Hope is Not a Strategy

“Hope is not a strategy.” A simple statement, but one that I’ve been chewing on the last couple of days. The context that I heard it in was at a seminar for churches on how try to prevent terrorism at your church before it happens. Ya know, the security specialist who has worked in the Israel airport and at the Mall of America in counter-terrorism says, “A lot of churches just ‘hope’ something bad will never happen to them. Well, hope is not a strategy… so you need to have a plan.”

“Hope is not a strategy.” That is so true. In life. In the Christ-following life. In autism life. Now, I LOVE hope, don’t get me wrong. I mean, look at what I named my blog. Hope is so foundational that if it doesn’t exist in the first place, there’s very little you can build upon at all. But, hope is a lot like a little blue pilot light. It must be present before the gas can be ignited that will actually throw out some serious heat.  Like a pilot light would never be able to cook your dinner by itself, hope does very little real work without the help of a partner.

Hope Always Pairs Up with Something

Hope itself very rarely just “works things out” like we hope it would. But, when coupled with action and faith, it is a force to be reckoned with. On the other hand, when hope is coupled with denial and fantasy, hope is horribly destructive and it eventually blows out altogether–a very dangerous place to be. Here are some statements I’ve either said or heard to let you know what I mean:

“I hope our marriage gets better.”
“I hope God will pull through and heal my child.”
“I hope autism gets cured one day.”
“I hope I don’t stay depressed.”
“I hope God hears my prayers this time.”
“I hope my child will just get better so I don’t have to get more therapy for him.”
“I hope that rash/lump/swelling/ache/pain will just go away.”

You know what? Sometimes these things really do work themselves out. But a lot of times they don’t. In all of those statements, the most important thing missing is YOU or me. If we don’t take the personal responsibility to partner hope with something of substance–either action or active faith–we’re going nowhere, sister. Because hope is not a strategy.

Expectant Hope

Granted, sometimes hope needs to be paired with patience, but even true godly patience is active with expectancy because something has already been planted. “Yes, let none who trust and wait hopefully and look for You be put to shame or be disappointed” (Ps. 25:3). The very posture of God-like patience, trust and hope is still active. It leans forward and scans the atmosphere always looking for signs of growth and breakthrough. But notice the proper target of our hope when it comes to spiritual things. It is not in the need being fulfilled, but hope is placed IN God, the person–our Daddy. “And now, Lord, what do I wait for and expect? My hope and expectation are in You” (Ps. 39:7). It’s trusting that His character is that He loves us like crazy and He inherently is good all the time.

Now, when my husband tells me that he’s going to do the dishes, and I say, “Well, I sure hope so.” I really don’t have a ton of confidence that it’s actually going to get done. We need to check ourselves regularly that we’re not pulling the “Well-I-Sure-Hope-Sos” with God. Real, godly hope is not mere optimism. It is expectation that something could happen or change for the better. You’ve got to have it. And you know when you don’t. Like Prov. 13:12 says, “Hope deferred makes the heart sick.”

Are We Really Heartsick?

I know I’ve been heartsick before, and it’s a bad pit to be in. Often my heart has gotten sick when I have put hope into an actual strategy that ended up not panning out like I hoped it would. We autism parents have got to keep moving, though, don’t we? Who has tried something like the GFCF diet, B-12 shots, a myriad of supplements, Respen-A, chelation, HBOT, NAET, speech therapy, OT, PT, ABA, on and and on and on, and not gotten the results you had hoped for?

I’ve done all these and more, and some have helped more than others. And I will continue to try new things because if you don’t try, you don’t know what you’re missing that really could help. When I try new things that could help my son, hope is activated. I have a strategy, a plan. I’m stepping out and taking a risk, and I’m optimistic that something could help and I’m working it. BUT, when it doesn’t help, I can get more pessimistic and sick about all the work and effort and money that didn’t produce much. I can also take it personally, like I failed somehow. It’s exhausting.

Now, hope paired with fantasy is not cool either. Marital issues, for instance, rarely just “poof” go away without some serious work on both people’s parts. You add a stressor like chronic sickness to the mix, and things come out in you and your spouse that you didn’t even know were there. “I hope it gets better” will go nowhere. But, with an action plan, perhaps some counseling, and practice, you can have a lot more hope that things will change. Are we willing to do the work? Are we willing to stop making excuses and work on ourselves?

When Hope Links Arms with Faith…

What I’m learning more than anything is that I can hope in my God, in His Word, and in His plan more than anything in this fallen world. He is not a man that He should lie. But, we’ve got to “up” our game when it comes to hoping in God. Our own hope arises from desire and expectation, but when paired with faith in our God, we come in agreement with what Jesus has already provided. There is a confident assurance that we place squarely in the the most capable Hands that we can have what’s already ours–even healing for our kids. Hope–that little flame–when ignited by faith IS a strategy. It can release unbelievable, supernatural things. Faith is stronger than hope, but faith without hope doesn’t make any sense at all. Hope, meet Faith, and dance!

 NOW FAITH is the assurance (the confirmation, the title deed) of the things [we] hope for, being the proof of things [we] do not see and the conviction of their reality [faith perceiving as real fact what is not revealed to the senses]. Heb. 11:1 (AMP)

This Pilgrim’s Progress

Sometimes you just have to pause and reflect on how far you’ve come. In the thick of a chronic condition like autism where you are working with today’s reality while stretching toward tomorrow’s possibility, you need to make sure you’re increasing in strength. While setbacks, emotional days and disappointments surely will come, the question becomes, “Yes, but at the end of the day, am I still moving forward?”

It’s an awkward place, living in the “inbetween.” I am neither at the start like we were when we first got Josiah’s diagnosis over 3 years ago, nor am I near the desired destination (I don’t have a clue what mile marker we’re even at right now, quite honestly). Life is being lived in the “inbetween.” It’s one of the most rugged places in life. But it’s the richest spiritual journey I have ever been on.

The word “journey” doesn’t really seem to suffice, though. But “pilgrimage” does. I’ve gained great comfort and fuel from Psalm 84 that describes a pilgrimage.

What joy for those whose strength comes from the Lord,
      who have set their minds on a pilgrimage to Jerusalem. (Ps. 84:5)

To put that into context, one author says, “A pilgrimage is holy journey with a purpose in every step. The pilgrim knows that life-giving challenges will emerge. New and old places in the heart are visited. Blessings are received and healing takes place. After the pilgrimage life is seen with different eyes and it will never be the same again.” That’s exactly what I’ve been experiencing.

In one translation, instead of saying that their minds are on a pilgrimage to Jerusalem, it says, “their hearts are on the road that leads to You.”

When they pass through the Valley of Weeping (Baca), they make it a place of refreshing springs. The autumn rains will clothe it with blessings. (Ps. 84:6)

So, I found myself in a valley of autism. And I was weeping. It was scary. It was lonely. It felt dark and rocky, ominous and depressing. And worst of all, at a time when I really needed to feel God the most, it honestly felt like I couldn’t find him at times.

But one thing I could have easily missed is the phrasing when they PASS THROUGH the Valley of Weeping. Pass through means that you don’t set up your tent there forever. You don’t let that be the place where you live. When you’re in the Valley of Weeping, it can feel like you’re never going to get out, but you will if you keep your mind set on God, your destination, your destiny. If there is one tactic that the Devil uses it is to get us to give up and accept our circumstances, to be paralyzed by fear, to stop praying, to be stuck in depression and hopelessness–and to live there. But God’s Word says to never give up and to persevere until God makes a way.

And in that valley, while you’re there, I’ve learned that you can MAKE IT a place of refreshing springs. That means rather than reacting and being kept spinning by our circumstances, we can choose to react differently. In our situation, when everyone around me was trying to show me ways to cope, I had to choose to hope. When depression wants to overtake me, I have to choose to receive His joy. When society shouts at me to “accept the circumstances,” something rises up inside of me and I chose to keep my eyes set on God’s promises.

When I feel unprotected by God I have to choose to trust him completely. Where there is death, I have to choose to speak life. Where there is fear, I have to learn to agree with faith. When I am tempted to worry, I have to choose to believe that God does not lie when he said he will work “all things together for good for those who love him.” That is making this valley a place of springs.

The Scripture says “the autumn rains will clothe it with blessings.” I think it’s important to note that in the land of Israel, the summers are hot and dry—no rain at all. Then, around October, it starts to rain. The autumn rains are what soften the ground that had baked hard during the drought of summer. And after those autumn rains, they could then plow and sow their winter grains. God is all about growth and restoration. I’ve come to know that he never wants to leave us in a broken, dry, and victimized state. He always is about turning things around and bringing life where there was lifelessness. He’ll even put the seeds in your hand!

 They will continue to go from strength to strength, and each of them will appear before God in Jerusalem. For the Lord God is a Sun and Shield; the Lord bestows [present] grace and favor and [future] glory (honor, splendor, and heavenly bliss)! No good thing will He withhold from those who walk uprightly. (Ps. 84:7,11)

Or as one translation says, they will go from strength to strength, increasing in victorious power. Have you ever experienced this? People saying, “I didn’t think I could do it, but I was stronger than I ever thought I could be.” With each experience in life where your fortitude is tested and you past that test, with the next big challenge you face, you will go into it stronger, more confident, more powerful when you have pressed into God for developing that strength.

    O Lord of hosts, blessed (happy, fortunate, to be envied) is the man who trusts in You [leaning and believing on You, committing all and confidently looking to You, and that without fear or misgiving]! (Ps. 84:12)

Jesus came to give us life to the full. I just say to Jesus, hey, fill’er up! I want all you came to give. Including healing for my son. I am standing in belief before a God who does the impossible and showed over and over again that it is his will and very nature to heal people—soul, spirit, emotions AND body.

This is the pilgrimage I am on. Not for comfortable Christianity, but refined in the fire, taking risks, committing all, and confidently looking to Christ, the author and finisher of my faith. The One that guides me through the “inbetweens,” because though I cannot always see what the destination, or even the next step in front of me looks like, he can, and he is with me. This I now know for sure! Do you know it too?

What if Christmas Was More Like Thanksgiving?

‘Tis the season, so they say, for comfort and joy. Yet, if you take a poll of adults in your life and ask them what emotions they feel at Christmastime, the words “comfort” and “joy” don’t seem to roll right off the tongue. ‘Tis more the season for discomfort and toys.

I’m not sure what happens in the short few weeks between Thanksgiving and Christmas, but emotions shift. On Thanksgiving day, we all seem to be reflecting on how grateful we are for what we have. Whether we have a lot or a little, we tend to swap soundbites of thanks. Thankful for the food in our bellies, a roof over our heads, freedoms we enjoy, and families who love us. We’re just more apt to go mining for reminders of God’s blessings that day.

Then, at the stroke of midnight, the pumpkins that we were looking at—and eating—are not as satisfying anymore. We turn around from our banquet of thanksgiving only to be confronted squarely by a giant crystal showcase of lack and loss. Bordered by flashing multi-colored Christmas lights. Accompanied by ironically cheery jingle jangle carols.

I’m not saying that absolutely every adult has encountered affects of “the showcase of lack and loss.” But if you’ve lost a loved one, Christmas brings on an ache for the one who left an empty chair. If you’ve lost a job or finances have been a mess, those toys you are compelled to provide for your kids bring added stress. Then there’s family—broken, bickering or miles away—that adds to the weight.

If your life has very little margin as it is, the “extra” of Christmas buying, wrapping, decorating, card-sending, cheer-spreading, program-going, and cooking can make you feel inadequate and overwhelmed. If you have health problems, the only gift you want is healing and it feels so allusive.

So maybe you feel guilty for your secret—or not so secret—bahs and humbugs. Perhaps you’re like me and you have an expectation of Christmas based on how you felt when you were a kid, and as an adult you’ve never been able to match it again. The awe. The wonder. The anticipation and delight. But you can relive it through your kids, right? The spotlight that shines brightly in my showcase of loss is the fact that my 5-year-old boy has autism and doesn’t yet speak, and I’m not sure he even knows what Christmas is. I know many others in this community that feel the lack of “typical.”

I asked God one day, would you show me Christmas from Your perspective? Like most things, if we look at it from a human standpoint we will try to fill this hole with our stuff, and that never really satisfies. Why should we want a “magical” Christmas when we could have a “supernatural” Christmas, anyway?

I was reminded of this: our good Father sent a baby to this earth to be God WITH us. That baby grew up to be a man who died and rose again so we could have Christ IN us, the HOPE of glory! He is why we celebrate. He alone is our inner source of comfort and joy. He is our Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. When I think of that, I am spurred to thanksgiving once again!

A Recipe to Share from the Apostle Paul:

I’ve found the recipe for being happy whether full or hungry, hands full or hands empty. Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am. Philippians 4:12 (MSG)

JOY: Are you killing it or filling it?

I just wrote this post for my church’s Marriage and Family blog. Thought there were some nuggets to share here too. For parents facing autism, it’s so important to rediscover and cultivate our joy.

When I was seven, I had a friend over to my house for the day. We were playing dolls or “Dukes of Hazzard” (or some such thing) when my mom called us up from the basement for lunch. Much to my surprise, there was my mom at the dining room table all decked out like a gum-chewing waitress with an apron on and a lunch ticket pad in hand. She said in a nasally voice, “Welcome to Diffy Daffy’s Diner. Come have a seat and I’ll grab you a menu.”

My mom had worked up a couple of homemade kid-friendly menus, and said we could each order whatever we liked. My friend and I were all giddy as we found two envelopes of Monopoly money at the table, and Mom recreated the full “goin’ out for lunch” experience for us two little ladies. Mom, or um “Diffy Daffy,” stayed in character for a good hour or so. It was a memory of unabashed joy that I will never forget.

My mom was a person who chose joy, and with that decision, God grew her creativity for cultivating joy in our home. As an adult, when I look back at that time in my family’s life, I realize that my mom would have had a whole lot of reasons to put joy on hiatus. No one would’ve blamed her. Money was extremely tight. She was taking care of elderly family members, and she had just lost her mom. With two teen boys and a stressed-out husband, there was always some sort of crisis or scrape that a family member was in.

Now a wife and mother myself, I am painfully aware of how important it is to cultivate joy for my home. I’m not great at this yet. Sure, when things are going well and I’m happy, I’m feeling joy-filled. But there are a lot of times when I have to fight for joy. After all, God says, “Be joyful always.” Really God? Always? Do you know what today was like?

In his book The 4:8 Principle (Philippians 4:8), Tommy Newberry says, “Joy is an outward sign of inward faith in the promises of God. It is a way of acting, and it is evidence of spiritual maturity. Joy is not a distant destination at which you arrive; rather, it’s a path you choose to travel each day.”

Three Ways to Choose Joy Today:

1. Train yourself to swap out bad thoughts with good thoughts. In Romans 12:2 we’re instructed to be changed within by a new way of thinking. Did you know that your conscious mind can hold only one thought at a time, positive or negative? The only way to eliminate a negative thought is to replace it with a positive, empowering thought. Having some key Scriptures to focus and meditate on will call out the best God has for you.
2. Pay attention to prime times for joy-killing or joy-filling. You can make or break your day—or the days of those in your house—by how you choose to approach these times: when you wake up, when you or your spouse come in from work, and when you go to bed. True joy has to be designed, discovered, developed and defended. It doesn’t just “happen.” Left to our own leanings, compounded by the stress of the day, we have to fight to value joy over funk.
3. Intentionally give away the very thing that you need. I was in a season when I was really feeling like I needed some encouragement but I was coming up thin. So, I went on Facebook and said it was “Encouragement Thursday—leave your prayer requests here and I will find a Scripture and prayer just for you.” God totally spoke to my heart with all of the promises I found for others. They were blessed and I was blessed. This also works by giving away little bits of your time, finances, serving, etc.

Give these things a try, and just see if the joy of the Lord doesn’t start to increase your strength for a much brighter day. Your whole family will thank you!

Trapped, But Pursued

This past month, I keep encountering a certain word. After I reflected on it twice, it continues to show up in different contexts. Now it really has my attention. I’ve been asking myself, “What am I supposed to learn from this?” Well, let’s see if by the end of this post I have that figured out.

The word is “trapped.” Trapped. I start to feel a little claustrophobic just staring at the word.

The first time it grabbed my attention was when I was looking at a blog post written by a couple from church that is doing missions work in Haiti. Mind you, I read this a couple weeks before the earthquake hit. They stopped to visit an orphanage–a mission for handicapped children–at Christmastime. Many children with severe mental and physical handicaps are simply abandoned, “left with little hope for someone ever loving or caring for them.” I looked at the pictures, and my heart broke. I thought of my own son. If he had been born in a different geographical location and under different terms, what would become of a little boy like him? 

This statement jumped out at me: “Several were in wheelchairs TRAPPED in a body and mind that didn’t work like ours. Others had bodies that served them, but minds that didn’t.” I cried. Who will love them? Who will go after them? My son has a trapped mind in a body that works and looks perfectly normal.

Shortly after,  I saw this YouTube video of a lovely, well-spoken 17-year-old with autism who was able to articulate what it was like when she was Josiah’s age. She said, “It was akin to being trapped. I couldn’t communicate or express myself in any way. I had to be taught how… they are desperate. They can’t communicate. They feel trapped… If you open the doors to try to get them to communicate you give them hope to get connected to this world, and ultimately to be much more successful.”

And then, the Haiti earthquake hit. I watched a news report about how there were little to no officials or equipment on the scene to try to recover people from the rubble. The reporter said family members and friends were desperate trying to get to their loved ones themselves. They were grabbing at concrete and trying to use hand picks to get through tons of rubble because they could hear the faint cries and screams underneath. An impossible task, really. Yet, how could they stop? They could still hear life.

I know it’s not the same thing, but it made me think about our kids with autism. Everywhere we turn, there seems to be obstacles to breaking through to them. Something completely blindsided us. We’ve been left with a mess and wondering “why?” The “professionals” are really not at the scene digging like they should or seemingly could with the equipment and resources they must have. But, it is parents and some friends–desperate ones–digging. Lifting off one piece of rock at a time with their bare hands, if they must, to reach their children. Because as long as they are “in there,” the drive is relentless to get them out.

Back to Haiti… Someone is not supposed to be able to live more than 72 hours without water. In 72 hours, rescue begins to turn to a recovery mission. Urgency gives way to a pace devoid of the same hope to pull someone out alive. But a little 5-year-old boy was found alive 8 days after the earthquake. A 16-year-old girl was just rescued alive after 15 days of being trapped. I’m thinking at this point that perhaps we should redefine “impossible.”

Two days ago, my husband and I took Josiah to a new place to obtain some speech therapy on top of the full-time therapy he’s already getting at an autism center. He started out just fine until the new therapist started placing too many demands too quickly and he became so upset and stressed. She thought it might be better for Joe and I to leave the room for a little while and see if she could calm him down. We could view the room from a television. We watched our little son go under a table in the corner and ball up into a fetal position, crying. It’s not that the therapist was mean or anything, it was all just too much for him. He was feeling trapped. He LOOKED very autistic at that moment. My heart began to collapse. “How do I rescue him? It’s been 2 1/2 years, and he’s still trapped. Words and understanding are still illusive. How do we break through?” I felt trapped.

A couple of years ago, I wrote a post about being a “prisoner of hope.” Essentially, being trapped in hope. This is the scripture it was based on: “Return to your fortress, O prisoners of hope; even now I announce that I will restore twice as much to you” (Zech. 9:12). That verse has been very empowering to me. But I realized something very profound in my own life recently. Hope is so good, but it is inferior to faith, and it’s not the same thing. I needed to lock myself into a prison of hope for a while to escape from being trapped by despair. But, now it’s time to experience faith‘s fight and freedom. Hope says, “It can happen.” Faith says, “It will happen.” Hope is really the springboard to faith, because it says, “Now faith is being sure of what we hope for and certain of what we do not see” (Heb. 11:1). Faith reaches for the results that hope maintains a yearning for.

Holding on to hope can keep you alive for quite a long time while you’re trapped. But faith is needed to bust you out to a new reality. It just takes a little bit of faith, Jesus said, and you can say, “mountain, ‘Move from here to there’ and it will move. NOthing will be impossible for you” (Matt. 17:20).

Nothing is impossible. So just know that I’m coming for you, Jo Jo! We’re pulling you out. I know you like tight spaces, but I want to see you in the wide open.

Merry Christmas?

Let’s talk Christmas. Ugh. I hesitate to write about this because I’m tired of being a downer on my blog. I’m sorry. But, maybe someone else can relate, so here goes.

This Christmas season, my emotions have been living somewhere between *sigh* and *cry* most of the time. Not that most people I see on a regular basis would know that. It’s just this icky heaviness that has nestled in on the top of my heart and in the pit of my stomach. I work at a church, so we are all over Christmas, working really hard to make it a great experience for the thousands attending. Why do I just want to fast forward past it?

Yesterday I went shopping for presents for Josiah. I was at Toys R Us and that “feeling” kicked in. Up and down the aisles I went looking for something that would make him smile. I was saddened that it was the toddler toys that he would like. The ones that light up and spin and make noise, and aren’t very complicated. Seeing all of the toys lined up there, I was confronted again at how far behind he is in his development. And then I saw about three typical little blonde-haired boys throughout the store that were about 4 yrs. old, Josiah’s age–one imaginatively playing with the train set, one talking a million miles an hour to his mom about a Bob the Builder toy he just had to have, and one just basically arguing with his mom that he didn’t want to leave. These are simple scenes that I am so attuned to, but they will likely not even stick in the short-term memories of most of these moms.

I realized that part of this feeling I’m wrestling with has to do with remembering the Christmases of my childhood, and not being able to “recapture” those magical, wide-eyed moments I had as a kid. We used to have about 20 people over for Christmas–grandparents, cousins, friends. It was festive! My dad, who went home to be with Jesus 10 years ago now, loved Christmas in a Chevy Chase sort of way. He decked out the houses with lights, and he’d play Santa for the community kids. He loved flannel shirts, and egg nog and oyster stew on Christmas Eve. Daddy’s gone. Both sets of grandparents are gone. Mom lives 1529 miles west. Brothers live about that far south. I feel like I’m stuck out here on the Island of Misfit Toys. We won’t be making the trek back to see my hubby’s parents together this year because it’s just easier not to with Josiah, at least until spring.

And, Christmas is lived best through the eyes of children. My only child doesn’t know it’s Christmas. Well, if he does, he can’t say. And all those stories about Jesus and Mary and Joseph, and Santa and Rudolph and St. Nick are just lobbed out there into the air in little installments by me, but he can’t respond with eyes all lit up. Asking questions and having to be shooed back to bed on Christmas Eve because he’s trying to stay awake to catch a glimpse of Santa. I want this for my precious little guy (thankful he’s such a happy little dude, though). I want this for us. But Autism just takes off with it like a bandit–robbing, robbing, robbing. Grinch that it is.

I think if more people were just allowed to be honest, Christmas time could be more of an opportunity for encouragement for the downtrodden than a magnified reminder of what’s wrong in their lives. From my vantage point, Christmas feels like this perfect picture for a lot of the families with young kids that I know. When life is good, it’s really GOOD. But what about those that hurting this Christmas? Wouldn’t the message of Christmas be so much more welcomed if we just said, “People, NONE of it really matters as much as the GOD WITH US part.”

To E. whose in her late 20s and lost her dad last summer, after her mom died of cancer just a couple years before–GOD IS WITH US!

To. J. whose husband is serving in Iraq and who just had to increase her autistic daughter’s seizure medication–GOD IS WITH US!

To K. who is struggling financially and can’t afford much for her kids for Christmas–GOD IS WITH US!

To M. who is feeling like giving up because this spiritual and emotional journey is so much effort–GOD IS WITH US!

To A. whose house is close to being foreclosed upon and whose husband’s contracting work has run out–GOD IS WITH US!

To A. who has felt hurt recently by some people who she valued as Christian friends–GOD IS WITH US!

Maybe there are some people we know in our lives that might be having a hard time this Christmas. How about we simply acknowledge that for them? The other day I sent an email to a friend just to say, “I wanted you to know I’m thinking of you. I bet it’s a hard time of year for you because you’re missing your parents.” She replied, “Thank you for knowing that it is hard and reaching out to simply tell me!” Then we don’t leave them without hope.

We can’t forget why we celebrate Christmas in the first place. “For to us a Child is born, TO US a Son is given…His name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace… His name shall be called Immanuel, GOD WITH US.” Which one of these do you need Him to be for you right now? I’ll take all of the above, thank you. Praise Him for such a Gift.

Truly, Merry Christmas!

…for He [God] Himself has said, I will not in any way fail you nor give you up nor leave you without support. [I will] not, [I will] not, [I will] not in any degree leave you helpless nor forsake nor let [you] down (relax My hold on you)! [Assuredly not!] Hebrews. 13:5 b AMP

Pitching My Tent in the Land of Hope

Ten years ago, when my youthful husband and I were more adventurous, we bought a little tent. We were going to a Christian music festival in Willmar, MN, and thought we could save a little money by camping out on the grounds. Now, neither of us really had much camping experience, but the tent just kind popped right open and was ready to go–so a no brainer, we thought. We could do this. It would be fun, right?

Tent and sleeping bags nicely tucked in the trunk, we headed off on a very ambitious 4-day trip. It was a crazy mixture of business and vacation. We arrived the first night and stayed in a hotel, because I had an interview a couple hours away in the Twin Cities that next morning. It stormed and rained like crazy all night and into the a.m., and that put my nerves on edge already. But, we had been looking for the opportunity to move from North Dakota to the Twin Cities and I just felt like things were lining up. I had already had two interviews for one job that I ended up not getting, but this would be the second interview for another job opportunity at a performing arts theatre. So exciting. My husband also had an interview lined up at a community TV station that would be the “bookend” of our trip. I just knew God was moving.

The second interview went great, and they said  I could call them the next day (this was before cell phones). So, we travelled back two hours to our music festival, full of optimism and ready for some good tunes. The ground was still a little soggy, but no matter. We found a spot for our tent and got it all set up so after enjoying hours of concert sets, we could just fall into our little nest. Well, we had a hard time finding the car in the dark–and the Kumbuya campfire antics by younger campers didn’t make for great sleep–but we made it through the night just fine.

Day 2 of the festival. Wow, it was windy! Really windy. But, the tunes were great so no matter. I found a pay phone to nervously make my phone call to my potential employer in the afternoon. While I did that, my husband ran back to our tent to get something. Within 10 minutes, our tune changed. I didn’t get the job. Brutal! And Joe showed up to reveal that our tent, along with our sleeping bags inside, was in a tree. Seriously, the little L-shaped tent “stakes” that came with the tent were not made to withstand a soggy ground and gale-force winds, apparently. Our tent was IN A TREE, and my new career dream was buried. This trip didn’t seem so fun anymore.

We pulled our tent down, and headed into town to find some real tent stakes and get some food. We nabbed the last tent stakes in the entire town at a local K-Mart, and then had some Sbarro’s pizza. We contemplated just forgetting the festival entirely and heading out. This was too hard. It wasn’t what we signed up for! But then, we bucked up. We decided we were not going to let this lick us, and we were going to enjoy the rest of the festival. Joe still had his interview, after all. We got back with a new resolve and replaced our 3″ stakes with 6″ stakes hammered in good. I decided I was going to worship God that night, even if I didn’t feel like it, and until I felt like it. RESOLVE!

Why did I tell this story that has gone on far too long, and what does it have to do with autism? I tell it only because I came across a great scripture in the Message translation the other day that reminded me of our tent episode:

I saw God before me for all time.
      Nothing can shake me; he’s right by my side.
   I’m glad from the inside out, ecstatic;
      I’ve pitched my tent in the land of hope… 
   You’ve got my feet on the life-path,
      with your face shining sun-joy all around.  Acts 2:25-28

 I feel like I have pitched my tent in the land of hope. Even faced with my son’s autism, I’ve discovered a little patch of hope to set my tent on while I’m on this journey. But, today, I came back and found my tent in a tree. We had a parent meeting at Josiah’s therapy center this morning and, well, it seems these last six months he’s plateaued in his progress a bit.  It’s causing his devoted therapists to have to get creative and rally again to push him further along. I looked at the mountain of “skills” on the progress sheets that must be achieved, and how relatively few are mastered, and I could feel the stakes starting to come up from our tent’s edges. Josiah turns 4 in one week, and time is not on our side like it once was. We’ve all worked so hard to do EVERYTHING we can, and I just thought we’d be further by now. Much further.  I want to live in a sturdy, secure house, not in a stupid TENT!

But through the tears, I find the resolve once again to hope in God.  I choose to believe him when he says he’s right by our sides on this life-path. He could change everything for our boy so fast. He is the Healer, the Provider, the Restorer, and so I’m reminded to try not to be overwhelmed by this burden that  I cannot humanly make right. I’m dependent on him. Wouldn’t you know it, I came across these verses this morning:

Clear lots of ground for your tents!
   Make your tents large. Spread out! Think big!
Use plenty of rope,
   drive the tent pegs deep.
You’re going to need lots of elbow room
   for your growing family…
Don’t be afraid—you’re not going to be embarrassed.
   Don’t hold back—you’re not going to come up short.  Isaiah 54:2-4

Okay God, bigger tent. Longer stakes. Not time to pack up and run. I won’t give up on hope. I will stay firm in faith. You said I won’t come up short. I believe you.

(By the way… Joe got the job at the end of that trip, and he’s still working there today. We moved to the Twin Cities, and that job that I was denied for, I ended up getting a month later when their hire didn’t work out. He’s a faithful God.)

Homage to Poems about Raising Special Needs Kids

Okay, here I go. I am about to offend a whole lot of people. I just have to say I’m sorry upfront and I hope you’ll forgive me. I’m headed into sacred territory. Coping territory. The place where good, caring people go to harvest sentiments to “make you feel better” about having a child that has some sort of special need.

One of the bloggy mommies that I read said it first. She just came out there bold and brassy and said it… “I despise the Holland poem.” GASP. You know the one… raising a special needs child is like getting on a plane expecting to go to Italy but you arrive in Holland, but Holland ain’t all that bad, it’s just different.

Well, I will see your Welcome to Holland poem, fellow blogger, and raise you the God Chooses Mom for Disabled Child article my Erma Bombeck. This is the one where God sees a really awesome woman with a lot of great qualities and says, “Let’s ‘bless’ her with a child who has a disability. It will teach her something amazing through it and she will envied and will be a saint herself because of it.” Hmmm. Isn’t that nice of God?

Next, another prose devoted to the character of our Heavenly Father: The God Said… poem. It my own words, I would say this is the series of the most frustrating answers to prayer I have ever seen. It’s like, “God will you… NO! If you would just… NO! I really need… NO! Could you please… NO!” Okay, glad I asked, I think.

Now, don’t get me wrong. There are some nuggets of truth in all of these sentiments and well-crafted poems. But, I might be going out on a limb to say that it makes people who aren’t going through the reality of raising a special needs kid feel better reading these than those who are. So, there is a rush to forward these links to your friend or family member to brighten their day. I’m inviting pushback here if I’m out of line. Maybe these do make you feel better.

Personally, I’m so thankful that I encountered these links though, along with some of the things that I have heard from very nice, well-meaning people in past two years. Things like: “God knew exactly what he was doing when he gave you Josiah as he is, because he knew you would be strong.” “You’re so creative, so God gave you a child with autism because he knew you would work really hard to play with him.” “Just think about what all God is going to teach you through this.” I found myself getting angry with God with each new phrase. How could he do this? If I was so good, and tried so hard to live for him, THIS was my reward? Not cool.

But, wrestling with all of this sent me on the most prized spiritual journey of my life. On December 12, 2008, I wrote this in my journal:

Here I am, Lord. I have some questions and I look to you for answers. I want to put aside any of my preconceived notions, my theology, religion, or advice from others, and I want to seek You for the answers. Straight up, what does your Word say?

> What do You say about healing–physical healing? Is it still for today?
> Do You allow bad things to happen to us to teach us a lesson?
> Do You bring sickness and disease to some people’s lives so You can use them for a greater purpose?
> What are the lies we tell ourselves about who You are and the place You have in our affairs?
> Do You withhold healing and help based on our level of faith and what we do?
> What are the blessings I’m entitled to as Your child?
> What does it take to get a miracle? Show me. I need healing for my precious son’s mind and body. How will it come?

I have devoted these past 8 months to studying God’s Word and listening to different sermons online addressing these questions. Scripture after scripture has re-energized my prayers, and has made me fall in love with Jesus all over again. Have I learned to be more patient? Sure. Have I learned a lot through suffering? Yep. Do I love my son and celebrate him more because of it? Certainly. Mostly, I’ve learned about God’s true character. I’ve been challenged not to put God in a box, and not to attribute things to him that are not in his nature. He is a good God, and he keeps prodding me on to hope, faith, and one day… victory.

I’ve said it before, and I’ll say it again. Either God’s Word is true, or he is a liar. He makes bold claims. “I am the Lord… I publicly proclaim bold promises. I do not whisper obscurities in some dark corner so no one can understand what I mean. And I did not tell the people… to ask me for something that I did not plan to give. I, the Lord, speak only what is true and right” (Is. 45:19).

What does he promise you? What does he plan to give you? Have you ever looked to see? Grabbing a nice Scripture verse once in a while for comfort is kind of like reading those poems I referenced earlier. It will give a short-term burst of consolation. But, God is not about simply consoling us. He is about saving, transforming, delivering, growing, directing, relating with, and loving, loving, loving us in the long-run. I challenge you to engage in your own journey to discover what he’s really like. I believe it will lead you into territory that looks more like hoping than coping.

He’s a big boy now

Josiah's new 'do.

Last Sunday morning my little Josiah turned into big boy before my very eyes. We decided to go to Great Clips and opt for a shorter haircut this time. As his moppy, wavy locks fell to the floor he began to look so much older. What happened to my baby? (By the way, I was so impressed with how well he did getting his hair cut this time–didn’t cry at all, and sat there so patiently!)

I must admit, I have mixed emotions about him getting older. With each month that passes, I get more nervous that he isn’t progressing as quickly as I would have imagined. Now he’s only 5 months away from turning 4. It just seemed like we had so much time to “pull him out of autism” when we started all of this nearly a hear-and-a-half ago. We got the biomedical piece in progress, and with the intense therapy and sheer will, we were going to make it! And sure, we’ve made progress, but why does it feel trudging through mud–or quicksand–so much of the time?

I love hearing about, reading about and watching videos about autism recovery. It gives me hope. Just last week, I came upon a couple of great stories. Karen Siff Exkorn’s recovered son was featured on the Today Show, and I gobbled up LeeAnn Whiffen’s new book, A Child’s Journey Out of Autism, in about two days. But something strange happened to me as I took these sort of stories in this time. While I was inspired and so moved and delighted by their successes, I felt fear start to grip me. That whisper in my head came, “It took these families around two years to go from non-verbal autistic behaviors to recovery, and their kids made steady leaps and progress quickly. Same with Catherine Maurice‘s children, and Karen Seroussi‘s son. You’re just not seeing that sort of progress. What if…”

And then I went to a local TACA meeting on Monday. It was a small group, so we had a lot of time to share stories. I was so moved with compassion for these moms–each one trading stories of unhelpful doctors, discriminating grocery store onlookers, insensitive comments they heard about “autism being the result of bad parenting,” insurance policies with autism exemptions, emptied bank accounts and piles of debt for therapies and treatments, diarrhea and constipation, temper tantrums, neighborhoods not wanting them to move in because “the house values would go down with an autistic child on the block.” One lady has a child who’s almost nine, and she said name the treatment and she has done it–even stem cells in Mexico. HBOT is finally helping, but he’s still severe.

I left that meeting, knowing the challenges of my own family’s journey, but realizing that so many people have it so much worse–and I can’t imagine the burden they carry. I just prayed to God, “Have mercy! Help these families. Help these precious children. We need healing and deliverance from this bondage. Bring our kids back to us.”

I admit, as Josiah gets older I feel sad that I’m missing those years when those precious little guys say the funniest things. One of co-workers talked about how her 2-year-old daughter picked up a piece of broccoli and said, “Oh cute! A little baby tree.” Am I really so selfish that my heart still drops when I hear stuff like that? I would do anything to hear Josiah say something like that. I’ve got the sweetest little boy who I just love to my toes, but I do feel like autism has taken who he was supposed to be, and I want to get him back. Like this video articulates:

As I was slipping into a bit of pitty party in my head the other day, I believe the Lord brought a new passage to my attention to remind me that my hope is in Him. No therapy or treatment or discovery can compare to the power, hope, and healing He can provide. Through Him, there is no “closing window” that He cannot open wide. I’m going after my kid! I’m getting him back and he will have a great future! Don’t you lose hope either! God’s Word is truth. There is hope!

Jeremiah 31:16-17 (Amplified Bible)

Thus says the Lord: Restrain your voice from weeping and your eyes from tears, for your work shall be rewarded, says the Lord; and [your children] shall return from the enemy’s land. 

And there is hope for your future, says the Lord; your children shall come back to their own country.

Our “Surprised by Autism” show coming soon

I’m so proud of my husband. He’s a tv producer on a local cable channel, and he debuts a whole 30-minute show about autism next month. It focuses on our personal journey so far with our Josiah, and on getting out information to those early in their journey about what options are out there to help tackle autism. It’s information that we wish we would have had without endless hours on Google trying to get oriented to this new, strange life of this “cause unknown, lifelong, incurable” disorder. Tough words to be faced with for parents who feel like they’ve just been smucked upside the head. It’s time for hope. It’s time for education. It’s time to help others down a road that we have walked for a year-and-a-half. I’m looking forward to a sequel, and praying for a recovery story!

It wasn’t easy for Joe to work on this. Oftentimes, the last thing he wanted to do was live autism, and then be faced with autism at work too. But, let it be noted that I didn’t put him up to it! It was his idea and I’m excited to see it air during Autism Awareness Month. We’ll upload the whole thing on YouTube next month. In the meantime, Joe’s supervisor had us on her show this month to preview the documentary. Take a peek… (by the way, they say the camera adds 10 lbs. The question is, “Man, how many cameras are ON me?!?)