This current peace

May 22, 2015 at 7:53 AM by Susanna

When we’re up at the cabin, we’re taking a vacation from more than just school and jobs.



With no internet or cell phone reception, we’re taking a complete break from the outside world.




I don’t bother to take photos, knowing the memories will be preserved by our two older girls.  For me, this is more pressure relieved, more space to just be.




The rhythm to our days is stripped down to the simplest needs, natural as breathing.




Up in the mountains, we don’t even have to look at the clock on the microwave if we don’t want to.

Most of the time, we don’t want to.




Breathing out the pressures of myriads of responsibilities and the crowded competition of screen time and screen world.




Breathing in rest of body and soul, unhurried connection with each other and with the fresh beauty of this world God has gifted to us.




The littlest ones revel in the wide porch that wraps around three sides of the cabin.  We joke that this porch has more square footage than the downstairs of our house.








It was satisfying to have Joseph and Lindsay up there with us for one overnight.




They set up a tent, as did our older kids, and subsequently most of the children slept outdoors most of the week.








The week started out warm, but grew cooler, until it actually snowed the day before we left to come back home.

So the little ones and I snuggled up cozily by the fire and read books together, or napped in the cabin while the others explored the countryside for hours each day.








The most captivating daytime game this year seemed to be Lord of the Rings Risk.






It’s our time-honored tradition to trade Jelly Bellies before beginning our game of the evening.  We don’t commence until trading is complete and everyone has his or her favorites.  Fortunately, someone likes the detested mango and buttered popcorn flavors.  <grin>

Four happy boys loved staying up late playing games with us this year.








I spent a great deal of time lying about shamelessly, reading to myself, reading to little people, or doing nothing at all for a change.

Except breathing in…and breathing out.




We didn’t know it for sure until later, but I was emerging from the end of the dark tunnel.

Now we can turn around and see its gaping hole, back there.














Breathe in.

Breathe out.




Back home in our own little neck of the woods, I felt the battle of the Screen begin again, felt it more keenly than before.  I don’t want to give up the close connecting time we had in the mountains.  I’m longing for genuine and deep relationships with the real people in my life.  How can I keep some boundaries in place against the creeping competition of the screen?

What about this screen time is worth more than the real life relational time I’m giving up for it? 

It has to pass the Greater Good test.




That soap box summary helps to explain the lengthening distances between my blog posts and the as-yet-unanswered emails in my inbox.





Within our first week home, among other happenings…

…we jumped back into school for the home stretch…

…we celebrated Ben’s second birthday…

…all four of our family’s vehicles needed to go to the shop, but they obviously had to take turns like nice little boys and girls…

…Daniel tore the ACL and both menisci in one knee playing ultimate Frisbee, so has surgery ahead of him this summer rather than ultimate Frisbee…




…and we welcomed a house guest for the weekend followed by Mindy coming home from college, necessitating spring clean-up and transformation of the playroom back into her bedroom!


We wrapped up our family’s academic year on the 15th, but Katie still has weeks to go until her last day on June 10th.  To answer a blog commenter, her educational and other special needs are being expertly addressed by the staff in our local, small, self-contained multiple disabilities support classroom.  It has been an excellent choice for her.


Here’s Kate-Kate waiting for her school bus, enchanted by the springtime chirps, coos, warbles, and crows of the early birds in our neighborhood.



We were so sorry to hear that her teacher, Mr. Allen, is retiring next month after thirty years of teaching.  It looks like she’ll be able to stay in the same classroom, with the same paras who help Katie with eating and pottying.  We’re thankful for that continuity, and are confident that she will handle the transition well, as she has consistently shown remarkable resilience.




Mr. Allen was the right person in the right place at the right time for Katie.  He gave her such a good start and has brought her so far over the past two years.




We are so grateful for his kind heart and hard work with her.  He says about having Katie in his classroom, “She makes everyone’s day just by being Katie!”




Thank you, Mr. Allen, for your dedication and enthusiasm in teaching our happy girl.  We will miss you, and we wish you all the best!




Our local school district holds Ophelia Day each year, a field day for students with special needs.  Each student is paired up with high school students for the day.  Katie’s Ophelia Day buddies guided her through the various activities, and Katie was in her glory!

More bubbles


Where are they coming from


bubbles anyone


Balloon animals 1


Alcapa 2


Alcapas are really soft


By May 15th, we were so ready for the open windows and open-ended creative free time of summer, especially after our taste of it at the cabin.












I jumped right in to conquer a few organizational projects that had been put off until we laid our books aside.


The last day of school also traditionally means the older children set their tents up in our woods, and they are always eager to share their space with the younger ones when we give the okay.


And just this week, first thing Monday morning, I started another full time job that will last for an indefinite period of time.




In addition to keeping up with Verity’s neurodevelopmental program, I began potty training her in earnest.

Pray for me.  Ha ha!




If you have experience successfully potty training a child with Down syndrome and have tips to pass along, I am all ears!




I’ve laid in a hefty supply of thirst-inducing snacks, juice, both cloth and disposable training pants, and…uh…patience and realism.




She quickly mastered the ability to get all the steps in order independent of prompts or assistance–walking to the bathroom, placing the stepstool in front of the toilet, opening the lid, placing the potty ring on the seat, climbing up onto the stepstool, putting her pants down, and seating herself appropriately.

She now says, “Done,” when she thinks she’s done, usually when she is, sometimes when she wants to be.




However, she hasn’t shown any signs of awareness of needing to go before she goes, or made any move toward the toilet without reminders.




As with her older brothers and sisters, I’m focusing her on the skill of staying clean and dry rather than on producing something at a certain time.




She is taking it in stride for the most part, sometimes growing annoyed toward the end of my shift.  Yes, I’ve limited the process to a daily shift that starts as soon as I’m ready after breakfast and ends when Katie gets off the bus.  And there are days off when necessary.




This will most likely be the work of many months, so it must be as stress-free and doable as possible.  Do I remember writing years ago on this blog that Down syndrome is a marathon, not a sprint?




But for me, it is fulfilling and worthwhile work.  There aren’t words fierce or enormous enough to describe the love that wells up and overflows from my heart for her.




Katie enjoys every bit of summer fun she can get after school hours and on weekends, for now.




While at the cabin, I came to the decision to mentally and emotionally let go of my goal of having her bond with me.  I felt like I’d been flipping the same light switch on and off for more than three years with no appreciable effect, and it was time to accept that she may simply be unable to attach to one person in any normal and healthy way.




It didn’t really change how I interacted with her, just took the inner pressure off and made it okay with me that there was no real progress happening.

Interesting that she’s made obvious progress in bonding with me since then.  A feeding team who assessed her a year ago and again six months ago said a couple of weeks ago that it’s like she’s a different child.  Not only is she doing real rotary chewing and hardly doing any stimming between bites now, but they noted that in contrast to the past, she is very tuned into me.




We have no real confidence that we or anyone else knows anything about bonding as it relates to Kate-Kate with her unique history, so make of it what you will!  But we wonder whether it’s a phenomenon similar to a previously infertile couple conceiving shortly after giving up and starting the adoption process.

However it is, watching her gain some normality in relation to other people, light up and reach for me when she sees me, talk happily about “Mama,” and pull me in for lots of hugs and kisses is sweetness unsurpassable.  And I am indescribably grateful for the gift of this beautiful girl I love beyond words.




The remaining photos are credited to Mindy Walls, taken on Mother’s Day at the little playground near my mother’s grave and at Baskin-Robbins, where we stopped for ice cream afterwards.

We’re delighted that Mindy’s come back to be part of our family now, and proud of her for graduating with a degree in photography.  Check out her brand new website, Mindy Walls Photography, and if you’re local, maybe you’d like to give a fledgling photographer a chance and schedule a photo shoot with her!  In the meantime, her first priority is to obtain a driver’s license and a job to help pay off her remaining school debt.


Mindy Walls~



So does all this talk of furlough mean the battle is over?

I’m thankful to the Lord for this current peace, but to quote a reader of this blog–

“If living in community with other believers has taught me anything, it’s that God does not protect his children from the ‘worst case imaginable.'”


Mindy Walls~



Terrible tragedies should be occurring at every moment of every day in our lives, and it is God alone who holds them back from us.

And sometimes He does not.


Mindy Walls~



God has not stopped being God as a result.

He will bring about what He purposes to do, and friends, even in the most intense and terrible pain, He is bringing about only good for His children.


Mindy Walls~




God will do what God will do, and I’d rather be suffering with Him than fighting against Him.

More than that…


Mindy Walls~



Colossians 3:3 isn’t a promise of future blessing, it’s how things stand right now, in the present.

“For you died, and your life is hidden with Christ in God.”


Mindy Walls~

During all those years that I felt so safe in Him, and then during all these past months when I felt like an unsafe person living in an unsafe universe with an unsafe God–all this time, no matter what I happened to be feeling at any given time, one truth was and is and will always be true.

I have died, and my life is hidden with Christ in God.

I am eternally safe in Him.


Mindy Walls~












Big picnic this Saturday!

May 21, 2015 at 12:37 PM by Susanna

Photo credited to Mindy Walls~


The 9th annual Big Families and Friends picnic is again being held at a great location, with plenty of mature shade, a bathroom close by, the playground, ultimate Frisbee field, sand volleyball court and baseball field in full view of the pavilion, wheelchair-accessible walking paths, and a creek.  Please email for the park’s name and location.

It starts at 10 am with the meal at noon, but most families trickle in throughout the late morning and also throughout the afternoon. We have the pavilion until dusk, and there are always some families left chatting and cleaning up together as the sun goes down.

There is no refrigeration, but there is electricity for plugging in crockpots. There is a grill for those who bring their own tools and charcoal.

Please bring a main dish, side dish, and dessert to share. You will need to bring your own tablecloth, place settings and drinks for your own family. It’s a good idea to bring lawn chairs or blankets if you have them in case the pavilion is full.

There is usually ultimate Frisbee and baseball going on throughout the day, and we have also reserved the sand volleyball court.

The most common question we receive about the picnic is this:  How big is a big family?  Our answer?  If you consider yourself to be a big family, or are a friend who likes to hang out with big families, you are welcome! 

We hope many of you are able to join us on Saturday!  The weather promises to be perfect, and it’s always such a great day connecting with other families!


Photo credited to Mindy Walls~




Night shall end in day

May 9, 2015 at 6:48 PM by Susanna



“Then he isn’t safe?” said Lucy.

“Safe?” said Mr. Beaver. “Don’t you hear what Mrs. Beaver tells you?  Who said anything about safe?  ‘Course he isn’t safe.  But he’s good.  He’s the King, I tell you.”
~C.S. Lewis, The Lion, the Witch, and the Wardrobe




“[The Israelites] didn’t understand that the same pillar of smoke and fire that led them to victory would often also lead them into trials and difficulties to show them what was in their hearts.  They embraced the God of strength, liberation, and promise, but utterly rejected the God who would also walk them through the valley of death.

If he never took me into the wilderness, I would never know what was truly in my own heart.  I would easily deceive myself into believing that I love him well and am eager to submit to his will.”
~Barbara Duguid, Extravagant Grace




It is darkest, they say, just before dawn.

More than that, there is chaos, emptiness, and blackness just before God says, “Let there be light!”




March was the most emotionally chaotic, empty, and dark time I have ever known.  I was weary of the constant sadness and mental battle, overwhelmed by fear of more pain.  And then one night, I read this YES blog post.

At one time, I could have written that post myself!  As I read, I grew more and more agitated until I was muttering and sputtering.  By the time Joe came up to bed, I was so hopping mad I was pacing the room and forcing words out through choking tears.

You don’t need to hear the words I spoke that dark and disoriented night, but I ripped that blog post to shreds.  It was the first time I felt angry, yes, angry with God for failing us when we had trusted Him so implicitly and completely. We only said yes to His inexplicable call to bring Tommy home because we trusted Him to show up in a big way!  Just like the family in the blog post!  Like Abraham obeyed the inexplicable call of God by offering up Isaac, concluding that God was able to raise him up, even from the dead!

A picture began to form in my mind.

…a daddy calls to his young child to jump down into his arms.  “Yes, Daddy!” the child warbles cheerfully, and jumps off into space, knowing his daddy’s strength, trusting his daddy’s goodness, expecting to be caught in loving arms.  The daddy steps aside and lets the child crash down the steps and into the fire… 

I must be one of The Wicked, with whom God is angry every day, the sovereign God who has the absolute right to decide the end of those He has created.  Or else why did it have to be so harsh, so ugly, so painful, so permanent?  If a human parent punished his child in this random and cruel way, it would be child abuse.




It seemed I hadn’t made a lick of progress since the days right after Tommy died.  On the contrary!  The battle wasn’t letting up and I was losing my footing.  I cried to Him in distress.

Then on Easter Sunday morning, He spoke again into my chaos, emptiness, and darkness, “Let there be light!”




And there was light.

The fragile, pale tinge on the horizon of an early spring morning, but…light, not darkness.




One sunny Tuesday in the middle of April, I woke up singing for the first time in a couple of years.  I sang with pure joy in my heart to the Lord through Katie’s morning routine, put her on the bus, then rallied the rest of the children to finish their chores so our school day could begin.




Moments later, God sent an unexpected challenge that brought me back to the pain and the tears.

“Ah,” my heart wryly said, “I was allowed to be happy for two hours and forty minutes.”

Then He said, “Let there be light!”

And there was light.

Oh!  He waited to ask this of me now.  Six months ago I could not have done it.  He sent me a kind person who spoke empathetically to me rather than the cruel words I was braced for.  He purposefully chose a day when His joy was my strength to buoy me up rather than one of the days when I was in the depths.  He changed my perspective and flooded my soul with gratitude and praise!




But what about that mental picture?

And God said, “Let there be light!”

And there was light.

On vacation in the mountains, my oldest son gave it to me straight.

“That mental picture might be compelling, but it’s based on a lie.  It’s not the truth.  You need to replace it with another picture.”




And God said, “Let there be light!”

And there was light.

I had time to stretch out and breathe that week.  Time to start catching up on our pile of Christianity Today and WORLD magazines.

“Any mother’s fool could ask-receive-believe if God were a candy dispenser that automatically dispensed your Twix bar upon insertion of four coins. Where would be the faith in that? Where would be the stretching? Faith is always in the stretching.

In fact, psychologically speaking (if I may put it this way), faith is always only exercised in the not having.”

~Andree Seu Peterson, Faith is the thing: Believing in the absence of receiving




It comes down to a choice to believe in the absence of sight, and sometimes in the face of all that is reasonable.

I’m not a toddler standing in front of a candy machine.

He’s called me to walk a grown-up pilgrim pathway.





I choose to trust Him.  It’s His faithfulness, not mine, that has kept, is keeping, and will keep me on the path.

Lord, I believe! Help my unbelief!




Since our week of furlough at the cabin in April, I’ve been on a modified media fast, I’ve been strict about Philippians 4:8, and we’ve shrunk my world way down in order to preserve my mental and emotional energy for two new opportunities He’s opened up for our family.




Right now, they are tasks of joy, but we know that deliberately saying Yes to Him always means we are deliberately opening ourselves to more sorrow, even devastation.




But it seems as if now we understand faith for the first time.

It’s as if Abraham’s story went something like this.  God gives Abraham the incomprehensible command to sacrifice his son, his only son, Isaac, whom he loves.  Abraham obeys, believing that God can raise Isaac from the dead.  And then Isaac dies, and God does not raise him from the dead.  And Abraham still trusts God.  Then God gives him another baffling command, and then another.  Now he must exercise a faith that keeps on obeying after he knows from experience that God could be leading him into more agony than he had ever known was possible.  And then Abraham dies, never having received the things promised.  But he, along with all the others written about in Hebrews 11, dies in faith, still believing.

Because that is how the story has gone for most of God’s people throughout most of the world since the beginning.

I wanted to have “no matter what” faith, but I’d rarely needed it.  Most of the time, I didn’t need to exercise faith because He was answering my prayers before I even asked.

I was counting on Him for the wrong things, the outward, visible, superficial, obvious signs and wonders–the “God is good!  Praise God!  He’s so faithful!  What a blessing!  God has had mercy on us!” signs and wonders.  I wonder why we commonly reserve these words for what we perceive to be positive, happy times?  The specific provisions, the great news, the times when He shows up and says “Yes,” to our prayers, the split second deliverances and near misses, the healings.

If they are true of God at the best of times, they are true of God at the worst of times, or they are not true at all and should not be spoken.




Before Tommy, I could have given you all the right answers about God.  Now there’s a lot I’m not sure about.  But the truth I do know has been through flood, fire, and thick, black darkness.  Now I can attest, along with uncounted multitudes of believers who have suffered through the centuries, that my God is faithful in the deepest, worst kinds of pain.  His love for me is permanent, and of a magnitude I can’t comprehend.  I don’t trust Him to say yes to all our prayers and keep the worst of the worst away from us.  I do trust Him never to lose His grip on me.

Our much-loved son Tommy lived with us for a brief time marked by relentless, nearly unbearable pressure coupled with insufficient support, he died in a nightmarish, traumatic way, and I was very nearly overcome by terrible agony and turmoil of soul.  At the same time, in all these things and to eternity, God is good, He is worthy of praise, He is faithful, He has had great mercy on us, and He has blessed us far beyond anything we could ask or think.

The LORD gave, and the Lord has taken away; blessed be the name of the LORD.






“‘Oh, what are we to do?’ said Jill.

It was a dreadful question.  What had been the use of learning the Signs if they weren’t going to obey them?  Yet could Aslan have really meant them to unbind anyone–even a lunatic–who asked it in his name?

‘Oh, if only we knew!’ said Jill.

‘I think we do know,’ said Puddleglum.

‘Do you mean you think that everything will come right if we do untie him?’ said Scrubb.

‘I don’t know about that,’ said Puddleglum. “You see, Aslan didn’t tell Pole what would happen.  He only told her what to do.  That fellow will be the death of us once he’s up, I shouldn’t wonder.  But that doesn’t let us off following the Sign.’ 

~C.S. Lewis, The Silver Chair