A Peek Behind The Curtain

Living with Michael’s Asperger’s is like living with someone who always stays behind a curtain.  You know they’re back there, and if you get really creative you can kind of communicate or see the curtain banging around, and it sort of suffices for getting the every day job done, but you still live in two different worlds.  When you try to talk to Michael, you never know what random fact is going to shoot out at you, and it’s usually in the form of a movie quote.  For the a while, he had echolalia, and I would struggle with basic mommy things.  Did he say “I love you” because I did or because he actually meant it?

Every now and then, his brain and body calm, and I’m able to push the curtain aside, however briefly, and catch a glimpse of the kid that’s back there.  He’s a beautiful child.  He’s smart, I’m pretty sure he’s funny, and he’s very loving and generous.  He’s great at memorizing songs and Scripture verses, and he’s been fascinated with Jesus and Bible stories since he could talk.  Sure, he has his four-year-old moments like every other child, but when the limbs stop flailing and the mouth stops verbally dumping out all the contents of his head, I can see God is taking our feeble parenting attempts and turning them into something amazing.

Yesterday, we were all packed in the car, on our way out for another fabulous shopping trip.  These guys are a three-ring circus show like no other, let me tell you.  Whenever we get in the car, I say a prayer.  It’s the same one every time, short and easy for them to understand.  I usually pray it, and at the end, they both like to repeat “Amen” after me (or “MEMAN!!” in Gabriel’s case).

When I finished the prayer yesterday, there was no chorus of “Amens” from the back seat.  Michael was quiet, but after a moment, he very calmly said, “Thank you for praying, Mommy.”

::insert really huge happy dance here::

That’s no movie quote!!!  Maybe he picked it up in Sunday School, maybe it was an actual original thought.  I’ll never know.  Sometimes I struggle with the fact that I don’t get to regularly measure how much spirituality I’m teaching my kids.  They don’t often indicate to me what they absorb.  But every now and then, God gives me awesome moments like these to assure me He’s keeping their hearts close to His.  I hope I’ll get to watch Michael accept the Gospel one day.  It’s still a really abstract concept for him to grasp, but until then, I’m so grateful that the Lord is covering that gap for me.

Here’s my motley crew, back from shopping yesterday.  And yes, I bribe them with cookies.  We all do what we gotta do!

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I've Gotta Get Rid of These Rocks

Living with guilt is like walking around all day with a big bag of rocks on your back.  And seriously, who needs that?  Yet, for the longest time, I’ve been strapping on that one unnecessary burden day after day.

It’s so easy for me to compare myself to other people.  That’s not a bad thing, right?  How else are we going to know how we’re doing in life?  But the kind of comparing I have been doing is downright unhealthy.  It’s been leading to jealousy and guilt, and those are heavy bags to be hauling.  It’s not like I don’t have enough stuff to worry about.

I found myself apologizing all the time, to the point where I think I was starting to annoy even myself.  I sat down to think what that was all about, and I realized I felt so inferior.  I think of myself as a lousy wife, a lousy mom, a lousy Christian, and even a lousy person.  Everyone I know out there is doing it better than me, right?  I’ve believed that those tiny glimpses I get into other people’s lives tell the whole story, and that couldn’t be further from the truth.  I’ve been letting the Devil whisper into my ear during moments of weakness, and I’ve believed all these lies for far too long.

We just started a new book in our moms’ support group called The Circle Maker.  It’s a study on prayer, and in it Mark Batterson says vague prayers get vague answers and specific prayers get specific answers.  I’ve been scared of specific prayers because what if they don’t get answered?  What if what I’m praying for is not God’s will?  But in this case, I’ve found a really specific prayer I’m going to start praying for myself.

I really want to be free of all this guilt.

It’s gotta go.  When I get those moments of total joy and love welling up in me as I watch my kids, I experience a tiny glimpse of how God sees me, and guilt and an inferiority complex do not fit into that picture anywhere.  I can pray for that with boldness, because this is something I know without a shadow of a doubt is God’s will for my life, to experience the freedom that only comes through Christ.

I don’t know how long this is going to take, old habits die hard and all that.  But God has given me two promises already, and I plan to hang on to those.

Romans 8:1-2 “Therefore, there is now no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit who gives life has set you free from the law of sin and death.”

In Luke 4, Jesus announced the whole purpose of His ministry by quoting a passage from Isaiah.

“The Spirit of the Lord is upon Me,
Because He has anointed Me
To preach the gospel to the poor;
He has sent Me to heal the brokenhearted,
To proclaim liberty to the captives
And recovery of sight to the blind,
To set at liberty those who are oppressed;
To proclaim the acceptable year of the Lord.”

Jesus talks about freedom a lot.  I think it’s time to let His truth set me free.

 

Acts of Grace

The last year has been a pretty tough one.  A few months ago I was finally able to put the word “depression” on what I felt.  I was having a hard time adjusting to three kids, and Gabriel’s needs and therapies had really ramped up in the months leading to William’s birth.  When Michael started homeschooling with a full time therapy schedule in the fall, I completely burned out.  I was so tired of spending entire days on the verge of tears or staring blankly at a wall.  A visit to the doctor confirmed my hormones were all over the stratosphere and making a rough time a whole lot darker.  It was getting hard to even take care of basic needs for my family, and I had to ask for help.

I was so blessed with what followed.  I seriously have the world’s best support system.  There is no way I could go through what I do without the network God has given me.  I have an amazing husband who runs an emotional buffer for me when he gets home in the evenings.  I have parents who babysit on a moment’s notice when Nate and I are starting to lose it and need to run out of the house.  I have literally the best in-laws in the whole entire world who learn everything the therapists teach and are totally involved with their grandchildren.  I have a church that embraces special needs kids, and women in my support group who will let me call them and pray any time I need it.  I have friends who still invite me to their houses, despite how much my kids’ struggle outside of their home environment.

This whole group kicked into action.  It was amazing.  People prayed for me, offered me help and babysitting.  No one minded that I slacked on extra duties.  A beautiful mom of a girl with Down’s Syndrome came to my house with hot food, let me cry, told me I was normal, and washed my dishes.  My mother-in-law sacrificed hours of time I knew she really didn’t have to help me get back on my feet with housework.  My dad started driving Michael to therapy, and my husband didn’t complain once that dinner was never ready when he got home.  I was so overwhelmed at how God provided when I really needed it, and boy, did I feel the love!

It’s been coming more and more often in little ways.  Strangers are gracious when we are out in public.  They don’t mind when my kids walk up to them and babble incoherently.  They smile and talk back.  They don’t stare when the boys start shrieking or acting bizarrely.  Cashiers are friendly and understanding when my kids struggle with boundaries in check out lines.  I didn’t get dirty looks when one of them peed on the floor in the middle of the craft store or broke down at church and flipped chairs for a half an hour.  One beautiful supermarket manager even distracted my kids once with little bottles of bubbles when a wrestling match broke out in a shopping cart that proved to be pretty deafening. 

I’m finding grace in so many places, and I just have to say thank you.  Thank you to my family, friends, and church who didn’t let me disappear through the cracks when I felt like I was sinking.  Thank you to all you strangers who give me random acts of kindness.  Thank you for holding doors open for me or helping me with a shopping cart when you see me juggling my rowdy crew.  I have no words; it means so much.  Thank you for giving me kindness when I probably wouldn’t have made it without.  I had prayed several months ago that God would really show me how much He loved me.  Life started to get awful soon after that prayer, but that’s when the grace and acts of love appeared. 

I’m getting help for my hormones, and I’m starting to have more good days than bad.  But I’m also grateful for the hard times because I have been able to see just how blessed I truly am.  It’s going to be a long road, but God has answered my prayers and poured on the love.  I only hope I can show how grateful I am one day and pay it forward.

This Is Necessary

A couple of weeks ago, our town had a community day.  I was pretty excited because all the attractions were pre-paid and our kids could enjoy them for free (this really helped our budget 🙂 ).  I was looking forward to it for a long time and had my hopes set up for a great, NORMAL, family day.  That’s all I wanted.

We did fine up until the end.  The kids just couldn’t handle the transition, and as usual, we were high-tailing it out of a public place like criminals on the run.  It just broke my heart.  But one of the boys still couldn’t break out of his cycle the whole way home, and the worse he got, the more I cried.

You’d think I’d know better by now not to get my hopes up, but I can’t help it.  I keep longing for happy, peaceful, normal family experiences.  I think I’m basing my expectations on something that isn’t real though.  I have this image in my head of what I think others around me have.  I know it’s not always true, but I always seem to fall prey to the sin of comparison.  It’s something I have to work on.  I don’t know what my family picture is supposed to look like, but it’s certainly not going to be anything typical (or even peaceful!) any time soon.

That night I was really down, and I couldn’t break out of it.  I was starting to whine at God (I’ve learned a long time ago He’s OK with me being in a mood, He can handle it) about why I just couldn’t have what I wanted when He whispered something to me.

“This is necessary.”

It’s amazing how He knows just what I need to hear.  I didn’t need a perfect day, what I needed to learn was that He’s working on me, my kids, our family.  He’s trying to shape us for a future purpose for His glory.  And while the day ended on an absolutely awful note, it was completely redeemed by the fact that He reminded me that none of the pain is wasted.  It’s a forming process, not a fun one, but something I should definitely go along with if I want Him to use me.

I was reminded of this lesson again at 4:30 this morning when the baby wouldn’t sleep.  I don’t like this season very much, but it’s necessary, and I’d rather come out better for it than waste all the hardship and have it be worthless.

Ephesians 4:20-24 “That, however, is not the way of life you learned when you heard about Christ and were taught in him in accordance with the truth that is in Jesus.  You were taught, with regard to your former way of life, to put off your old self, which is being corrupted by its deceitful desires; to be made new in the attitude of your minds; and to put on the new self, created to be like God in true righteousness and holiness.”

Just What I Needed

When Michael was about 18 months old, I prayed that God would tell me just a little bit about his future.  I didn’t need to know the whole thing, but as a parent, I wanted to know just enough that I could make sure I was encouraging my child in the way he should go and not squashing anything God intended for him.

It was the only vision I’ve ever seen.  Just a second or two, but I saw Michael as an adult, fulfilling God’s purpose for his life, and it was beautiful.

A few weeks later, the diagnoses started coming in.  Speech delay, apraxia, OCD, PANDAS, and finally autism.  It was a whole new world that could have completely destroyed all my hope, and let me tell you, I had my moments.  Up until then, these words had a deathly permanence to them that was scary.  There were so many times I wallowed in fear with thoughts of caring for a handicapped adult in my old age, that my child wouldn’t have much of a future and that I didn’t have any.

I prayed a lot for Michael’s healing (and I still do).  I prayed that God would lay a hand on him and completely heal him and give me a normal child.  But God knew what I needed, and instead of giving me instant healing, He gave me a picture of what my son could be one day.  And that gave me permission to fight.  To fight disorders that are supposed to be life-long, to fight to keep my hope, to fight and stand in faith and believe the promise that God gave me.

I don’t know if the vision that God gave me is going to come true exactly as I saw it, but that doesn’t matter.  God knew what He was doing and gave me my job to do.  I’m trying to do my part and not worry about His.  Romans 4:17 says “…even God, who gives life to the dead and calls those things which do not exist as though they did”.  I believe God has the power to call things into existence, even a future for a kid full of syndromes.

It got me thinking, what else in my life is God trying to call into existence?  What else is He trying to breathe life into?  Is there something it’s not time to give up on yet even though it appears dead?

Michael’s getting better.  He’s not the withdrawn, OCD kid that couldn’t speak and would lay on the floor screaming and bashing his head on the furniture till he was bloody and bruised.  God is definitely healing him, slowly and methodically, in ways that are accomplishing so much more than I would have expected and that are giving God all the glory.

Romans 4:20-22 “He did not waver at the promise of God through unbelief, but was strengthened in faith giving glory to God, and being fully convinced that what He had promised He was also able to perform.  And therefore ‘it was accounted to him for righteousness.'”

May it be so in my life too.

Beginning In The Middle

It would be nice to start a story at the beginning, except I’m not sure where mine is.  What I can tell is that I’m a Christian, a wife to an amazing man, and a mom to three incredible little boys.  Right now, trying to raise God-fearing patriots occupies a majority of my time.  I think parenting in general is hard and full of trials and tribulations.  We do seem to have a few extra obstacles in our course, however.

We had three boys in four and a half years: Michael, Gabriel, and William.  Michael is almost 5 years old and has Asperger’s Syndrome.  Gabriel is 2 and a half and has developmental delays due to being born with scar tissue in his brain.  Both Michael and Gabriel have tactile sensory issues that make life really interesting.  William is only 7 months old and seems to be healthy and on target so far, but then again, so did the first two till they were about 18 months old.

Like all other parents, I’ve done my fair share of crying and celebrating.  There are a lot of bittersweet moments that come with parenting special needs children.  No matter how great or terrible things get, I’ve held on to two truths that have sustained me this far:

1 – God is good.

2 – He’s working on His plan, even though I don’t know what it is.

And there we are.  We’ve started in the middle of the story.