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Raw, Raging Reality

March 3, 2013 By 3 Comments

I have been asked several times of late how the Mom in Newtown, Connecticut found herself so isolated.  Did she deliberately disconnect?  Was she protecting her son? Did she not ask for help? Given that she is gone we will never know the answers to many of these questions.

But I have to acknowledge that sadly, I understand how she could become isolated.

I am a very social creature who seeks out and wants connection.  I reach out to friends, remember birthdays, send love notes, send notes of encouragement, etc.

I even ask for help when I feel we need it.

So how is it that despite asking there is little help that actually happens?

Honestly, I don’t get it.  It grieves me.  I don’t know what more I could do to make our family needs known.  What does it take to be heard? Truly heard?

Days turn into weeks. Weeks turn into months. Months turn into years.

People are busy.  They are engaged in their own lives and ministries.  They have their own priorities.  Good priorities.  Important priorities.  Priorities I would support also.

And in the words of an old friend who I will never forget, “We know that when push comes to shove, God will meet your needs.” This is true, of course.  But it is true of all of us.  God will meet our needs.  But He wants us to be in community.  He created us to be connected.

So this morning I awoke with an ache of loneliness.  Yes, even I, the one who founded this community for connection, feel lonely.  Why do you think I am so aware of the need for this ministry?

What am I called to do?  I am called to continue to share transparently, even when people don’t respond.  This is obedience to Christ.  It is tempting to stop sharing.  To crawl into a cave and pretend not to need others.  But that is not true.

And what do I do when I ask for help and it does not come?  How do I respond then?  I pour out my heart to God.  I weep.  I thank Him for His presence.  I remember Jesus experienced the most raw, raging, gaping loneliness man has ever experienced.  He went to the cross and became sin on my behalf.  And when He did, God turned His back on Him.

Unimaginable.  Unfathomable.  When all others fail I have the Father.  I can’t imagine Jesus’ suffering to not have Him either.

He is my sustaining grace when I am lonely.  When I long for someone to understand the daily journey.  When I long for someone to reach out to my son, I ask, I appeal, and it doesn’t happen.  My heart breaks.  My soul grieves.  How must I respond?  I must forgive even if they do not realize their need for forgiveness.  Because I need to forgive them.  If I don’t the enemy will use it to stir bitterness in my heart.  I refuse that outcome.  I reject it completely.

So today, if you are feeling lonely, disconnected, know I hear your heart.  I see you.  And more important, the Father sees you. He knows your life. He sees your loneliness. He can be trusted. Remember with me this sweet word from I Peter 4:19: “Therefore, those also who suffer according to the will of God shall entrust their souls to a faithful Creator in doing what is right.”

You are loved and prayed for today.

Shannon

Filed Under: community, Forgiveness, God's presence, grace, Uncategorized

The Fight for Peace

December 5, 2012 By Leave a Comment

“Peace be with you!” John 20:19

I recently found myself identifying with the apostle Peter in a new and deeper way while reading through the Gospels and his overestimation of his faith and trust in Jesus. I was reading Mark 14:27-31 where Jesus predicts Peter’s denial and Peter emphatically insists he would never disown Jesus but would die with Him. Peter wholeheartedly believed that no matter what he would stay faithful. As we know, within hours Jesus’ prediction comes true and Peter “broke down and wept” (verse 72).

I was reflecting on a similar personal disappointment in my own relationship with Jesus and my overestimation of my spiritual growth through a recent trial. I was sure that after experiencing the Lord’s provision in such clear and powerful ways for our family, I would no longer be anxious about our finances.

I was wrong and have spent the past two weeks battling anxiety and fighting for my peace.  Between racing thoughts, trips to the bathroom for my upset stomach and sleepless nights, He has heard my cries and met me in my emotional turmoil. He is helping me stay focused on Him alone and slowly I am regaining my emotional equilibrium.

I daily confess my deep need for Him in my life and surrender to Him fresh each morning. I admit that I had become complacent in our relationship for a couple of weeks leading up to this episode and it was enough to lose my footing. How quickly I turned to self-sufficiency and lost my way.

As always, there was no condemnation or shame for my humanness. I felt His forgiveness and deep love for me, his precious daughter. Our intimacy has been restored and we are moving forward, but this time in His strength and not my own. Anxious moments still come, but they are not as severe or long lasting. I recognize the significant progress I have made in this area and look forward to more freedom.

May we all experience the Prince of Peace in all His glory this season.

~Lynn

 

Filed Under: Anxiety, Emotions, Forgiveness, growth Tagged With: , ,

Pound of Flesh

June 7, 2012 By Leave a Comment

“NOAH! Jesse is touching your Nintendo!” Grace is sitting at breakfast, munching her toaster strudel. She is our meddler, our fire starter. She is very good at her job.

Noah comes tearing over from the couch, bent on annihilation. I try to stop him in his tracks – “Noah, NO! He barely touched it – he’s already put it back!” But I am too late. Noah flies past me to his brother with open hands; hands that grab his brother’s arms and squeeze and pinch in unison. Noah shakes with the effort. His teeth are gritted. He says nothing – only squeezes. This is almost worse than yelling alone, because I can subdue yelling quicker than physical violence. There is no need to tell you, of course, what this did to Jesse. He still bears the bruise.

Jesse receives M&M’s for using the potty. Noah is sure to ask for his own. Grace gets something from the treasure box for cleaning her room. Noah screams it’s unfair, that he needs something, too. If a friend is picked as classroom helper, Noah will make sure to inform his teacher of when it ought to be his turn. Anything he deems unjust warrants hitting or squeezing or pinching. He can go from quiet to raging in a blink.

Noah always gets his pound of flesh.

I’ve often thought how foolish these struggles are between my children: the fighting over a television channel, the screaming over the last honey bun, the terrorizing that accompanies a stolen toy. They don’t speak to each other afterwards. They slam doors and throttle each other.   I slide unwillingly into my role as referee multiple times a day. How easy it would be to compromise and be done with it!

Enter conviction, stage left. Funny how these miniature people magnify our own shortcomings.

“Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself. I am the LORD.” Leviticus 19:18

“Do not take revenge, my dear friends, but leave room for God’s wrath, for it is written: ‘It is mine to avenge; I will repay,’ says the Lord.” Romans 12:19

Sometimes God’s word requires a bit of interpretation. But you don’t need a Master’s of Divinity to figure out that the Lord is telling us to stop the fighting and let it go, already.

I’m prone to blue-face parenting just like everyone else. I repeat and cajole and sometimes it’s like screaming into a hurricane for all the good it does. Really, the only way for me to get this message through to my kids at this malleable stage in their lives is to model it first.

A very good friend of mine recently closed off certain areas of her life – and certain people – for no apparent reason. She took up with other friends, completely redirected her interests, and let other relationships (including ours) completely lapse. I was shattered. We had lived our lives side-by-side. We had traveled together. Our children were in the same class. But now she was suddenly shutting me out as easily as turning off a light. For weeks, I fumed and deliberated. I complained to Matt and my other friends. I grumbled constantly and carried a grudge that I’m certain seeped through my skin each time I saw her.

Finally, I gave up. I realized two things: (1) there’s no art, as Shakespeare said, to find the mind’s construction in the face. I didn’t know what was going on behind the scenes. She was searching for something. Maybe she just needed time to find it. (2) There is no injury so great that the Lord cannot repair it. Whatever she’s done to me is not mine to repay.

Lord, may my life be a paradigm of forgiveness and grace. May I learn to let things go and practice loving over grudge-holding.

And please, Lord. Let Jesse stop touching Noah’s Nintendo.

~ Sarah

Filed Under: Asperger, Challenge, Conflict, Emotions, Family, Forgiveness, growth, Relationships, siblings, Uncategorized Tagged With:

On Receiving

May 9, 2012 By Leave a Comment

Over the years, Ben and I have been the recipients of remarkable gifts, grace, and kindness.

It’s overwhelming.  It’s humbling.

In 2001, when my husband was still healthy and working as a professor and professional musician, he experienced a tremendous loss when his instrument was stolen while he was teaching at a local university.  Several weeks later, our Care Group graciously surprised us with an offering they had taken and presented us with a piggy-bank filled with cash in the amount for a new custom trombone.

Eight years later, after undergoing numerous trials and health issues, our Church Group recognized that I was going through Caregiver Burnout.  Wisely, they also noted that Ben was experiencing “patient burnout,” if there is such a thing, and they unexpectedly presented us with a large check to be used for a small vacation for the two of us.

Then, two years later, as Ben sat in the hospital with electrodes in his brain, our pastor presented us with a substantial check to help us with our medical bills.  (Embarassingly, stress from the hospital visit later proved too much; I lost the check and had to humbly ask our pastor to re-write the check after I couldn’t find the “special” place I used to store it).

We have been the recipients of countless meals, gift cards, rides, help from friends…so much help.  It’s humbling.  It’s praise-worthy.

Our previous neighbor spent the past five springs mowing our lawn while Ben was either hospitalized or laid up from seizures.  This past weekend, I came home from a business trip to Chicago to find our NEW neighbor mowing our weed-strewn lawn.

Our “celebrity pastor” sent us a large check with a simple handwritten note from him and his family after Ben’s last hospitalization.  I can only guess that we are not the first recipients of his kind, humble grace.

We are thankful.  We are humbled.

Our families have given us thousands of dollars in cash, countless hours of childcare and help for our other needs and wants.  They have paid for airplane tickets, household appliances, private school tuition, and so much more than words can still express.

As I write this blog post, it’s more than ten years since that initial cash gift was presented to us in a ceramic doggy piggy-bank.  We accepted that money in tears, never expecting how great our needs would become and how our thankfulness would grow.

We are thankful.  We are humbled.

It is never a pleasant place to be the recipients of grace.  I grew up expecting that I would be the GIVER…the one making meals, writing checks in secret, and providing service to the needy.

Today, I am the needy.

My friend brought dinner tonight.  Tomorrow Ben will send an email to our large group of friends asking for rides to physical therapy, doctors’ appointments, and other household errands.  Howard is retired, but he gives up every Tuesday morning to serve our family and give Ben rides anywhere he needs.  Friends and acquaintances have held my hand as I’ve wept tears of grief and anger in countless late night calls and teary-eyed visits.

We are thankful.  We are humbled.

THANK YOU to our village.  Thank you to Don; to Ron and Linda, Beth and Kipp, Dara and Michael, David and Elise, Howard and Arlene, Craig and Kristina, Kinneth and family, Shelley and Don, Pam and Steve, Kim and Wes, Diane and Rob, Laura and Steve, Glenna, Harriet, Silvia, and all of the people at Covenant Life School and church who have helped us along the way.

THANK YOU to our families who have sacrificed so much for us and are there for us every step of the way.

We are thankful.  We are humbled.

God sees.

Romans 8:28:  And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Or, as my family likes to say, “Everything always works out for the best!”:

 

 

 

Filed Under: Acquired Brain Injury, Church Response, Epilepsy, Extended family, Forgiveness, Friends, Gratitude, siblings

Please Stand With Me

January 1, 2012 By Leave a Comment

May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word. 2 Thessalonians 2:6-17

Perhaps, like me, you are still recovering from the Christmas celebration or barely hanging on this week while the kids are away from their normal routine.  Our celebrations and break have not been challenge free, but we did celebrate and we are getting through the week.

Just before Christmas, in the thick of all the preparations and stress, the children’s ministry director at our church posted the following message that brought me some much needed encouragement.  Please read the following out loud and multiple times if necessary. ;)

IMPORTANT PARENT INFO please read: “You are a good mom (/dad) my friends even if, like me, you’ve had a few bad moments … you are the exact mom (/dad) God knew your children needed. Let’s live in that truth today.”  (parenthesis my addition)

I am far from perfect, but I am the exact mom my children need, weaknesses and all.  I don’t have all the answers, but I do my best to stay connected and in the Presence of the One who does.  When I make mistakes, and I make lots of them, I ask for forgiveness and press on.  My kids don’t need a perfect mom and I don’t need perfect kids – what a great fit!  We seek to love and support each other the best we can and trust the Lord to cover the difference as only He can. (1 Peter 4:8)

I have been really blessed by the truth of this statement and I just had to share it with you, my sweet Chosen Families friends.

Please let God affirm you as the parent, spouse, sibling, etc. that your sweet one, wired differently, needs.  Please ask Him to seal this truth in your heart so when doubts come, you can stand on the Truth of God’s sovereignty and love for you and your family.

Standing on the Truth,

~Lynn

 

Filed Under: Christmas, Confession, Encouragement, Family, Forgiveness, General, God's presence, grace, Parenting Tagged With: , , , , , ,

Thanksgiving (A Conversation with Cami)

November 25, 2011 By 1 Comment

As I tuck my 11-year-old Treasure into her loft bed, she looks down at me with those huge hazel eyes and says,

“Mom, I have so much to be thankful for this week.”

The Holy Spirit whispers, “Pay attention now.”

I say, “Tell me what you’re thankful for.”

Cami says, “Well, since growing up isn’t bothering me right now because I’ve decided to not think about what might happen in the future and I’m only going to live in today,” deep breath, “I don’t really have any problems right now.”

I smile and say, “It feels really good to not have any problems, doesn’t it?”

Cami says, “The only problem I have is that sometimes other people–you know, kids–think I’m weird.”

It grieves my heart when she says this. “How do you know they think you’re weird?”

She calmly says, “The way they look at me sometimes.” A pause; then, “But that’s okay. Even I think I’m weird.”

I have committed to speaking truth over my daughter to try to counteract all the lies.  I open my mouth and let the Truth fly. “Sweetness, you aren’t weird. You are unique, and God made you exactly the way you are for His purposes, which include showing His glory through you.”

Cami says, “I know, Mom. They think I’m weird in a crazy way, but I think I’m weird in a good way.”

It’s quiet for a beat while I listen for the Holy Spirit’s prompt of what to say next, how to encourage her, how to build her up.

I’m surprised at what I speak next. “You know what? People think I’m weird, too.”

Cami says, “But in a good way,” and smiles.

I say, “I like you. A whole lot.”

Cami smiles her beautiful smile.

I’m grateful to be living life with this Treasure of a girl. How blessed I am.

Counting my many blessings,
Cassandra

Filed Under: Communication, Encouragement, Forgiveness, Friends, Gratitude, growth, Holidays, Hope, Journey, Parenting, Thanksgiving Tagged With: , ,

Love is a Battlefield

November 10, 2011 By 2 Comments

Into every family, a little sibling rivalry must fall. The days are hurly-burly, with much screaming, throwing, door slamming, hissing and wailing to accompany them. The children cannot be left to play on their own, nor even with each other. The acre backyard will not be big enough to control their skirmishing. Mealtimes, bath times, and bedtimes – when the children are necessarily gathered – become a thing to be dreaded.

Right? Well, imagine my distress when I discovered I was wrong.

On a trip to the beach with our dear friends and their own 3 children, I looked over Noah’s tear soaked face to plead to my friend Rhonda, “Why are your children so QUIET?!?” She offered a few answers: I’m a strict disciplinarian (check); I told them public places require inside voices (ditto); and on and on. I was heart-broken. I couldn’t keep my children under control. What was WRONG with me?

And then Noah had his first sleep-over. We decided to take Grace and Jesse out to dinner. It was the quietest meal with children we had ever had. At home, the two played sweetly on the floor with each other. They went down for bed with nary a complaint. What was different?  Noah, of course.

His nagging, his repetitive sounds, his theft of his sibling’s toys, the compulsive rubbing of his brother’s head, his inability to take turns; they were all missing. The patience of a four and two year old does not match that of their parents, and we realized that when he taxes US to our limits, his brother and sister are already past the point of insanity.

“Gracie, say hmmm. Gracie, say hmmm. Gracie, say hmmm.” “STOP IT, NOAH!!!”

This is our ride to school.

“Jesse, give me the train! Bad Jesse, Bad Jesse, Bad Jesse!” “NOOOOO NOAH!”

This is post-school playtime.

These are not gentle power struggles. These are shrill battles of will with physical aggression involved. I could go on, but I’m already eyeing the Ativan on the counter.

A sub-diagnosis of Noah’s is oppositional defiance disorder. Hard to believe, considering that Noah’s heart longs for approval and acceptance. His soul is tender and compassionate. This dichotomy is a part of who these children are: while they recognize that we are created for community, Aspergian kids cannot crack the entry code. Sometimes, fighting is the only way they know to make a connection.

Autism expert Dr. Jed Baker is quick to point out that 90% of teaching and parenting these kids is tolerance (just when I thought I’d already bit a big enough hole in my tongue….). “Make every effort to live in peace with everyone” (Hebrews 12:14). Peace is a rare visitor in our home, but the responsibility to model it lies with Matt and me. It starts with our own willingness to compromise, wait, understand, and apologize. A certain gentleman learned this lesson the hard way when I told him to go back and apologize for something he said to a stranger a few days ago. I won’t elaborate, but Matt, you know who you are.

Every one of our days involves an altercation. We guide Noah in the best direction we can, avoiding triggers (biological, sensory, or fear-based), creating a reward system for when he makes the correct choice, and most importantly, asserting the value of an apology – something that doesn’t come naturally to an Aspie.

Sometimes though. when we are very lucky, that apology does not have to be extracted but comes of its own accord. Like today, when Noah attacked his little brother for taking a LEGO off Noah’s shelf. After separating the two, I discovered this note at the entrance to Jesse’s nursery:

If you can’t speak Noah, it reads: “Jesse, I sorry. Here you go, good boy.”

- Sarah

Filed Under: Asperger, Autism, Challenge, Conflict, Emotions, Forgiveness, Parenting, Relationships, siblings Tagged With: , , , , , , ,

Oh No You Didn’t

October 27, 2011 By 3 Comments

The wind’s seeping and moaning through the cracks in our poorly insulated bedroom windows today as I sit at my computer, gnawing a knuckle. I’m getting myself all worked up again. I’m prone to these little mini-paroxysms, you see. By nature, I’m a pacifist, a mercy-giver and a chicken, so when the time is right to be angry, I don’t say anything. When the time is past however, I’m a veritable colossus of articulate and righteous indignation. I’m really good at getting mad AFTER the fact.

I can’t think of a single instance when my rebuttal was timely delivered, save for that one time when my staunchly left-leaning atheist of a boss – the one who preached equality and social reform – called me a “fascist” for going to a Christian college, whereupon I managed to retort, “Oh wait. Aren’t YOU the one who’s supposed to be open-minded?”

You can high five me later.

But now, I’m angry thinking of all the self-righteous comments and looks my Noah’s received. To be fair, our burden is in some ways lighter than most. As a boy with high functioning autism, Noah may seem just a little “odd.” That he flaps, or chews his clothing or talks your ear off about Super Mario Brothers. His verbal ability and his self-sufficiency often belie his disability.

From another vantage, this actually makes our burden heavier than most. Because you’d never notice his difference from a distance, you might look down your nose when, in the middle of his flag football game, he halts a play to have a complete and total meltdown in the middle of the field. Or, you might snort a little out of disgust when you’re standing behind him in the checkout line and he remarks in full voice that the woman in front of him “sure is fat!” Remember that scene from “Terms of Endearment” when Emma doesn’t have enough to pay for her groceries? Yeah. It’s EXACTLY that painful.

You know what else bugs me? “There’s nothing wrong with him.” Why? Because you can’t see a missing limb? Because he’s not in a wheelchair? My choice responses? (1) “Nothing wrong with him? That’s because we pay a lot of therapists a lot of money to make sure he doesn’t gag at dinner because there’s a candle on the table”; (2) “Nothing wrong with him? Good. Then I’ll send him to your house the next time he has a meltdown. And while you’re at it, do you mind teaching him to use a belt?” Or, my favorite, (3) “Nothing wrong with him? Well, duh! He’s perfect the way God made him!”

I know Jesus experienced anger (Matthew 21:11-13). I know He was enraged that the temple was being used to buy and sell – making a holy place nothing more than a common street bazaar. But before I silently fist pump my own angry, internal tirades, I have to remember that Christ said, “It is written…my house will be called a house of prayer.” In other words, “you should have known better, guys. You had the book!”

When I get the supercilious looks and the incredulous comments, I need to take a breath and remind myself that they can’t SEE what Noah has, and they don’t KNOW its manifestations. They are ignorant – not just in the Maury-Povich-chair-flipping- “Oh no you didn’t!” sense of the word, but they literally “know no better.” They can’t “see” his Asperger’s like I can.

That means, much as I would like to verbally eviscerate them, I need to practice the mercy I like to preach, keep my trap shut and smile. After all, God loves them just as much as He loves Noah and me.

If you’re reading this and you’ve experienced that familiar prick of rage, here’s my knowing glance from across the cyber-distance, telling you that I’ve been there, too. We just have to forgive these poor blokes for their ignorance, because they just don’t know.

Not yet.

- Sarah

Filed Under: Asperger, Autism, Confession, Conflict, Forgiveness, grace, Parenting Tagged With: , , , , ,