Tuesday, March 30, 2010

He Knows!

"He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not." (Isaiah 53:3, NIV)

I was recently given the honor of participating in a "virtual book tour" for a newly released book entitled Autism & Alleluias by Kathleen Deyer Bolduc. Participants were mailed the volume, asked to read it, then give a review on their blog between the dates of April 1-7, 2010. I was very much looking forward to getting the book given the prevalence of autism in our world and my desire to see more quality literature written on faith and special needs.

However, when I received the book, with all its scripture quotes, raw emotion and prayers, I found myself in a place I didn't expect. I found myself in a place of constant contemplation of how our suffering as parents of children with special needs puts us in a unique place of connection with our faithful God. I connected with so many of the emotions in the book and knew that I serve a Savior who can identify with those emotions.

When our precious Charlie was born and immediately diagnosed with severe hemophilia, I found myself in a place of deep grieving and anguish. Watching that little newborn have to endure several infusions before he had even completed his first week of life ripped my heart out. My sorrow was so profound - just knowing that this was our new life now - that I had to share it with others because it was too huge to contain in my human heart. Yet, people couldn't hear it. The thought of this little baby suffering was more than they could stand. We were cut off in mid-sentence. The subject was quickly changed after the obligatory, "How are you doing" was asked.

I can remember being at a Memorial Day Parade with this baby who was barely a month old and having a man repeatedly commenting on the large hematoma or bruise on Charlie's little bicep. The shame and condemnation thinly veiled in this man's words pierced me through. It only added to the dismay I had felt myself when I went to change this infant's clothes and found this injury that had occurred for no apparent reason.

This wouldn't be the first time I received false accusation from ignorant people. When we moved into our new house in 2001, we had a new refrigerator delivered. Since it was warm out, Charlie was padding around in nothing more than a diaper. The delivery man took one look at the angry bruise on Charlie's chest, looked at me, then shook his head in disgust. My heart is still wounded as I recall it.

Through the years, I have experienced all the heartache of seeing my son suffer unspeakable things. I've experienced rejection by friends because our lives are too messy, too stressful. I've endured refusal by teens to babysit for my son because they have false notions of what it might be like or what he is like. I've seen his sorrow as he's excluded from using a trampoline or playing football because they would put his health at too great a risk. I've heard my son cry out in utter anguish, "Mom, make them stop! You're supposed to help me!"

Bolduc points to emotions and experiences like this in her book too, and therein lays the common thread. We parents share the very heartache that God the Father experienced in watching His Son despised, misunderstood, looked at in disgust, persecuted, suffering and crying out for rescue. And our children share the pressure and testing of God the Son by going through much the same. Romans 8:17 tells us "We will also share in the glory of Christ, because we have suffered with him." (CEV) Hebrews 4:15 says of Jesus, "This High Priest of ours understands our weaknesses, for he faced all of the same testings we do, yet he did not sin." (NLT) Psalm 34:18 assures, "The Lord is close to the brokenhearted and saves those who are crushed in spirit." (NIV) Again and again, we see how close we are to our God in the midst of our special needs journey. As we contemplate our suffering Savior, we can see how He turns our painful difficulties into something glorious because they further identify us with Him!

One story in Autism & Alleluias struck a particular cord with me. It was the story "We Need Jesus!" In it, Bolduc shares the experience of dissolving into tears of frustration while trying to manage caring for her son. Who of us hasn't experienced that? But she's tenderly met by the Savior through her son who sits down next to her, patting her shoulder proclaiming, "We need Jesus. We need Jesus."

As one Person of the Trinity, God wrapped in flesh, who so strongly identifies with all we and our children endure, Jesus holds out the tender hope of empathy towards us. Why wouldn't we hold up the broken pieces of our lives to Him and proclaim what Joel Bolduc did? Whether parent or child, in our times of being "despised... rejected... familiar with suffering" when we confess "We need Jesus," we are united to the Ruler of the Universe, Lover of our souls in a precious and unique way. Our journey is His journey.

*For a further review of Autism & Alleluias, see the article "Stories from the Summit" in our April, 2010 issue of SNAP SHOTS. Autism & Alleluias can be purchased at Amazon.com.

Thursday, March 25, 2010

All Eyes Are On YOU!

But don't just listen to God's word. You must do what it says. Otherwise, you are only fooling yourselves. (James 1:22, NLT)

Yesterday I had a rather humbling and eye-opening experience on the internet. A blog posting by a Christian homeschooling mom of 6 went viral with a number of mothers I connect to via social networking. They were enraged as this woman told the tale of a 4 year old's behavior in a library she was visiting with her children. The blogger was highly critical of the child and her grandmother, describing behavior which several of the readers identified as sounding like autism spectrum disorder. As readers posted comments bringing this possibility to the blogger's attention, she continued to insist that this child should have been better behaved regardless of diagnosis. When there were subsequent responses trying to explain how autism and its therapies work, things further escalated with the blogger lashing out at readers. Sadly, this is the same blogger who had just described herself as sitting in a library reading through her Bible.

Ironically, this all occurred on the same day that I had posted James 1:22 on a couple of my social networking venues. Not only does that verse convict me through and through, it shares my righteous indignation towards people who are all talk and no action when it comes to their claims of belief.

This brought me back to a time when my pastor, Dr. Terry Fulks, reminded us, "Whether you know it or not, people are watching you!" So many of us miss the high calling of professing ourselves as Christians. Each and every thing we do when we take on that name reflects upon The One we represent here on earth. When I lose my temper, it reflects poorly upon God. When I lack compassion, mercy, or understanding, I make God look bad. Why would anyone want to become a Christian when they see only harsh judgement, a critical spirit, self-righteousness and pride? In the debate on this contentious posting, one mom even shot me the quote by Ghandi, "I like your Christ. I do not like your Christians. They are so unlike your Christ." Ouch! That should make ANY of us more vigilant about how we act towards others!

Let me give it to you straight - Here's what Jesus espoused and still calls us to:
  • Love

  • Empathy

  • Helping one another

  • Mercy

  • Kindness

  • Humility

  • Patience

  • Joy

And these are just a few!

Being a leader in disability ministry, I regret to say that I still find "the church" to be difficult to work with when it comes to special needs families. Congregations can be too much like a club rather than a tender home for those who are weary and struggling. Both leaders and attendees can lose sight of Christ when they demand flawless, predictable services that exclude the disabled. Christians shame themselves when they refuse to do the dirty work of loving those that society considers unlovable or oppressed.

With the same token, I've seen plenty of families of kids with special needs clutch their bitterness like a tattered, rancid blankie. They self-righteously scoff at people who reject them claiming an unearned moral superiority. How easily families like us can forget that people need to be taught what it's like to live with a disability in the household. Before we became parents of kids with special needs, we too possessed an ignorant fear. Regardless, ALL are called to show mercy, love, forgiveness and patience to others.

My point is that we all need to go beyond merely listening to the word, claiming belief. Even Satan does that! We need to put it into practice DAILY. What that looks like changes minute by minute, especially when living with medical crises or unpredictable children. Starting each day with a prayer to look more like Jesus and less like ourselves will invite the Spirit in to do His perfect work on our hearts and thus, our behavior. No doubt, in our ugly humanity, we'll still slip up, but with far less frequency. And when we do falter, our humility and repentance will heal the wounds we inflict. That's a project big enough to keep each of us busy all they way to Eternity!

Monday, March 22, 2010

Right Here! Right Now!

As God's partners, we beg you not to accept this marvelous gift of God's kindness and then ignore it. For God says, "At just the right time, I heard you. On the day of salvation, I helped you." Indeed, the "right time" is now. Today is the day of salvation. (2 Corinthians 6:1-2, NLT)

Okay, I'm SURE you've NEVER done anything this dumb! But I've been known before to acquire a really cool item and forget I even have it. Being a bibliophile, I've seen a book I knew I just had to read, but I wasn't quite finished with the one I was currently reading. So the new volume goes on the shelf, collecting dust, hoping to be read some day in the future.

The same thing has been known to take place with clothing. Not until I began watching a popular cable television show that transforms people's wardrobes did I realize that the nice pair of slacks I had saved away for my next dress-casual occasion could be worn as everyday wear. I don't have to walk around looking like a frumpy, dumpy slouch when I have the nice attire in my closet!

If this is so obviously idiotic in our material world, then why don't we see it the same way in our spiritual life? How often do we leave the joy of our Christian salvation collecting dust on the shelf or stashed away in the closet?

Many a time I have walked glumly through my days, living only for the hope of Heaven. Now, that eternal expectation is not in itself a bad thing. But the amazing salvation of Jesus starts right here and right now! That means our joy and hope doesn't have to wait for the end of our earthly life to begin. Wow! We should be excited about that!

Get into God's word and you will see that when we accept Jesus as our Savior and Ruler, we receive EVERYTHING we need by the power of the Holy Spirit. (2 Peter 1:3) That means that we have the gift of more wisdom and clarity in our decisions. Our eyes are suddenly opened to the blessings surrounding us that we would have otherwise missed. We have available a peace that can soothe us in spite of our circumstances. And we gain a strength that is not our own. These are only a few of the many benefits we are lavished with when we commit our lives to the Lord.

Our salvation, our Heaven begins here and now when we surrender fully to Jesus! That makes our faith something even more compelling to share with others! And without recognizing the immediate benefits to our redemption in addition to the eternal promise, our free gift provided by God's Only Son is like a huge diamond collecting dust, waiting for "some day" when it could be worn today.

Friday, March 19, 2010

When the Rubber Meets the Road

"With all your heart you must trust the LORD and not your own judgment. Always let him lead you, and he will clear the road for you to follow. Don't ever think that you are wise enough, but respect the LORD and stay away from evil." (Proverbs 3:5-7, CEV)

I've got my undies in a bundle over a national issue affecting my son's well-being these days. I find myself with my stomach in knots, tense, irritable, losing sleep. I've even shed tears over this issue.

Meanwhile, my neighbor's dog has left copious piles of poop in our yard over the winter months. Joy! I know what my nasty little self wants to do with those piles of poop, especially since the same neighbor falsely accused one of my kids of trimming their bushes. (Ever hear of rabbits, buddy?!)

And as if that's not enough, there's a kid at school who won't relent in pushing my son emotionally over the edge. We've had to make numerous adjustments just to keep our son attending school. And while I know this little antagonist has issues of his own, my sinful spirit wants to give him and his parents a piece of my mind!

Think I'm "spider-webbing", all over the place with my thoughts? I'll bet YOU'VE had days like these. And THIS is where the rubber meets the road! We can read scripture, memorize verses, throw platitudes at others, but our true faith is what shines through at these most trying of times.

Trusting in the Lord is what keeps me from totally losing hope because of what is happening in Washington, DC. Trusting in the Lord is what keeps me from leaving a fecal package with a cranky letter to keep your mutt on your own side of the property line at my neighbor's doorstep. Trusting in the Lord is what keeps me from losing my cool with little Mr. Antagonist and his parents.

We can think we're so clever and justified in taking things into our own hands. But is that how our Human Example lived out His life? Did He espouse the saying, "Don't get mad - Get Even!"? Did He let Himself be paralyzed by worry and fear? No, He didn't do any of these things, thus, neither should we.

We can't do it of our own power! Humanly, I have ZERO self-control! But by the power of the Holy Spirit in me, I can reflect God's glory in the ugliest of situations. (Phil 4:13) Immersing ourselves daily in His word and prayer, are what keep us on the short-leash, enabling us to maneuver through life with His perfect guidance. I know without that, I'm off on my own, letting my ugly side hang out and forfeiting God's best for me.

Trust in your Maker! He loves you outrageously! He has your best in mind! And His way IS perfect!!!

Tuesday, March 16, 2010

The Translator

"But when he, the Spirit of truth, comes, he will guide you into all truth. He will not speak on his own; he will speak only what he hears, and he will tell you what is yet to come. He will bring glory to me by taking from what is mine and making it known to you. All that belongs to the Father is mine. That is why I said the Spirit will take from what is mine and make it known to you." (Jesus speaking to his disciples; John 16:13-15, NIV)

Do you remember when you child was first diagnosed? Whether it was at birth or further into their life, you were immersed into a whole new culture and had to learn a whole new language. For us, medical professionals had to explain the clotting cascade that forms a blood clot in the average person. New words like hematoma, venipuncture, Factor VIII and prophylaxis suddenly became part of our every day conversations. Fortunately, we had other parents who'd gone before us to take us under their wing and translate this whole foreign dialogue to us. When we went to conventions or "family retreats" to learn more about managing our son's diagnosis, they were there to help us when we were confused. Without them, we would have no idea why it was important to keep track of how much each unit of clotting factor cost. We wouldn't have understood that we could assert ourselves when deciding to skip having a port placed and instead, opt for peripheral infusions.

It has more than likely been the same for you. Learning new diagnoses, therapies and medications requires others to initially translate for us, so we can understand and make good decisions. Things like IEPs, SPD, RAD, FAS and AIT become commonplace after someone interprets it for us.

This experience uniquely fits us for God's kingdom because growing as a believer follows this exact same path. How many of us have thought, I don't understand the Bible. I've tried reading it before, and I just don't get it. What is God's will for me? Is He punishing me? What does grace mean anyway? I think I'll get to Heaven because I'm a good person. I've never killed anyone or anything like that. You have to be good and do good to get to Heaven, don't you?

Now, lest I sound overly simplistic, no one can fully know the mind of God. However, our Father is so loving, kind, merciful and generous that He has provided us with a Translator. Just as we have other parents and medical professionals to help us interpret the confusing information we encounter at diagnosis, so the Almighty provides us with His Holy Spirit to clarify things for us as we attempt to live out the Christian life. As we read His word daily and pray for His guidance, He sends The Interpreter to translate His will and His ways to us. He reveals things we previously neither understood nor realized when we weren't walking in a relationship with Him. This makes His word and fellowship with Him dynamic and always growing. We begin to understand who God is and how He operates, yet, He never becomes dull or boring.

In the NCV translation of Psalm 25:14 it says, "The Lord tells his secrets to those who respect him; he tells them about his agreement." That blows me away! The Creator of the entire Universe, the highest mountain, the smallest cell, sees fit to confide in me! And so it goes with God. The more He reveals Himself through the person of The Translator, the more we are left in awe of Him!

When we need direction, discernment on making those important decisions for our children and our families, He is faithful to give it to us. All He wants is for us to seek Him out. He's loving, willing and ready to point us in the right direction.

Friday, March 5, 2010

Joy In The Ordinary

"And so, he will make you happy and give you something to smile about." (Job 8:21, CEV)

It was like any other ordinary Wednesday night. We rushed to get the family fed, then I sped off to deliver my 13 year old to youth group. But when I arrived with my cargo at the church, it seemed anything but ordinary!

A friend I haven't seen in over a month was just ahead of me dropping her son off. I beeped my horn. She caught sight of me, leapt out of her vehicle, threw open my driver's door and begged for a hug. So here's the two of us with our cars oddly stopped, engines running, laughing & hugging in the parking lot of the church entrance. We were there in such a way that we were obstructing other vehicles. Suddenly, we get flashed by the headlights of our laughing girlfriend with a line of cars behind her. It was a simple moment, delightfully hilarious, and much-needed.

You see, we had been going through some terrible trauma with more than one of our kids at the time, and our days were anything but ordinary. There was nothing that felt like "normal" in our situation. The chaos was overwhelming. Routine was a foreign concept. I would've given anything to have just another average day!

Well, in the heart of our trials and crises, our faithful, loving God can and does slip in some of the simple things in life to show us His tenderness. For me, it came that night in a silly session of "Chinese fire drill" with a couple of girlfriends I hadn't seen in awhile. But it has also come in a soothing sip of freshly brewed coffee, the soft fur of a purring cat on my lap, or gazing at a simple piece of art that always dwells in my home. There comes a sudden deep breath, a refreshment from just experiencing that every day item that pleasantly grounds us. We experience a bit of stability in the midst of utter insanity. And there is no doubt that it comes from a Creator who cares! (James 1:17)

If today you're feeling heavy, give yourself a little break to take time and smell the roses. The beauty of a crystal clear blue sky or the humor of a silly inside joke could be just what you need to turn your eyes off your troubles and onto life's joys. When we experience those joys, gratitude follows much more naturally. And it's hard to stay down when your heart is filled to the brim with thankfulness and joy.

Tuesday, March 2, 2010

A Friend To The End!

"A friend loves you all the time, and a brother helps in time of trouble." (Proverbs 17:17, NCV)

"Some friends don't help, but a true friend is closer than your own family." (Proverbs 18:24, CEV)

"Make new friends, but keep the old. One is silver,the other is gold." So went the song that my mother, the Girl Scout leader, taught 5 of her girls when we were young. We hardly had an idea at that age what this song even meant, rather enjoying its lilt as we shared each other's company. It all sounded and seemed so simple back then.

Fast forward to adulthood and friendship looks like something far more complicated! Having a child with a challenging diagnosis ends up being the true test of a friendship. A person sadly discovers how many acquaintances rather than true friends they have. People my husband and I thought were part of our closest circle suddenly distanced themselves or quickly changed the subject when it came to our baby's disorder. Even family members that practitioners expected to be helping us along our journey were suspiciously absent in our sorrows.

While it's still heartbreaking to reflect upon that time, it's also amazing to see how God filled the void in our lives. People who seemed to be only peripheral in our circle of friends suddenly drew closer and were there for us. Complete strangers brought meals and shared anonymous financial support. And new, wonderful, lasting friendships sprang up. God formed new community for us out of the shared experience of suffering. God's Word became more real than ever because we were living it on every level. And our sense of humor, adaptability and personal compassion transformed us into better people.

In my work with families who have a child with a special need I often see two extremes. On one end, there are people who have a solid support system with loving family and friends who encircle them, lifting them through the toughest of times. More often, I see people on the other end. They are left struggling, feeling abandoned, shocked, disappointed and resentful. Like I did, they get stuck in the mindset of how things are supposed to be. But with open eyes and a small amount of effort on their part, their loving Creator has waiting for them blessings they never could've imagined. There are people who speak the same language as they and who know what is needed to get through a given situation. This can often be a much better, far reaching support than the close family and friends!

Regardless of how it comes, we are mandated to reach out to extend that kind of compassion to others if we have been down the same road of difficulty. Because we know all of the heartache, confusion and stress of parenting a child with a special need, we must give back to those who are not as far along on the journey as we are. In doing so, we will be blessed with more unexpected friendships who end up being the surprise allies when we experience a difficulty. Now THAT'S solid gold!