Heartwork

As parents of special needs kids, it is easy to get bogged down with therapy and numerous additional appointments. Tending our child’s heart may be swept aside. Not that this is our intention. But there is only so much emotional and physical energy each day.

I felt convicted to pray consistently for God to work in Jonathan’s heart. Not elaborate or laborious praying. Just simple dialogue. I began asking Him for ways to bring up His name naturally to Jonathan. To share one attribute of His character that I see reflected in his heart as well. Weeks went by. I felt peaceful about the way Jonathan began to ask questions and open up more freely with his own thoughts about God.

In the van after carpool one recent afternoon, Jonathan’s questions turned to heaven. What is it like? What if we get lost up there? How will we find God? I carefully explained that the wonderful thing about God is that He knows just where to look and find us. We don’t have to look for Him. He comes to us. Jonathan pondered that. I shared that God is building a special house, just for Jonathan. Sunlight paled for a moment compared to the bright smile that exploded on his face. Really? A home of my own? Do I have to share it? I smile, not missing the quiet thoughts tumbling around his mind. At six, he is the oldest of my four children. He often covers his ears with both hands and shouts we have too many children in our house. He expresses in those moments sentiments I dare not admit out loud, but think quite regularly myself.

Yes, Jonathan, a home all your own, and you only share it if you want.

So how do I get to heaven, he wants to know. I respond that when you die, if you love Jesus and have asked Him to live inside your heart, you go to heaven to be with Jesus forever. Oh. He immediately follows with, have I done that yet? Not yet. Can I do it now?

Absolutely! So he did. And my precious son is now my little brother in Christ.

My prayers continue as I ask God to grow my son’s love for Him and His truth. May all our children choose to walk in the truth and purity and righteousness of our Father. And may He grace us to do the same.

~ Rebekah

Thoughts from the Heart

This in an ongoing thought and struggle in our hearts – trying to figure out how and when to talk to our children about our son’s diagnosis. You may wonder how he and our children don’t know. Well it’s quite simple in a way. It starts out when they are only three years old. You say the A word (autism) here and there around the house. Then after a year or so you just stop saying it, plus you never really liked saying it. In fact, it always made you feel a bit sick to your stomach. I always preferred thinking of it as “the A word” whether I was thinking about it, saying it out loud, etc. Not sure why, I just did. I accepted it long ago, and I re-accept it every year around anniversary time. But I still don’t like the word.

So over the years, the word “autism” has kind of dropped off the radar because we excluded it. I guess we got to a point where we just realized we weren’t sure what we wanted to say to him about it. He is high-functioning and I guess we just hoped he’d eventually be completely indistinguishable. Even though we had therapists in our home daily it just became so normal for our family and we always just explained that our son needed the extra help, which he did. There were just some areas where he needed extra teaching to learn. Like some kids in school who need extra help in speech, or reading, or spelling in order to grasp it.

Well, lately – the oldest sibling age 10 is noticing more differences and asking some light questions. Meanwhile, the affected child is making comments about kids in his class at school who have autism. He mentions that so and so makes random loud noises, or so and so doesn’t really talk, or so and so flaps his hands. He never tells me about it in a mean-spirited way he just tells me matter of factly. Yet he never thinks anything he does is odd. He will say things like, “ah, my brain is just stuck!” Or, “I forgot, my brain just can’t remember for long.” But he never notices when he is making bad choices in public, he just thinks all people think idioms are dumb, and he doesn’t realize that his inability to stick with peer play dates is part of his autism.

So here we are… still in this place, still trying to figure out what to say, when to say it, how much to say. Still wishing we just didn’t have to do it. We can’t ever undo what we decide to share and that’s very scary. It’s unfortunate when one child is ready for the information but another may not be… especially when both children are equally important (our third child is younger and is too young yet to notice).

I had always hoped, as naive as it may sound, that it’d all go away and he’d be indistinguishable and we would not have to tell him. But it’s not going away. He is high-functioning, yes. But – - it is there. His brother notices the differences. Many people in our community and church know and it’s not going to be long before something, someday is said to one of our children or him about it. It’s inevitable – we live in a rural area. I do feel he’ll receive more compassion in his life when people know. What I’m most worried about is how he’ll view himself, how he’ll process that. He can be pretty emotional, over the top.

Praying hard and asking anyone out there who wants to add a stranger to their prayer list to pray for us as well – may God show us strongly the time, the how, the what, and the depth of how to do this with our son and his siblings.

Still finding my way… several years post diagnosis – - Kara

Remembering the “Why” (Taking My Cue from the Shepherds)

I overheard a conversation yesterday in the grocery store. We were standing in the holiday decorations aisle. I was trying to re-orient myself, look at my list, and decide my next step. The holiday decorations aisle was just a rest stop for me, a place where Cami could entertain herself with more-interesting-than-boring-groceries items while I collected my thoughts and my wits.

Two women pushed their individual carts down the aisle past us, talking as they went:

“I have Christmas decorations all over my house.”

“Really? It must look very festive.”

“Honestly, it’s like the holiday threw up everywhere, in every room.”

“Wow.”

“I don’t even know why I do it. Why do I decorate so thoroughly like that? I expend all that energy, and I honestly couldn’t tell you why I do it.”

Boom. It was as if God reached through that overheard conversation and wrapped His Hand around my detached heart. Less than a week ago, as I contemplated my impending December, feeling the familiar depression start to descend, I said those same exact words:

“Why do I even do this?”

Why do we rearrange the furniture to accommodate a seven-foot cut tree with shedding needles in the middle of our living room? Why do we drag the decorations out of the attic only to put them away again in a month? Why do we buy each other gifts, most of the time things we don’t even need and don’t really have the extra money to spend? Why do we hang oversized ornaments in the bare dogwood tree in the front yard? Why?

As the women walked away from the holiday decorations aisle, I silently prayed that this will be the year that God will help them find the “why” in their holidays. I asked the same thing for myself and my family. I know. I know: “Jesus is the Reason for the season.” I know that.

I just don’t always know that. You know?

8 In the same region there were some shepherds staying out in the fields and keeping watch over their flock by night. 9 And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them; and they were terribly frightened. 10 But the angel said to them, “Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; 11 for today in the city of David there has been born for you a Savior, who is Christ the Lord. 12 “This will be a sign for you: you will find a baby wrapped in cloths and lying in a manger.” 13 And suddenly there appeared with the angel a multitude of the heavenly host praising God and saying,

14 “Glory to God in the highest,
And on earth peace among men with whom He is pleased.”

15 When the angels had gone away from them into heaven, the shepherds began saying to one another, “Let us go straight to Bethlehem then, and see this thing that has happened which the Lord has made known to us.” 16 So they came in a hurry and found their way to Mary and Joseph, and the Baby as He lay in the manger. 17When they had seen this, they made known the statement which had been told them about this Child. 18 And all who heard it wondered at the things which were told them by the shepherds. 19 But Mary treasured all these things, pondering them in her heart. 20 The shepherds went back, glorifying and praising God for all that they had heard and seen, just as had been told them.
(From Luke 2, NASB)

Lord Jesus, thank You that all those years ago, You were pleased as man with men to dwell. Thank You that You still dwell with us today. Emmanuel—our “God with us”—please be the “why” in our every moment this December. Change our hearts; soften them to know You in new and wondrous ways this Christmas. Give us courage and boldness to declare out loud what You show us about Yourself, Jesus.

Listening for His angels,
Looking for His Glory, and
Pondering all these things in my heart,

Cassandra

A Timely Tweet

In the morning I lay my requests before you and wait in expectation. Psalm 5:3

God continues to surprise me how He speaks and reveals Himself ever so personally and often at just the right time.

I was recently processing a disappointment that I thought I had adequately dealt with and moved on.  However, I soon realized there was more work to do and I needed the Lord’s help with it – AGAIN!  So this morning, I searched my heart and confessed all I was feeling regarding this issue. I confessed my pain and brought Him my questions.

Then I returned to Psalms, where I had been reading, with no real answers or resolution. There were a couple of verses that jumped out to me and applied to other concerns in my life. I prayed through them and gave thanks for the insights I gained and the blessing of His Presence.

I woke up the rest of the family and went through our normal morning routine.  My son and I returned home after dropping my daughter off at school and I sat down at the computer to quickly check email and Twitter.

There it was.

My answer came through a tweet by pastor Rick Warren that the Holy Spirit powerfully impressed was for me in more ways than one.  It read: “Trust God’s timing. ‘Not yet’ isn’t ‘No.’ A delay isn’t a denial. Wait patiently.”

The Holy Spirit comforted me in a deep way through this truth and reminded me I really can trust His timing. I was filled with joy and peace about the situation and how the God of the universe would speak to me, even through Twitter. :)

I have learned that often times the Lord speaks to us not only for our benefit, but for the benefit of others as well. I am to receive His personal word for me and look for opportunities to share it so He can bless someone else. It’s just how the Kingdom of God works.

So friends, you really can trust God’s timing with whatever you are facing.  Although waiting is hard, it has the potential to move from ‘hardly bearable’ to ‘transformational’ when we focus on the Lord and allow Him to work in us.

Trying to wait patiently,

~Lynn

 

 

Pulse of Praise

When you parent a three year-old with Autism, God gives you a full-ride scholarship to the school of prayer, and I find the lessons I am learning expressed most astutely in the poem “Gratefulness” by George Herbert (1593-1633).

In “Gratefulness,” Herbert implores God to give him a grateful heart, and then goes on to compare himself to a beggar who works on God with the skill of a professional panhandler. God never satisfies this beggar. He always asks for more. He even says that if he doesn’t get his current request, then all of God’s previous generosity would be useless.

Despite this, Herbert considers that when God chose to save sinners he took our poverty into account. Heaven is like a beautiful estate (I picture Downton Abbey!) with beggars perpetually knocking at the door and filling the beautiful rooms with tears, and yet God gives gifts continually.

Remarkably though, God does not begrudge the beggars. In one of my favorite lines, Herbert says, “Nay thou hast made a sigh and groan / Thy joys.” God has the perfect heavenly melodies of the angelic choir to enjoy, but he has chosen to love “country-airs”–rough, folksy songs of poor country people. God regards our weak, sigh-filled prayers with as much love as the worship of heavenly beings.

So, Herbert cries out again and again, refusing to be quieted, until God grants him a thankful heart. Clarifying his request, he writes in the final stanza: “Not thankful, when it pleaseth me; / As if thy blessings had spare days: / But such a heart, whose pulse may be / Thy praise.”

Jude, because of his Autism, fills our home with sighs and groans as he attempts to communicate with the words he doesn’t possess. Admittedly, as parents, we don’t always enjoy those moments, especially knowing that a meltdown might lie just around the corner.

However, our prayers take on much of the same character for “we do not know what to pray for as we ought” (Rom 8:26 ESV). Yet, God has chosen to make our feeble noise his joys as he fills the heavenly throne room with the prayers of the saints like incense billowing forth before him (cf. Rev 5:8; 8:3-4).

With such a God as this, how can we be anything other than grateful? So, let us not be grateful only when the situation pleases us. Even in the midst of hidden disability, may our hearts beat to a pulse of praise!

(If you would like to read more from Herbert, I recommend A Year with George Herbert by Jim Scott Orrick.)

Making Good Florida Memories

We’re in Florida at my folks’ house, helping them do some much-needed cleaning and repairs. Our girl has been a trooper, bored out of her mind but coping. This trip hits all her sensory buttons: Florida smells different–sounds different–than Virginia. Her Grammy and PawPaw live a different lifestyle than we do. Even the time-zone difference messes with Cami’s equilibrium. I have to say: she is handling all of it beautifully.

Much better than I am.

I don’t enjoy coming back to my home town. I should, being that 1.) the Gulf of Mexico beaches are beautiful, 2.) I’m with my favorite people in the world, and 3.) the weather is just about perfect. It’s just that every time I visit my home town–my parents’ house–I end up losing my equilibrium. I forget who I am and start acting like who I used to be: so concerned with everyone’s opinion of me, changing how I act to meet what I suppose other people’s expectations are, caught in the performance trap of my growing-up years.

My husband promised me this time would be different. He promised that this trip, we would spend time together doing fun things, family vacation things, building-good-memories things. He’s kept that promise so far by surprising me with a romantic dinner and a night alone in a local hotel on the beach. (Thanks, Mom and Dad!) Cami was excited for us to go, even though we went without her. She hugged me about five times before we left. I’m not sure if the hugs were meant to comfort her or me. Maybe both.

The last time we brought Cami to the Gulf beaches was on Christmas Eve in 2008. It was unseasonably warm, but not quite warm enough to swim. The chilly water temperature didn’t prevent Cami from literally rolling in the surf, fully clothed in her winter clothes. Have I mentioned how Cami best experiences life kinesthetically? I suppose that  is appropriate for someone with dyspraxia.

Swimming with my girl in the Gulf has taken this trip a long way toward our building good memories. I doubt Cami will forget her first taste of salt water. Her verdict: “Blech! That’s nasty!” The waves’ movement and sound both calm and energize her. For almost two hours yesterday, she met the waves and jumped over them, just like I used to do when I lived here. Full-circle healing–that’s what God’s been up to with us.

I’ve kept my balance this time, as Michael’s wife and Cami’s mommy. I best experience life kinesthetically also, I think. I love how we’re experiencing life together. Cami figured out how to body surf while I looked for shells in the waves. Even though I found some beauties, we both giggled at how the tiny fish faked me out. I’d think I’d see something worth grabbing through the swirling sand and water; yet when I grabbed for it, I’d end up with a face full of salty water and a handful of sand. A few times, I grabbed for treasure only to lose my balance as the waves rolled in. I’m not a big fan of sand in my swimsuit.

It’s great fun, though, making memories with Cami. I can spend many hours of the day thinking I’ll never understand her, I’ll never connect with her, or I don’t know how to help her. Yesterday afternoon didn’t hold many of those thoughts of frustration.

As we waited in the water for the next wave, Cami said, “Mom. Look.”

I turned toward her just in time to see a school of minnows jumping in the waves. The fish looked like a shimmery-silver rainbow, all of them moving in the same direction, flying free of the surf if only momentarily. “Wow!” I was definitely impressed. “In all the times I’ve been swimming in these waters, I don’t think I’ve ever seen anything like that, Cami. That was cool!”

“You’re welcome,” she said, grinning from ear to ear.

I think Jesus is redeeming my home town in my list of favorite places to visit. Seeing it through Cami’s eyes makes all the difference.

Tomorrow, we’re going to the souvenir shops to find some little trinket to commemorate this trip. I’ll be looking for a wind chime with silver fish, I think.

So blessed to be Cami’s mom,

Cassandra

The Hardest Trip

We’re headed to the beach – the family home we haven’t seen in nearly 18 months. The kids are out of school, the weather promises to be idyllic. What for your ordinary traveler might be just a “nice weekend,” is for two war-weary parents with a disabled child, a chance to grasp at heaven. Matt and I may as well be first-classing it to the Maldives for as excited as we are.

The resort town is a perfect child’s playground – ice cream stands and pirate-themed trinket shops, a boardwalk and bikes to rent, and a playground and sand and lighthouses dotting the peninsula like giant candles. There are hours of activity in store for Noah, Grace, and Jesse. And from the second-story deck from which we can see the ocean, the adults can talk for hours in hammock chairs with the kids scrambling at our feet. It is very nearly perfect for everyone. Save for one tiny detail: the road trip required to get there.

Under “ordinary” circumstances, we should make the trip in about 5.5 hours. However, we’re lucky if we arrive in fewer than seven. And now, with the loss of modern conveniences like the car’s DVD player and CD player (thank you, Jesse for proving that both devices work just as well as coin slots as they do electronics), it’s going to feel a little like a Bonanza wagon train. Just imagine a very long, very hot, very boring, very crowded car ride with a child in the backseat repeating, “Bad, Jesse! Bad, Jesse!” Then imagine the offended child starts screaming, as anyone would, should their moral composition be repeatedly questioned. Then add another child, who will start whining that she’s hot, or that she didn’t really want chicken nuggets (even though she explicitly told you otherwise), and will extend her leg to Noah, whispering, “Noah, you better not touch me.” To which the first child will respond as anticipated, and the girl will scream with operatic shrillness and set every dog down interstate 95 to fits of barking. Then imagine all of this occurs in holiday traffic, with a whistling window seal resulting from a poor repair job, and a son who insists on eating the same sunflower seeds as his dad (and in the same abundance), which means potty breaks of more frequency and greater urgency than anyone could have anticipated. I usually need a wheelchair and a bag of IV fluids by the time we get there – just like some actress/singer/“celebutant” claiming exhaustion. Listen, I have no personal beef with Rihanna, but I doubt girlfriend’s taken a drive like ours.

So if you think of it this holiday weekend, will those of you without children, or with children who are better behaved, or with cars of better repair, headed on shorter drives – will you pray for us?

And then, sitting on the beach in what is left of the magenta sun, watching my son scream into the misty air as he delights in the roar of the coming tide, I promise to pray for you.

- Sarah

Waiting on Him

I have copied a section of one of my favorite chapters in the Bible, 2 Chronicles 20, below.  Sometimes I feel overwhelmed with everything I have to do and at this time in my life have some major decisions to make which I hate to do. The passage below is one I read before the Lord.  I pray it encourages you.   God is faithful.

After this the Moabites and Ammonites, and with them some of the Meunites, came against Jehoshaphat for battle. Some men came and told Jehoshaphat, “A great multitude is coming against you from Edom, from beyond the sea; and, behold, they are in Hazazon-tamar” (that is, Engedi). Then Jehoshaphat was afraid and set his face to seek the LORD, and proclaimed a fast throughout all Judah. And Judah assembled to seek help from the LORD; from all the cities of Judah they came to seek the LORD. And Jehoshaphat stood in the assembly of Judah and Jerusalem, in the house of the LORD, before the new court, and said, “O LORD, God of our fathers, are you not God in heaven? You rule over all the kingdoms of the nations. In your hand are power and might, so that none is able to withstand you. Did you not, our God, drive out the inhabitants of this land before your people Israel, and give it forever to the descendants of Abraham your friend? And they have lived in it and have built for you in it a sanctuary for your name, saying, ‘If disaster comes upon us, the sword, judgment, or pestilence, or famine, we will stand before this house and before you—for your name is in this house—and cry out to you in our affliction, and you will hear and save.’ And now behold, the men of Ammon and Moab and Mount Seir, whom you would not let Israel invade when they came from the land of Egypt, and whom they avoided and did not destroy—behold, they reward us by coming to drive us out of your possession, which you have given us to inherit. O our God, will you not execute judgment on them? For we are powerless against this great horde that is coming against us. We do not know what to do, but our eyes are on you.”

Meanwhile all Judah stood before the LORD, with their little ones, their wives, and their children. And the Spirit of the LORD came upon Jahaziel the son of Zechariah, son of Benaiah, son of Jeiel, son of Mattaniah, a Levite of the sons of Asaph, in the midst of the assembly. And he said, “Listen, all Judah and inhabitants of Jerusalem and King Jehoshaphat: Thus says the LORD to you, ‘Do not be afraid and do not be dismayed at this great horde, for the battle is not yours but God’s. Tomorrow go down against them. Behold, they will come up by the ascent of Ziz. You will find them at the end of the valley, east of the wilderness of Jeruel. You will not need to fight in this battle. Stand firm, hold your position, and see the salvation of the LORD on your behalf, O Judah and Jerusalem.’ Do not be afraid and do not be dismayed. Tomorrow go out against them, and the LORD will be with you.”  Then Jehoshaphat bowed his head with his face to the ground, and all Judah and the inhabitants of Jerusalem fell down before the LORD, worshiping the LORD. And the Levites, of the Kohathites and the Korahites, stood up to praise the LORD, the God of Israel, with a very loud voice.    2 Chronicles 20: 1-19

LORD, I do not know what to do, but my eyes are on You!

Waiting on Him,

Gabrielle

Psalm 80

Whenever scripture repeats itself, I take it as a holy nudge to pay extra close attention to the repeated parts. God’s Word is powerful; when He repeats Himself, those words are probably extra powerful indeed. One verse repeats three times in Psalm 80, almost word for word. The year our family descended into chaos, this psalm was my heart’s cry.

We’d been homeschooling for a few months. Cami couldn’t read, she couldn’t write, and she melted down at my every attempt to “do school” with her. Most days, we both ended up crying and giving up on school by lunchtime. The next day, we tried school again, with the same result.

Restore us, O God; make Your face shine on us, that we may be saved. (Ps. 80:3)

I expected homeschooling to fix Cami. I expected my educational training and experience to be all my daughter needed. I bought the best-reviewed curriculum. I joined my church’s homeschool co-op group. I composed a daily schedule and determined to stick to it. Still, by lunchtime every day, both Cami and I dissolved into tears of frustration.

My husband and I fought a lot with each other, disagreeing about Cami’s motives, about how to discipline her, about how to help her. Those days, it felt like we didn’t agree about anything. Michael and I both got angry enough to leave the house, just walk out and drive away to try and clear our heads.

Restore us, God Almighty; make Your face shine on us, that we may be saved. (Ps. 80:7)

We yelled a lot in our house. I felt defeated because I didn’t want to yell a lot in our house. I grew up in a house like that. I didn’t want that atmosphere for my little girl. I didn’t want that atmosphere for any of us.

It would start with my asking Cami to do one thing, and then another thing, and when she was finished with that, a third thing. My request was followed by Cami shutting down because she couldn’t process all my words. Cami’s shut-down was followed by my rising frustration coupled with repeating all my instructions in mostly impatient tones. My tone of voice struck Cami’s frustration and failure place: she wanted to do what I’d asked; she just didn’t understand my instructions. By the time Michael returned home from his extremely stressful on-call-24-7 job, all of us were yelling.

There was one weekend–the weekend–when everything disintegrated. I found myself knelt down at the end of my bed, sobbing, begging Jesus to fix us, to fix all of us.

Restore us, LORD God Almighty; make Your face shine on us, that we may be saved. (Ps. 80:19)

Six years and much heart work later, God has been faithful to His Word that He repeated. He has restored my family. We’ve found a way of homeschooling that works for us. We know Cami’s sensory processing issues and how to successfully navigate them. We don’t yell much anymore, unless it’s to cheer each other on.

Yes, we’ve worked hard to change how our family interacts. Yet only God–the LORD–can take credit for the life we have now. Our restoration is His doing. Our fruitfulness comes from His Hand alone.

I am so very grateful He does indeed shine His face toward us.

Cassandra

On Ebbing (and Flowing)

This week, life is both ebbing and flowing.

I am determined to respond better to my circumstances.  I have put some restrictions in place on my eating, which had gotten out of control with all of my business travel and stress of life.  I am waking early to pray and I am inviting others into my life to actively pray with me.  I have started taking walks in this beautiful weather we’ve been having.

I suppose this is the “flow” portion of my life.  On the “ebbing…”

Things with Ben’s health took a turn for the worse this weekend.  I was in DC for a 5 day conference.  My father took my children and Ben was home alone.  This is the first time we’ve tried this arrangement during my travels.  During the weekend, Ben played two concerts with the Maryland Symphony — work that he absolutely loves and is so thankful to be able to do.  He also experienced at least 9 seizures, if not more.

So life ebbs and flows.  After speaking with Ben and realizing how quickly his health had deteriorated, I was aware of how desperately I wanted to turn to food.  I didn’t.  First I tried to focus on work.  Then I tried to turn to God.  Finally, at night as I lay down to sleep, the tears came fast and quick and unbidden.  I didn’t want to weep.  But the release of tears frees me to pray more.

Another challenging issue facing me is that I need to make new arrangements for my children for after-school.  Ben needs to sleep in the afternoons, and I don’t like my kids coming home to an “empty” house.   One of my children is failing math because  Mom hasn’t been with him after school to supervise homework.  This is a bright child who is always responsible; but his lack of understanding has snowballed each week and he hasn’t wanted anyone to know how lost he is feeling in class so he hasn’t asked for help.  Now I need to find a tutor who can help get him back on grade level.

Ebb and flow.

How thankful I am for Hebrews 6:19, We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain.

Ebb and flow.  But not for our God.

Jesus Christ is the same yesterday and today and forever.

 

~Nancy