Thursday, June 25, 2009

Transformational Trials

I never thought anything would trump autism in terms of the orbit of helplessness and wearying stress it can launch. I was wrong.

Learning Allie was quarantined in a Chinese hospital for swine flu did. I physically shook with tremors the first night after getting up off the floor in immediate, desperate prayer. As we gained information, the conjured up images in our minds were replaced with facts about her welfare. Foreign, yes. Scary, yes. Uncomfortable, at times. Dangerous, no.

You notice I haven't written in awhile. I am an internal processor so, apart from dispatching a mighty prayer team, I cocooned myself until light was visible. At a certain point, I became aware of how many blessings were coming as direct result of this trial. I considered starting a whole new blog to itemize them!

Lo and behold, she is home and internally processing herself--the numerous stretching experiences, cultural awareness, faith building, and fellowship that went down. For the most part, I will let it be her story since she is well able to tell it. And yet, I can't pass up passing on a few proven-once-again spiritual principles:

1. God is able to do immeasurably more than we ask for or imagine.

We sent Allie on this 9th grade class trip to broaden her world view, benefit from full immersion in a foreign culture, and expand her personal threshold of independence. Parents of last year's travelers said the China trip changed their kids. We got way more bang for our buck!

2. "When the praises go up, His glory comes down" (to quote a rockin' song by Karen Wheaton).

People from Yichang to Pittsburgh to Solana Beach were praying for these kids and their parents at all hours of the day and night. Intercession opens the floodgates for widespread blessing. Kids bonded with teachers; unlikely life-long relationships among peers are cemented; moms met back home for group hugs; marriages are being strengthened; international contacts are multiplying; nurses named Angel appeared!

3. Trials transform us.

John Knight writes a meaty blog covering disability ministry at Bethlehem Baptist Church in Minneapolis as well as applying Biblical truth on the Sovereignty of God to issues he encounters firsthand as a father. Wouldn't you know, he posted this today--the first day I have signed into in 19 days.

A peculiar transformation happens as the focus shifts from agonizing about the experience of a multiform hardship that is thought to await them to the actual experience of living with this particular human being and the multiform way in which they find themselves managing and growing in the process of facing difficulties as they actual (sic) encounter them. Theology, Disability and the New Genetics, p. 194 by Bernd Wannenwetsch

We don't often get to choose the trials which transform us. For some, it will be autism, for others divorce, quarantine, cancer, loss of limb, loss of job, or lost on a hiking trail. Whatever the challenge, all we can choose is how we respond. The degree to which we embrace it as God's agent for transformation in us, is the degree to which we grow spiritually.

Praise GOD! Allie is home, safe and sound, bigger and better, for the trial she endured, as are we. I am grateful for the joy set before us, that it flows not just from autism in our family but also from international travel and fellowship with so many faithful friends.

Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Hebrews 12:1-3

Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. Romans 5:3

My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:13-16

Saturday, June 6, 2009

I'm Mendinnng....

I awoke the morning after melting, still in the doldrums. Wanting to tell the whole truth here and avoid pat platitudes; knowing I had to write about the pits because depression among spectrum moms is a real threat, I spewed yesterday's post out as soon as the bus pulled away from the curb.

I was grateful for a couple hours privacy before I had to get dressed and take a new friend to the Healing Rooms today at noon. Although this had been arranged for awhile and I offered to help her with some very big fish to fry, it now seemed providential that I not only escort her but sign up for some intercession myself. As the emotional stew still smoldered in my pot, I thought, "it's a good thing I'm headed there." I need some kind of spiritual IV, directly into my bloodstream. An injection of energy, hope, motivation to lift me outta this rut.

Standing before an accumulating sinkful of dishes calculating how many more days I could leave them, the words--love that wilt not let me go--dropped into my head. Isn't that a hymn? Google, old, antiquated, gag, forget it, wait...Chris Rice version sung by John Michael Talbot, lyrics...Whoa! God is speakin' to me now.

I'd been thinking how far I'd let myself go in the four short days since Allie had left; how few steps separated me down a tunnel from a place I didn't want to be. How my diehard pledge to never let Reid slip into oblivion was in fact, slipping. How a woman overboard cannot throw a lifeline to another.

Alas, someone else holds my line and will not let me go. When I read the specific circumstances in George Matheson, a blind preacher's, life when he wrote the hymn I wanted to cry (again). These tears were a different flavor--of gratitude and awe and being known intimately by an infinite God.

Matheson had lost a fiance because of his blindness and now his sister was leaving him to marry. He had sunk into mental anguish because of recurrent loss and fear about his future. God had him by a tether and deposited the lyrics of that song into his mind for the benefit of generations to come--or at least for me! The very same God who wilt not let him go, wilt not let me go either, or you, or Reid.

Excited, I kept searching. It got even better! Matheson said about the hymn:

My hymn was com­posed in the manse of In­ne­lan [Ar­gyle­shire, Scot­land] on the ev­en­ing of the 6th of June, 1882, when I was 40 years of age. I was alone in the manse at that time. It was the night of my sister’s mar­ri­age, and the rest of the fam­i­ly were stay­ing over­night in Glas­gow. Some­thing hap­pened to me, which was known only to my­self, and which caused me the most se­vere men­tal suf­fer­ing. The hymn was the fruit of that suf­fer­ing. It was the quick­est bit of work I ever did in my life. I had the im­press­ion of hav­ing it dic­tat­ed to me by some in­ward voice ra­ther than of work­ing it out my­self. I am quite sure that the whole work was com­plet­ed in five min­utes, and equal­ly sure that it ne­ver re­ceived at my hands any re­touch­ing or cor­rect­ion. I have no na­tur­al gift of rhy­thm. All the other vers­es I have ever writ­ten are man­u­fact­ured ar­ti­cles; this came like a day­spring from on high.

God orchestrates the planet and delivered a love note to me in my kitchen on the very same day 127 years later (look at that date!) from one bruised heart to another about His promise to never let go. Cosmic, I tell you. My own historic day-after-birthday anniversary commemoration.

Then my "care-receiving" friend pulled up with flowers for me. How did she know? What did she know? She had just sensed and been compelled to buy them! I cried again (so much for stoic). To the Healing Rooms we both went, feeling better already.

The LORD'S lovingkindnesses indeed never cease, For His compassions never fail. Lamentations 3:21-23

But I trust in your unfailing love; my heart rejoices in your salvation. Psalm 13:5 content with what you have, because God has said, "Never will I leave you; never will I forsake you." Hebrews 13:5

Friday, June 5, 2009

I'm Meltinnnngg......

There are mini-miracles and there are mini-meltdowns. My preference for the former, does not exempt me from the latter. As much as I know and profess that "His mercies are new every morning," "He has a plan for good," and "works all things together for good," I don't always feel it. Yesterday, was one of those days.

Generally speaking, I am not a crier. Quite the opposite, many times I wish I could cry at retreats, memorials, or on cue when it seems appropriately feminine. One of the top #10 hurtful moments of my life was when someone accused me of being "stoic." What does that mean? I'm unfeeling, stubborn, too tough? Ouch.

Yesterday, I was raw and so, tried to hide. My heart felt like an eggshell that cracked at the slightest touch. My eyes warmed from within as tears flowed off and on each time I was alone in my car. My head ached from holding back the flow of pathetic, discouraging thoughts.

Life seemed so broken and sad, sad, sad. Recurrent loss drown me like a tidal wave.

Burgeoning under the surface was the fact that yesterday was the kids' birthday. Despite the fact that that is reason to celebrate, Reid and I ended up alone. Allie's 9th grade class trip to China left Monday night. She turned 15 surrounded by her peers. Her personal milestone was marked in a memorable way since their June 4th itinerary took them to Tiananmen Square on the 20th anniversary of the historic protest. I imagined her day as a swirling vortex of independence, fun, college-prep, global engagement, and new horizons.

Jim is in Australia on business with spotty Skype connection. A common occurrence for him to travel (and no picnic, really) but, part of the barometric pressure building in my tumultuous day. Reid's triennial IEP is next Tuesday which means I am receiving a barrage of assessments and recommendations from 5 different specialists which justify Reid's non-public placement and transition to a functional living track (as opposed to diploma bound). They also quantify his deficits in black and white detail.

These factors created a perfect storm of isolation, comparison, anxiety, and grief. I was untethered and before I knew it, thoughts were unraveling about this kid who only a mother could love (yet I wasn't). The gap between Allie's reality and Reid's existence was widening into a canyon. I was staring brokenness in the face and pining for what should be. She'll be driving and he won't. Three more years and she'll be off to college; he'll be...underfoot.

And then, guilt as I tried to not only keep Reid in his routine but also somehow create a meaningful birthday for him by my depleted self. I arrived at his school 30 minutes after lunch period with the blasted ice cream sandwiches feeling like a failure. (Are there no grocery stores in that neighborhood?)

Reid's case manager chased me down in the parking lot. Honestly, I was hoping for another hour of denial as I slipped out to the car to have my little break down (like Holly Hunter in Broadcast News.) He is awesome at his job and was preparing me for his written report of new goals. Nonetheless, he blew into the now spiraling funnel cloud of my emotions.

With his usual competence, professionalism even care, he recapped the current levels and probable goals for Reid with the summary phrase that he become "socially invisible." That hit hard; I had to evacuate fast.

That phrase irks me. I've heard his boss use it before and as much as I understand the importance and appreciate their hard working achieving it, it breaks my heart to hear it. What they mean to accomplish is have Reid blend in culturally, look like a typical teenager, and extinguish the red flags that give away his disability. I hate it as much as when Jim desperately begs him to "act normal."

Is that what we've come to? What kind of parent wants their children to be invisible? I want my children to distinguish themselves from the crowd; stand up for what they believe; and aspire to greatness! How have we stooped to such mediocrity?! Who made us compromise?

How can I hold these diametrically opposed goals --those of earth and those of heaven-- in some kind of simultaneous, healthy tension?

I used to believe, really believe that Reid would fit in somewhere and that he'd be whole somehow, healed, and that he'd achieve greatness. Am I the only one left with that hope? Can I sustain it alone? Does anyone else even care?

No one called to wish Reid a Happy Birthday until 7pm, when the two of us were already eating at Chevy's and couldn't talk anyway. Then both my credit cards were denied and I had to pay for our stupid dinner with a bad check.

Low, I'm telling you it was a low day. I am glad it's over. This is getting long enough.

Who's been there?

But you will cry out with a heavy heart, And you will wail with a broken spirit. Isaiah 65:13-15

The LORD is near to the brokenhearted And saves those who are crushed in spirit. Psalm 34:17-19

But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; 2 Corinthians 4:6-8

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Monday, June 1, 2009

Contribute an Essay

"How do you do it?"

Have you been asked that question?

Many of us are accustomed to fielding the question, "How do you do it?" either from long-time friends in prayer or innocent bystanders in line at the pharmacy, in a clinic waiting room, after an IEP meeting, on the church patio or at a school assembly.

As many times as I've heard it, I have not formulated a very succinct response. Most often I stammer in a mixed emotional stew of flattery, embarrassment, pressure and humility. So much depends on who's asking. What is there interest? Do they have time for the answer? Is it personally relevant? Inquiring for a relative on the spectrum? Or are they just as tongue-tied in shock, dismay, and pity? Is it something nice to say when "Your kids are so well behaved" doesn't apply? A euphemistic alternative to, "what a little terror" or "what's up with your hair?"

What if we told them? What if some joyful moms like my fellow bloggers and friends at the Autism File photo shoot gave words to what's behind those beaming smiles? What if we printed your 500 words or less answers and distributed them to people who want to know? People who are in the same boat and need a paddle.

Here's your chance. Consider this a Request for Essay Submissions answering the question: "How do you do it (with a smile)?"

I will post selected entries here as guest posts. I will also choose 10 of the responses at a time and compile them into a simple, handmade book for distribution (5x7 staple bound).

Think of it as an over-sized, special interest tract that we will distribute at our fall Concert of Prayer, the Walk Now for Autism event in San Diego, and around town to those who ask!

If your essay is selected, you will receive a supply of booklets to distribute in your town at church, school, support group...and local pharmacy!! I also plan to make them available to Joni and Friends, The Gray Center and Future Horizons.

I better get busy on my response...and can't wait to read yours. NPR's This I Believe site offers some good essay writing tips. Feel free to forward this link to other moms, dads, or full-time caregivers you know who have a witness and like to write.

Contribute an Essay

How do you do it with a smile?

"It" = raise a child with special needs

500 words or less

Deadline: July 31

Please submit entries to

Tell it to your children, and let your children tell it to their children, and their children to the next generation. Joel 1:2-4

Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect
1 Peter 3:14-16

Therefore, as it is written: "Let him who boasts boast in the Lord."
1 Corinthians 1:30-31

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