imagination.”

And that did sound like a better idea.

guardianship: surendering to a process of becoming more like Him

Sometimes though, we can’t let people use their imagination. Sometimes their imaginations are less than gracious. And sometimes they believe the thing that seems most convenient but furthest from reality. Some things have to be clarified. And often the more important those things are, the harder they are to communicate.

For example, all week long I had a difficult conversation coming up. I had prayed and asked others to pray. But still, I was dreading it; I wondered if I should just not pursue it. Maybe I could get out of it.

So like every mature Christian, I tried that tactic in prayer:

I don’t want to do this, I told the Lord. I don’t know if I can do this.

You need to, though, He said. You know how to do it.

I don’t trust myself to do it right, though.

Do you trust Me? He asked.

Yes…but I don’t trust them. I don’t know how they’ll respond.

Do you trust Me? He repeated.

Of course I do. So I gave my feelings to Him (over and over, you know how this goes sometimes) and initiated the conversation. And the Lord gave me not only the wisdom and firmness I needed, but also the calm demeanor, composure, and discernment to say everything that needed to be said as I stood my ground. I did not waver; there was nothing on my list that was left unsaid.

God showed me again that He is faithful to work through us even when we feel unable and uncertain.

And that situation has been really good to look back on because a few months ago we learned about a whole new part of the special needs adoption process that we didn’t realize we signed up for almost eleven years ago. It’s called guardianship.

Maybe some of you are familiar with this. Maybe you’ve dealt with it and it seemed like no big deal. But for our family it feels like a Really Big Deal and we didn’t see it coming, and in some ways I feel stupid because it seems like we should have known about it or at least been given a heads up somewhere in the hours upon hours we spent in trainings and adoption paperwork.

For the equally uninitiated, it’s this: With their special needs and delays, our adopted kids will not be able to take care of themselves upon turning 18, when they magically become adults in the state of Alaska. This part wasn’t a surprise; we knew when we met Reagan that we were taking on a much bigger task than we originally thought and that she would always live with us. We do expect Andrey to be able to care for himself someday, though not as soon as he hits that magic number. What we did not realize is that continuing to care for them requires the legal activation of guardianship, and it is a fairly lengthy, invasive, legal process of courts, reports, and paperwork that is akin to the adoption process itself, except that it continues for the rest of our lives until we die.

Even after going through the original process, emptying our savings, and caring for them for over ten years, we must prove ourselves all over again to the government that we are able and willing to continue doing for our children what we’ve been doing all along. We cannot leave it to their imagination; it must be communicated. Again.

And that feels wrong to me. Oh, I know the reasons for it; you don’t need to lecture me. There have been exceptional cases of terrible people who take advantage of the system and do neglectful and sometimes horrific things to children. That is part of why we chose to adopt in the first place. The bigger problem is that more often than not, the terrible people out there doing terrible things to children are part of the system and work for the government.

So to treat all parents as guilty until proven innocent – over and over again – is unjust, inefficient, and a lousy use of resources. Putting the onus on parents who have already been through the fire and devoted years of their lives to caring for these children seems to be a “look here, not there” strategy.

But what can you do? There’s no other option. As it’s been explained to me, the reason it’s necessary is because Reagan cannot care for or make choices for herself, and without guardianship, if she were injured and needed to go to the hospital after she’s 18, we would not be able to make choices for her or authorize her care, either.

And yet if that situation arose, what then? Someone (a police officer, hospital staff, or some government worker) would arbitrarily end up making those decisions on her behalf, even though they would have no history with her, know absolutely nothing about her, and, ironically, they would not have completed the process of guardianship, either. But we, her parents, are required to jump through the bureaucratic hoops in order to continue doing for her what we’ve been doing all along. See how this works?

So here we go. We cannot leave things to the government’s imagination, so we will prove ourselves again by filling out more reams of paperwork and going through more hours of trainings and meetings so the government can check off their boxes, which is more important to them than actually spending all those hours with our children or nurturing our family, which is what good parents actually do.

Yeah. I know, I’m a little bent outta shape about this.

The pressure wells and I am aware of every breath because I am inhaling deeply and deliberately, willing the oxygen to go in and the stress to go out. And then I eat a caffeinated energy bar because augmenting anxiety with the jitters seems like a capital idea.

I go downstairs to water the plants, and as I look at these tiny seedlings, I persist in telling myself the truth. The feelings want to be louder, but the truth is what needs to win the day:

The Lord knows this whole process.

He is protecting our family.

He has prepared us and is continuing to prepare us.

What surprises us does not surprise Him.

This won’t be wasted time; this will be found time.

This will be for our good, because He causes all things for our good. This will expand the Kingdom as we surrender to Him in it, and faithfully walk through it.

Nothing can threaten us.

That’s the thing that really gets me: It feels threatening and invasive. It feels like it’s sending us back to the beginning, and the beginning was so hard.

But wait, no, we’re focusing on truth and not feelings, so I keep going back to the truth. I plant those seeds deep, deep down so they will take root and grow. And it’s all well and good while I’m watering my lettuces and garlic, but as soon as I’m back upstairs on the couch researching the process, anxiety steamrolls through, scattering resolve and making me take deep, shaky breaths all over again. And I’m right back to telling Him, I don’t want to do this.

You need to, though, He tells me again. Do you trust Me?

I do trust Him. I don’t trust a lot of people, though. We’ve been burned so many times when they’ve used their imaginations, appointed themselves as authorities, or assumed something that wasn’t true. I’ve learned that outsiders can be dangerous and painful to special needs families and kids.

For years Reagan had a tiny, tiny bed. We tried giving her a twin-sized bed and she hated it; she slept on the outermost top corner of it because…well, use your imagination. She had a tiny bed at six years old when we met her, about half the size of a toddler mattress. I don’t know what her experience with bigger beds was, and she didn’t like the one we gave her. So Vin made her a small one that she did like, and it saved space in a bedroom that was shared by three girls at the time. But if you came to our house and saw her tiny, tiny bed, you would wonder. And I wouldn’t blame you for wondering. But I would blame you if you judged us for it without knowing the reason behind it.

A couple years ago we went on a short hike with someone we’d only met once before. A few days later I learned that this person had noticed Reagan walked awkwardly (because she does) and kept stepping out of her shoes (because she does). They assumed it was because her shoes didn’t fit her, so they generously offered to buy her some.

Do you see how that’s not really generous, though? They assumed we weren’t providing for her, that we hadn’t bothered to purchase shoes that fit her. They didn’t ask us, didn’t know anything about her, had never spent any time with her. They just assumed that the way she walked and acted was because of neglect and lack of finances on our part.

(Side note: Our generosity should never puff ourselves up or put someone else down. It should never be to exalt ourselves over someone else. Our generosity isn’t from us anyway, it is from God and we are merely the conduit and clerk He is going through.)

Why, when people have the opportunity to use their imagination, do they use it so badly?

But here I am, doing the same thing, because I’m imagining that the people on the other end of this guardianship process will be as ignorant and unhelpful as many that we’ve dealt with before.

You’re all safe, the Lord says. I’m right here with you. Nothing can threaten and harm you.

As a friend and pastor reminded me a few days ago as he prayed for us, the government is on His shoulders. The Lord’s not asking us to surrender anything to the government; we’re just surrendering to Him.

It’s a process that must be completed and endured. Knowing we are sheltered, safe from threat or invasion, and assigned to walk powerfully through it keeps us peaceful in the process.

So He’s teaching us to trust Him in new ways with the unexpected. We can trust Him even when we don’t trust ourselves or others. We can trust Him in our vulnerability, with surrendering to a process we would not have chosen but can expect Him to bring good out of, because He is our guardian: our keeper, protector, caregiver, champion, preserver, sentinel, and shepherd. And He’s showing us how to be more like Him.

Praying for you,

Shannon

P.S. If you need some deeper content on being burned, dealing with forgiveness and resentment, and/or you want to stop feeling threatened by those who have burned you, this is what we’re addressing in the February newsletter for premium subscribers, coming out in a few days. Upgrade for that here – there’s a free trial and also a reduced group rate. And if you need this content but it’s not in your budget right now (have you even SEEN the cost of groceries lately?!) just let me know and I’d love to comp your subscription for free, gratis.

Also! I made a little announcement recently and shared the first excerpt of my new book last week. That’s available to premium subscribers, too.

P.P.S. Links for you!