chronic…peace?

My sister has battled a chronic illness for 12.5 years, one that almost killed her at first and kept her in a medically-induced coma for most of the next five months. She has been in and out of countless doctors’ offices and in the hospital too regularly. It’s quite possible that, in any given year, she sees more medical personnel than I have in my entire lifetime, and I’m her Big Sister.

Coco missed most of her oldest son’s first year of life–my parents and other sister helped to care for him while she was comatose–and her second son is more-than-miraculous given he was unintentionally conceived while she was taking drastic drugs. Her sons have never known their mom without a life-defining illness and they, with their dad, have proven incredibly resilient. We wish they hadn’t had to.

Summer before last, my dear friend had emergency eye surgery to repair a torn retina. Surgery should have fixed the problem, but for the last year-and-a-half she has been in and out of the doctor’s office two-five times per month. She has had additional emergency surgeries (one resulted in 472 laser blasts to her eye). She has received second and third opinions. She has had more than one allergic reaction to medications that have resulted in additional doctor’s appointments. Almost weekly she has had to change her activity levels and schedule to accommodate healing, and she has been advised not to travel more than two hours from the nearest retinal surgeon.

She finally switched surgeons for a more aggressive approach and endured an invasive fix-all surgery. Surgery successful, and she had post-op complications. Months later, even more. “Wait…” might be the most difficult word to hear when you thought you’d already done everything necessary.

Our Tween has cyclic vomiting, a migraine variant that, for the most part, bypasses the headache and sets him off hurling. Daily, and regularly, until the school day’s over, at which point he feels (mostly) fine. It sounds like faking, but no kid would intentionally vomit this often or violently. He loves school, and he would much rather be there than running for the toilet.

It came on 2.5 years ago and at first we thought it was an odd flu. When Week Two, punctuated by an entirely-well weekend, repeated the exact pattern, and then the whole thing repeated a few months later, we began looking for other causes.

A year ago–after his worst-ever cycle, three weeks of morning-to-bedtime puke–his neurologist put him on a preventative med that worked: he had an entire migraine-free year! Exactly a year later, it seems to have stopped working.

He is now in his third cycle of this school year. Different from every cycle before this fall, they are less violent; he can go back to sleep; and they last only a few days. He has missed thirteen days scattered throughout eight weeks, which means he’s missed one-quarter of the current school year. He likes his teachers and classes; he has friends; he wants to be there; and migraines have laid him flat.

Because these cycles have been different, we don’t know what to expect. Which means we don’t know what to do and our lives feel on hold.

On Tuesday I talked with my friend after yet-more disappointing news. On Wednesday I talked with my sister as she anticipated difficult doctors’ appointments. On Thursday, when Tween returned to bed rather than school, I heard my own voice say what my loves had said before: “I just want my life back!”

So I have been praying, “peace of Christ,” my new mantra. When in the car, I turn the fan on my face to remind myself that God wants to blow His Spirit, His peace, into my life.

I pray peace for Tween, as we expect anxiety is a likely player in his migraines (though he can’t articulate it). I pray peace for Guy, who so desperately wants to fix things that he gets angry when he can’t. I pray peace for myself as I day-after-day take short days in the office to come home and work nearby my kiddo, who by that time is usually attempting homework sans class instruction. I pray peace as our plans for days and dates and celebrations fall to the wayside of illness.

I pray peace for my sister. I pray peace for my friend. I pray peace for our world…

I want my life back…and yet this, for now, is my life. No bother comparing “old normal” to “new normal,” today is life and this is what I get. Peace of Christ. Peace of Christ, friends.patricksbreastplate

Creating a Life

Today’s guest post comes from a friend with whom I have cherished memories of galumphing through Scotland and England–drinking LOTS of tea, enjoying plays, memorizing poetry, and discussing life, love, future, literature and more literature and a scattering of theology (she was one of the first female theology students I met in college and she introduced me to the work of one of my favorites, Henri Nouwen). I admire her–and her current life’s work–more than she knows, and I’m thrilled she agreed to create for the blog. Having just returned from a week of family vacation, I too am thinking about the memories and experiences that create this life, the time spent, rather than the stuff accumulated, that makes all the difference.

Create Challenge #25: Jennifer Root Wilger

For some time now, I’ve been engaged in the all-encompassing work of creating a school. It’s been an amazing journey that has resulted in the creation of a student body, a dedicated staff, and a curriculum so unique that we had to create a new word, “socio-academic,” to describe it. Yet, strangely, as I approached this opportunity to write about Temple Grandin School, other creative endeavors have captivated my imagination. These are both related and unrelated, and I suspect it is partly the expression of my own creativity that prompts me to look for connection.

When I was assigned a blog date in July, I knew I’d be away from home, traveling with my family. As it turns out, vacation is a great time to think creatively. It’s not such a great time to think creatively about the work I left behind, and am soon to resume. Instead of thinking about work, I’m thinking about family. My 25th wedding anniversary is approaching, and my in-laws have recently sold the home that welcomed me into the Wilger tribe. To commemorate this beautiful spot, nestled in the mountains of Colorado on the Florida River, I created a photo book, which we delivered to my husband’s parents last week. As we looked through years of kids growing up, holidays, and summer fun, even my father-in-law cried.sf_trip1

Days later, on the same trip, we took our kids to San Francisco. Drawing on his college experience living in the city, my husband eagerly plotted a route that would lead us through his favorite neighborhoods. We spent the morning exploring and creating experiences to add to our collection of family memories. Unfortunately, while we were out and about, two bags were taken from our car. We had left nothing of monetary value – no iPhones, computers, purses, sunglasses. In haste, the thief had grabbed my bag of books. The bag I always bring with me on vacation, and mostly abandon in the back of the car. The bag of good intentions, too heavy to cart into one-night lodgings. The bag of half-baked ideas, and the resources that I hoped would power them to fruition.

I felt like I’d lost half my brain. But as I frantically tried to reconstruct the bag’s contents, I realized that we’d also lost a small stuffed monkey. Imbued with laughter and love, this little critter had been a part of our family for our children’s entire lives. Out of a huge menagerie of animals in a faraway place, he “found” us and followed us home. His real and imagined antics are a part of our family culture. Through our tears, we immediately launched into tales of his next chapter, in which he would, of course, continue making his mischief in the world. “I can just see him karate-chopping those thieves,” “I bet he’s on his way to Las Vegas…does he know they don’t accept bananas as poker chips?”

Our memories and experiences are the foundation upon which we create a life. The relationships we build (yes, even with inanimate objects) form and shape us in ways we can’t predict. Returning to the topic of creativity, I can see clearly how relationships and experiences from my entire life have contributed to my creative endeavors at Temple Grandin School. In the coming weeks, as we approach another school year, new conversations will generate ideas to augment or replace those that I’ve “lost.” New relationships will form even as existing bonds are strengthened. The school takes on a life of its own, a creative community powered by our shared life together. I can’t wait to see the surprising places creativity takes me, my family, and our entire school community this year.

JWilger fam

Jennifer Root Wilger is Executive Director and Co-Founder of Temple Grandin School, a creative community where intentional relationships and experiences enable students with high-functioning autism to recognize and realize their potential. Over the course of her adult life, she has been paid as a writer, editor, teacher, and caterer. These and many other experiences have enriched her life and family. Jennifer is married to Tom (for 25 years!), and they have three children, Micah (20), Jeremiah (13), and Josette (10). They live in Colorado with their 4 fish, and are currently seeking to add more mischief to their menagerie!

Thankful Thursday – Kickin’ the Door Shut & a Happy Dance!

school's_out_for-53737

By 12:20pm tomorrow, both our boys will be done with this school year.

Hallelujah!

This has been a particularly rough year for a variety of reasons. Junior year for Teen, filled to the brim with cultural stress even when our immediate little family wasn’t topped to our own stress limit. Unfortunately for all of us, his school counselor didn’t take time to look up at the student sitting before her when she advised he take certain classes (he shouldn’t have taken) and absolutely wouldn’t allow others (completely in his wheelhouse). All year long we have been paying for the mistake of not standing up to a school administrator while there was time. What a painful lesson we have learned…

Sixth grade for Tween, which means we now have one year of middle school under our belts. You’d think “experienced parents” might have this down but different kids transition differently, which makes for a different experience all ’round. We used to say that Teen leaped through 6th grade like a series of belly flops–fun in the air, painful on impact, everyone gets splashed. Tween has been way less adventurous and more consistently bewildered by the new demands on his life. A’s for effort, though, as this kid has been diligent in his hard work, sometimes doing two to six hours of homework per night (yes, WAY too much, and darn that slow processing!)…and then forgetting to turn it all in, or losing it (in his backpack) for weeks. Sigh.

But tonight I am truly grateful. Grateful we are done, mostly. I have been ready to kick the door shut on this year for, oh honestly, months. At least weeks. And yet I am also grateful for the free and fantastic education in our competitive small town. Grateful for the collateral lessons of organization, communication, self-advocacy, assertiveness, creativity, persistence, and more.

I am grateful for my children, these beautiful, amazing, creative gifts from God, each their very own unique human being. And I am grateful that for the next ten weeks we will not argue about homework. I will not have to wake them earlier than their bodies want to rush them out the door. I will not have to hurry them off to bed to get enough rest for the big day, big test/project, the next day’s measurement of their (supposed) worth.

I am grateful for summer and its lazy days slower pace. I am grateful for the adventures that await us individually and as a family–trips to San Diego and Mexico, Oregon and Monterey/Carmel as a family; Boy Scout camp for both boys; high adventure risk-taking for the Eagle Scout-Teen.

I am grateful for summer’s organic learning. Books to read just for fun. Scout badges that will precipitate new experiences and open their minds to new discoveries. Time to hike and climb and explore…just because.

I am grateful for a season of rest. I am grateful for friends we enjoy all year long, friends who have done this year with us, and who will now stretch out into this rest with us. For field trips and day trips ahead. For bowling and roller coasters and movies and beach days and swimming. For glasses of wine and laughter. For concerts and picnics in the park. For worship with our church family.

I am grateful, and so I have been doing my own crazy happy dance all day. Psalm 149:3 says, “Praise his name with dancing…” God has held us close during this chaotic year. He has gotten us through, and He has provided rest just ahead. Want to happy dance this joy with me?

The Kids are Okay

We have completed Week 2 of the school year and I can happily report that we are all doing OK! At least mostly. I think.

We’ve only had…
…one lost backpack,
…one slept-through alarm clock,
…one forgotten bike lock combination,
…one forgotten lunch box,
…one “oops, I forgot to turn it in” homework assignment,
…a couple “oops, I forgot to do it” homework assignments,
…one seven-hour homework marathon (A+ for persistence! And Fail-on-Mom not checking on too-long quiet child),
…one minimum day during which Tween and friends went into town for lunch – a tip-toe into independence – where he purchased one authorized half-eaten sandwich and drink and $20 of unauthorized gum and candy (ew!),
…daily rush-to-get-everyone-out-the-door miscommunication,
…and one soccer ball to the face, resulting in smashed glasses, two hours at the eye doctor (all good!), dilated eyes, and a late night of all-hands-on-deck homework.

Dilated crazy eyes!

Dilated crazy eyes!

There have been highlights, too. Like Day 1 of junior year when Teen allowed me to read him the biblegateway verse of the day, a Psalm, and then proceeded to read his favorite Bible verse to me, also a Psalm, including explanation as to why it was his favorite verse, what it meant to him and what it says about who God is – in general and in his life. Miracles like that do this Mama’s heart good!

Also, twice this week Teen has chosen to hang with me, sometimes talking, sometimes not, sometimes showing me videos he thinks are funny, giving me a glimpse into his mind and his world. Okay, so he’s been stalling on bedtime, but he’s also been choosing Connection with Mom on his schedule. Cardinal rule of parenting teens: be available when they’re ready to connect.

And Tween and I have still found time to read aloud together. One day soon he might figure out that he’s “too old” for this and decide that he prefers to read silently and alone, but I hope not. It’s an easy connection place, shared story making for shared experience. Plus, snuggles.welcome-back-to-school-clipart-2

Last night we attended Back to School Night at the middle school. Having done this before – albeit five years ago – sixth grade doesn’t seem so intimidating this go-round. We know our way around the school and many of the teachers are familiar, as are the courses and expectations. And yet… Teen experienced sixth grade as a series of belly flops, fun in the air and painful when you smack down hard. We know Tween, too, will take his share of risks and flops and that the pain will radiate to the whole family. It happens. By design.

And yet… We know Tween’s strengths and limitations. We know his gifts and challenges. We can anticipate where he will excel and which teachers will suggest a conference in the near future.

The temptation to give in to the anxiety can be overwhelming. But I don’t want to live in fear. I want to delight in my children.delight

Glennon Doyle Melton affirms that all children are gifted and talented, their lives containing glittering Christmas gifts, and God decides when they get to unwrap their special gifts. School insists that all children excel in the same ways at the same age, but that simply is not the case. Clearly kids are not all the same, as people are not all the same – and thank God! The world would be so boring, so inoperable, if we all shared the same gifts.

As parents we have a responsibility to regularly, daily, more often than not, communicate to our kids that they are okay. To do that, we have to truly believe it. Deep down in our guts we have to know that, whatever bumps our kids take throughout a day, they are and will be okay.

We each have the opportunity to delight in one other, but so often we should on each other instead. Like this talented mom, who condensed Things Moms Say in 24 hours into a less-than-3 minute song. Funny, and True, but if our kids only hear these things we all miss out.

I am making anew a decision to delight in my kids. I want their first and last glimpse of me during a day to be smiling, loving, delighted. I request that they “Kiss your Mama!” as they depart for the day and arrive home again, a sweet connection to remind them I will always be in their corner. Sometimes it’s forced, but it’s a good habit nonetheless. I want them to know that, Yes, You are Okay!

Of course I want my kids to do their very best. But their best may not always measure up and that has to be okay, too. I will continue to advocate for my kids as only a Mama can, but I will do it in faith that God created them exactly the way He intended them to be, with their own delicious blend of sweets and savories. They may not be to everyone’s taste, but they will always be my favorite flavors.love not worry

At times it will be a struggle to resist the temptation to fear. To not let their bumps reflect on my ability to parent, or my self-esteem. To be my kids’ rock rather than a puddle of my own worries. To stand strong against this competitive culture and its constant comparisons one to another.

Stand with me and let’s delight together in our children. Their uniqueness can make us laugh, can cause us to think new thoughts, to wonder – with awe – at who they are and who they will become. So much better than worry, don’t you agree? The kids are okay.

 

Jumbled

My kids don’t do transitions well. I know this, and sometimes it still surprises me.

During a still-early fall hallway conversation with Tween’s then-2nd grade teacher, she commented that Tween didn’t seem to be taking school seriously. Without missing a beat I responded, “Give him until Thanksgiving and he’ll be great!” She looked at me cross-eyed, as if I had given the most ridiculous answer. Maybe I had, but time proved me right.

What should surprise me is how little I recognize that I don’t do transitions well. Summer is more than half flown, we’re only weeks from the start of a new school year, and I haven’t yet settled into the rhythm of this season. And it’s about to change, another transition.

I can’t help comparing this summer to last. Apples to oranges but, as I want to continue to learn the lessons packed into our two-month Costa Rica sabbatical, I keep checking our blog to see what we were experiencing and learning last year.

The Costa Rica sun rises around 6am and sets around 6pm and I have never felt so physically in tune with the Earth’s rotation. Not an easy morning person, the sun beckoned me to new adventures each day, at least after a cup of coffee enjoyed facing this view:view

Leisurely mornings, adventure-filled days, and extended togetherness… Costa Rica sunset meant Family Time to eat, talk, play games or watch movies or read aloud. Of course Teen prefers friend-time to family-time, I get it. But a year ago we were making the beach safe for sea turtles and swimming in secluded waterfalls and mugging for the camera with toucans on our shoulders, making memories.

Guy and I took two weeks off for a camping vacation. And then every itinerary we discussed had some strike against it. We researched, Google-mapped, discussed, contacted friends, prayed, and persisted for hours over weeks before coming up for air with the same befuddling conclusion: we need to stay home this summer.

First world problems, I know. But I’m still disappointed.

So instead of adventuring out, we have ventured in to the crazy jumble of our garage to create a hang-out space for our kids and their friends.

We have vision, and still I’m overwhelmed. Cleaning the garage means face-planting in All The Projects I never got around to. I shafted some straight into the trash, donated others, and shuffled some back into the house. Projects covered every surface, and a few miraculously got done. And the panic-stricken late-night realization that the cleaners were coming in the morning meant that a whole bunch of projects went, yup, back into the garage. Oy!

Thank God Guy is an Energizer Bunny! Day 1 we began sorting and donating. Day 2 he pulled Too Much Stuff into the driveway and added storage areas to the rafters, then moved our extensive collection of camping gear up and out of sight. (Inside I’m screaming: “Don’t put it away, I want to use it!” Ugh.)garage

Day 3 we went to work, because that’s what happens when you work at a church and don’t leave town. To be honest, I’ve worked every day of what was supposed to be our vacation, because we are not on vacation, and I mostly work from home anyway. Sigh.

The garage is jumbled but better. I am jumbled, and a discipline of gratitude will make me better.

I’ve just finished reading The Seven Principles for Making Marriage Work. The surprise ending? A laser-beam focus on gratitude in two steps:

Step 1. For one week try to be aware of your tendency to criticize, to see what is missing, to focus on what is not there and comment on it. Try instead to focus on what is right. Notice what you have and others contribute. Search for things to praise. Begin with simple things. Praise the world. Appreciate your own breathing, the sunrise, the beauty of a rainstorm, the wonder in your child’s eyes. Utter some silent words of thanksgiving for these small wonders in your day. This will begin to change your focus on the negative.

Step 2. Give at least one genuine, heartfelt praise to your spouse [or child, neighbor, whoever] each day for an entire week… extend the exercise one more day. Then add another day…. When you meet someone new, look for what is special about this person. Appreciate these qualities. Remember, this all has to be genuine and heartfelt. Don’t be phony… Tell people what you notice and genuinely appreciate about them.

So I will refuse to criticize this summer, to see what is missing. I will be grateful for the progress we’ve made, the project we’ve undertaken. I will search for bright moments (Teen offered to help me do his laundry – progress!) and offer generous praise.

And eventually the garage will be clean, and I will be grateful.

Thrive

Both Teen and Tween have learning “differences.” [I hate the term “disability” because, as The Gift of ADHD points out, what society calls a disability comes with its own gifts.] They are both intelligent, and both have gifts that make typical classroom learning a challenge. They might do great at the right charter or private school, but we don’t have that opportunity. And homeschooling would be ridiculously bad for all of us. So we do our best in public schools. Fortunately we have access to extremely good public schools.

Tween had a bad child-teacher match last year. We advocated long and hard for him and yet perhaps insufficiently. I hate being the squeaky wheel and a bigger parenting goal is to equip my kids to persevere even when the going is tough, as it often is.

Prior to this school year, a neighbor suggested I chat with another neighbor, a school psychologist in another district. She read Tween’s file and afterwards recommended that we ask to have him retested as he was previously too young for certain tests that could be revelatory; she felt certain the school would concur.

They didn’t, and I left the meeting in turmoil. Great news: he seems to be doing great. Bad news: we don’t have a complete picture of him as a learner. Major potholes and obstacles likely await him on Education Road. As parents, we will have lots of work to do, meeting with countless teachers and administrators, meanwhile equipping him with various coping strategies and bolstering his courage.

It shouldn’t have to be this hard, but sometimes it is.

Our hearts break for our kids, for the hurts they have and will experience. No avoiding the entwining of a parent’s nervous system with her child’s.

Last week I had the opportunity to attend a Casting Crowns concert with some friends. Their latest album is Thrive, and the song Dream for You caught my attention:

Let me dream, let me dream for you
I am strong when you’re weak and I’ll carry you
So let go of your plan, get caught by my hand
I’ll show you what I can do when I dream for you

I have dreams for my life, but God’s dreams for me might be different. I have dreams for my kids; they have dreams of their owns; but God holds all of us in His hands. Of course I need to pray and make my best attempt at wise parenting decisions, but I need to let go of the worry and fear. Another line from the song says, “Come to me, find your rest, in the arms of the God who won’t let go.” I can’t change a single thing through my anxiety. When I trust God, I can rest in His arms.

God made these young men, “fearfully and wonderfully,” complete with their strengths and weaknesses. He has planned good deeds for them to do. He wants to know and be known by them, to walk through life in relationship with them, to love them. We all have a better chance at thriving as I make the decision to model faith in God and His dreams for them.