Holy Discontent

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Nobody told us 8 1/2 years ago when our youngest son was diagnosed with autism just how dramatically our lives would change. How could they? How can you ever explain the unknown? Sure we had an amazing doctor who clued us in on the uphill battle we were about to face but nobody could have ever warned us what the day-to-day living in the trenches of the war zone called Autism would be like that. That is what autism is, a constant battle. You fight for recovery, you fight for understanding, you fight for least restrictive environments, you fight for acceptance, you fight to overcome sensory issues, you fight, you fight, you FIGHT!!!! Sometimes you get some good punches in and sometimes you are pummeled to the ground a mere second away from tapping out. My husband often tells me that I cannot expect people to understand what they do not live. Therefore there is always a portion of my life that few people really get. In the beginning even if I had wanted to explain I was often too battered and too tired to take the extra energy to open my mouth. I have now come to realize if I want people to even remotely understand, accept, and embrace my son then I must speak up about the reality of living with autism. I must use the voice God has given me to be the loudest advocate for autism awareness. Why? Because no one understands autism better than those who battle with it on a daily basis. Every day I watch my brave little solider carry on regardless of what that day holds for him. The least I can do is speak the truth of his journey, to be the voice that autism has robbed him of.

“Come to me, all you who are weary and burdened and I will give you rest.” ~ Matthew 11:28

God’s faithfulness abounds, this I know full well. The Sunday after our son was diagnosed with autism my husband and I attended a new church. We were so fragile…so close to breaking. I wonder if the people we encountered that blustery, cold January morning in 2006 had any clue just how close we were to falling over the edge? Our world was crumbling around us yet we were trying so desperately to hang on to the only thing that made sense, God. From the moment we stepped foot into this church…a church I had driven by hundreds of times in my life but never once gave it a passing thought…I knew God had led us there. His love enveloped us the second we walked in the door. I’ll never forget the lead pastor immediately walking up to us, recognizing that we were new to his congregation. There was something in his greeting, in the worship, and in the smiling faces that told us we were home. We instinctively knew that this was where God would heal the wounds of crushed dreams and lost expectations. This was where God would birth the new creation He was forming our family to be. This was going to be our family in Christ and even though nothing made sense we knew that in the arms of our Father we would find rest. We knew God was a preparing a way for our son’s journey and that He was making sure His presence was all around us.

“The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'” ~ Matthew 25: 40

95%. Yeah, I know the rule of grammar that states all numbers at the beginning of a sentence should be spelled out, but I don’t want to. I want you all to see…95%. That’s the percentage of parents of special needs children that do NOT attend church. I’ll never forget the day I first read that statistic, my jaw hit the ground. Why do they not attend church? Because most churches cannot accommodate them or they have had such horrible experiences at churches in the past that the attempt to go is, quiet honestly, not worth it. Can you ever imagine being in a place where you feel like you can’t go to church? I can! Yes, you read that right, I can. As much as I love my church family and I know my church loves my family, I still get nervous when my son comes to church with us. I say when he comes because usually he stays home with his aide while we attend church as a family of three…always slightly incomplete. It’s funny, as a kid I hated when my parents forced us to go to church together on a weekly basis; today I would give anything to be able to have my whole family sitting together Sunday after Sunday but that just isn’t our reality. On the Sunday’s we do bring our son I always walk in a bit on edge. Not because people don’t love and adore him but because there’s always a possibly of a meltdown, always the swaying and fidgeting, always the talking “3 more songs THEN all done.”, and always the fear that he’ll make a run for the stage (I won’t be surprised if he’s in a praise band one day). As active as we are in our church these fears still creep in. What if a visitor sits by us? Will he be a distraction? These are all the scenarios that run through my head. I cannot imagine how it must feel for that family that knows no one…the family that is so beat up and worn out by the battle that all they want is a place to find hope only to discover that the one place that should offer them hope doesn’t know what to do with them. Lack of resources for the special needs community is a silent epidemic in the church. Until recently nobody even really talked about it. It is the elephant in the sanctuary. There is a whole demographic of people not being reached and yet the church has been awfully slow in its response. If you want a mission field I just handed you one…95% of special needs families do not attend church. I can guarantee that figure breaks the heart of God.
In 2009 my husband and I sat in the Global Leadership Summit hosted by Willow Creek Church out of Chicago. Every August the WCA hosts a world-class leadership conference that, quite honestly, everyone should attend. Christian or not, these are two of the most motivating and challenging days of the year. However at this particular Summit Bill Hybels, Lead Pastor at Willow, spoke about having a “Holy Discontent”. A Holy Discontent is something you can no longer stay quiet or inactive about. A Holy Discontent is a wrong, an injustice, or inactivity that needs a champion. A Holy Discontent stirs a passion in you to move forward to make a change. A Holy Discontent says “enough!” A Holy Discontent screams “what is unacceptable to God is unacceptable to me!” It will come as no shock that my husband and I both walked out of that session shaken…our world rocked to the core. God’s Spirit stirred in both of our hearts. Out of that session we both knew that 95% statistic was our Holy Discontent. The church had left a whole community of people behind and that is simply not okay. It’s not okay to us and it is certainly not okay to God.

“The local church is the hope of the world” ~ Bill Hybels

My husband and I walked out of that Summit forever changed. That year God whispered a vision into both of us. His vision was for us to gather a team of people to run in the Detroit Free Press Marathon to raise Autism Awareness. This team has grown from one member to almost 100 members in five years.  It is very safe to say that God has placed some pretty amazing people around this team.  Runners, Walkers, Supporters, and Prayers…Santino’s Voice has it all and His hand is on us all.  Our team was initially started to raise money for our son, Santino’s, many therapies. But God’s vision for this team is so much bigger. Our real goal is to be a non-profit charity that raises money that will be used to give scholarships to churches to help start special needs ministries. It is our belief that special needs ministries should be a non-negotiable for all churches. Every church desiring to reach all people must be able to accommodate all people.
Today right before my eyes a miracle took place. As a sat watching this year’s Global Leadership Summit it happened. Bill Hybels used his global platform to highlight the special needs ministry at Willow Creek Church. Picture after picture of these precious children of God caused my throat to choke up and my eyes to mist. Then the music started, Katy Perry’s “Roar”. On the screen these true champions “Roared” all the way to the Summit stage.

“You held me down, but I got up
Already brushing off the dust
You hear my voice, your hear that sound
Like thunder, gonna shake the ground
You held me down, but I got up
Get ready ’cause I had enough
I see it all, I see it now
I got the eye of the tiger, a fighter
Dancing through the fire
‘Cause I am a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion, and you’re gonna hear me roar!” ~ Katy Perry

What a perfect song. A song of resilience, a song that speaks to the spirit of this community. They get up over and over again. The challenges they overcome on a daily basis would bring most of us to our knees but here they where, right before our eyes, pure joy illuminating from their smiles. I sat there, tears freely running down my cheeks…yep, it was the full on ugly cry. These we tears of a mama that was thankful that God’s forgotten children were forgotten no more. Bill Hybel’s just put them on display for the whole world to see. In that singular act he illustrated that we are all “beautifully and wonderfully made”, created by the God who loves us and desires for ALL of us to know His love and the hope that is found in His Son, Jesus Christ.
Today was a game changer. There is no going back. It is time to step up and fulfill the promise that “the local church is the hope of the world.” The hope is birthed when we leave no one unreached. It is our job, we have been commissioned, to bring the name and the gospel of Jesus Christ to all people, in all nations, to the ends of the earth. ALL people…no one is forgotten, no is left behind. Starting doesn’t need to be complicated; simply ask God to allow you to see all people the way He sees them, to love people the way He loves them.

3 thoughts on “Holy Discontent

  1. Nikki, as I read your blog today I was brought to tears! I knew that Santion’s Voice was initiated to bring autism awareness to the public, but I am ashamed to say that I did not know the greater journey Santino’s Voice was on. Please forgive me! My hat is off to you Matt and Sammy for being the voice and actions behind such a God Spirited cause. May God Bless you all and “Santino’s Voice.’ This is a wonderful blog and so worthy of sharing. I love you Nikki!!

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  2. Felt like I was back when Brendan was young and the kids picked on him and people stared at him as he was “weird”. Al and I stopped going to church for a bit or sat in back row for a quick exit. Love to be a part of the plan and solution. Much love!

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  3. Your blog brought me to tears. It’s encouraging to see the way God is working through you to spread his love, word and the Gospel! Keep up the good fight!

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