You Are Not Hidden

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You are not hidden… There’s never been a moment you were forgotten… ~ Lauren Daigle

Tonight I sat in a room full of people yet I was all alone…

As a parent of autism this is a place that is very familiar to me.

Finding yourself in situations where the circumstances of your journey…all the things that make your family “different” or not “normal” glare at you like a spotlight.

Tonight I sat in a darkened corner. In all fairness, the whole room was dark but when you’re in a corner it feels a little darker. I was in a room full of activity, full of people, yet I felt completely alone. The call for people to come forward, to find freedom in the moment actually didn’t apply to me. As I sat next to my sweet boy, lost in the world of whatever movie he was watching, I was more concerned that in this reverent moment he wouldn’t squeal or scream at the characters on the screen. In fact, as I tried to get into the atmosphere of prayer what I really silently prayed was that my son wouldn’t be a distraction.

All around me prayer and worship occurred yet I was not a part of it…at all. In my darkened corner I simply sat. Alone with my own thoughts, my own prayers, and an occasional kiss from my handsome companion, who was blissfully unaware of what was really happening around him. The spotlight glared and I was once again reminded that autism can often leave you feeling alone in crowd.

As I began to frantically journal my own prayers…I too became oblivious to the events of the room I was in. My focus rested solely on God.

I hear you whisper underneath your breath…I hear your SOS, your SOS ~ Lauren Daigle

As I prayed God reminded me that I am not the only who is living in the struggle. All around me are people fighting a battle…living every day feeling all alone in a sea of people. People who feel the tension of never being able to find freedom because of whatever struggle or burden is hanging around their neck like a noose…attempting to suck the life right out of them at any given moment.

Turning to God’s Word, as I often do when my heart is troubled, I began to read the words of Psalm 138. The words of the Psalmist poured into my heart and enveloped me like the God hug that they were…

As soon as I pray, you answer me; you encourage me by giving me strength…

The Lord will work out his plans for my life – for your faithful love, O Lord, endures forever.

I will send out an army to find you. In the middle of the darkest night. It’s true, I will recuse you. I will never stop marching to reach you. In the middle of the hardest fight. It’s true, I will rescue you. ~ Lauren Daigle

In the darkened corner…

Where no one else sees or understands the full extent of the pain or the struggle…God sees us.

We are not hidden, forgotten, or forsaken. Our God sees us and He meets us in that place of loneliness and isolation…if we would only allow Him in.

He is the God who sees us. The God who can carry us above our circumstances and take us to a place of peace that transcends all understanding.

Tonight in a room full of people it was just me and God. He met me in the struggle and reminded me that I am never alone, He is always near. And while very few people I know understand the complexities and ache of being a parent of autism…God understands. It was Him in that moment reminding me that He is my strength.

The musings of this blog are to tell you that God sees you too. Somebody who will read these words needs to hear that truth right now. You are the reason I wrote this blog. God told me you needed to be reminded that you are not hidden…you have not been forgotten or forsaken. God sees you. He is your strength and your protection. Trust Him! He has not abandoned you…

In the darkest night and in the middle of the toughest fight…He WILL rescue you!!! Let go and trust Him.

 

 

 

Be Kind

“Our life is frittered away by detail. Simplify, simplify.” ~ H.D. Thoreau

When you are a communicator whether by the written word or oration you want to grab people’s attention. You look for that catchy phrase, the story that can weave the web that will draw your audience in. However, sometimes simplicity says far more than grand tales or sticky statements. While culture tells us to bling it out or enhance its appearance with flashy baubles and accessories, simplicity strips it all away and shows us beauty in the rawest form. Simplicity reminds us that in its purest form God’s creation has a natural beauty that we often miss in the rush of insignificant details.

“Your smile is your logo, your personality is your business card, how you leave others feeling after an experience with you becomes your trademark.” ~ Jay Danzie

Today was a day like any other day, I had a schedule and I needed to stick to it. It’s the first of the month, which for me means a trip to our local county office for the department of community mental health. I had to turn in paperwork for the aides who work with my son. This is always a quick trip…in the door, paperwork dropped off, and out the door. The whole process usually takes about 5 minutes at most. However, today was different…today I met Ken.

As I entered the office I encountered a severely disabled man and his care giver. I soon discovered that the reason they had come to the office was a situation that this particular office could not help him with. What struck me instantly was neither the care giver nor the receptionist had a smile on their face. In fact both ladies looked somewhat annoyed with the man. As he continued to ask questions the receptionist seemed increasingly agitated. Now, I’m not going to lie, normally I would have been slightly put out because my 5 minute experience was already sitting at about 10 and I had yet to drop off my paperwork. However, I was calm, not irritated at all. Finally, the man said to the receptionist “I remember you. You were my first case worker. It is nice to see you again.” and with no smile and no warmth the women replied “nice to see you too.” Her attitude was so cold she could have solved the global warming issue in an instant.

In the moments that followed, the man exited my day as quickly as he entered it…or so I thought. With my paperwork dropped off I was on my way. But as I left the man and his care giver hadn’t gotten far in their own quest to leave. Not wanting to be rude, but needing to be on my way, I carefully maneuvered around the man’s wheelchair to make my departure. That’s when the course of my day totally changed. As I passed by I heard the voice, that I now recognized, say “are you a caregiver?” I turned with a smile “No, I have a son with autism and I had to drop off paperwork for his caregivers.” He smiled back, “My name is Ken” I couldn’t walk away now, “Hi Ken. I’m Nikki, it’s so nice to meet you.” He told me was 40 years old, just a year older than me, and he had been on his own with caregivers since he was 18. I tried to wrap my mind around his circumstances but I just couldn’t. Then his face changed a bit, he was pondering what he would say next. “Can I ask you a question?” Of course he could.  “Is it hard to have a child with special needs?” From that point Ken and I carried on a wonderful conversation. I admitted the challenges I face as I watch my son struggle but I also shared the joys of celebrating every little accomplishment like it was reaching the top of Everest. In turn Ken shared how humbling it is to need help with everything, from putting on his shoes to going to the bathroom. I soon realized Ken just wanted someone to talk to. Someone who was actually interested in what he had to say…he longed to be known. He also longs for a girlfriend, he told me she hasn’t come along…yet!

“I love the LORD because he hears my voice and my prayer for mercy. Because he bends down to listen, I will pray as long as I have breath! ~ Psalm 116: 1-2

I felt it…I knew it was coming as the Spirit began to stir in me.  I knew this was a God ordained moment so I let all my inhibitions melt away and the words tumbled from my mouth, “Ken, can I pray with you?” Without hesitation Ken grabbed hold of my hand. I praised my God for the gift of Ken, for blessing my day with his presence, and prayed that he would remind Ken, often, that he was wonderfully made for a plan and a purpose. With tears in his eyes, still holding my hand, Ken reminded me that God would never give me more than I could handle and I needed to stand firm on God’s promises because He is faithful. To which I reminded Ken that he could do all things through the One that gives him strength.

After a few more words exchanged my new friend drifted out of life. I wonder if Ken will ever know how profoundly he impacted my day and my life for that matter? It would have been so easy in my busyness to pretend like I ever never heard Ken call out to me. I could have justified the brush off all day long in my head. But as I stood in that office with the unsmiling caregiver and receptionist I couldn’t help but think of my own son. What happens when I am not here? Will people treat him with the same cold disdain? I had no idea in just a few moments God would test my ability to choose what matters most, to say a best yes and truly experience intentional investment.

“Unexpected kindness is the most powerful, least costly, and most underrated agent of human change. Kindness that catches us by surprise brings out the best in our natures.” ~ Bob Kerrey

All day I have reflected on my encounter Ken. The single thought that has been etched in my mind is how he grabbed my hand and held it as we prayed. I wonder how long it has been since anyone has held Ken’s hand simply as a gesture of kindness, friendship, or love? When was the last time he felt a tender touch that told him that he had value and worth?

As I ponder I hear the echo of my Savior words “‘You must love the LORD your God with all your heart, all your soul, and all your mind.’ This is the first and greatest commandment. A second is equally important: ‘Love your neighbor as yourself.'” Second to loving Him, God wants us to love one another. But in order to love one another we actually need to slow down long enough to notice people. We have to strip away all the baubles and the bling and to find the raw, natural beauty found at the heart of the simplest of concepts…kindness.

“In the end, only kindness matters.” ~ Jewel from the song Hands

Had it been left up to me I would have walked right past Ken today. Busy in my own thoughts, my own life, my own world. I would have missed a tremendous blessing. I cannot help but wonder how many blessings we walk right past every day? Little ways that God shows us He is always with us we miss because we are too distracted by the details to notice the important. How many opportunities to be the light and love of Christ do we squander because the noise of our chatterboxes has tuned out the still, soft voice of the Spirit prompting us to move?

Tonight as I write I am reminded that my Savior was never too distracted to invest in people. I see Jesus with the woman at the well, calling Zaccheaus down from the tree, eating at the table of Matthew the tax collector, healing the woman who was bleeding, and the list goes on. Kindness, born out of love, flowed out of Jesus and into those who encountered Him. The very people who society showed a cold disdain for, Jesus showed the tender touch of compassion and love. Today I was blessed with a Jesus moment…his name was Ken, the humble man who chose to intentionally invest in me. He illuminated the light of our Savior as he showed me kindness and reminded me of the beauty that can be found when we simply follow Jesus’ commands to love others as we desire to be loved. What a special gift I received. I will treasure it by following Ken’s example and investing in others, even for the briefest of moments.

 

 

Comfortable In Your Own Skin

“Be yourself. Everyone else is already taken.” ~ Oscar Wilde

Be yourself. Sounds easy enough, yet at some level it is the very thing that many of us struggle with the most. Why? Probably because we have parked ourselves on the corner of  Comparison Dr. and Not Good Enough Ln. which often leads us to one of two places… down the Insecurity Highway or along the Discontented Freeway. I mean let’s be honest, all one needs to do is enter the vortex known as Facebook to see how AWESOME life is for everyone else. The ultimate highlight reel to show you just how imperfect your life really is.

It’s funny, I actually wrote the above paragraph twelve days ago. My heart had been aching to write for quite some time so I set out to find my sweet spot once again. I got as far as that paragraph and then abruptly I stopped. What does a writer do when they have no words…I mean, literally the words would not come and they are somewhat essential to a blog post. So I walked away.

This morning I sat in staff prayer in tears. I was so defeated and I found myself confessing to God that just yesterday I longed to be anybody but me. I was beaten up…defeated and deflated. And even this morning in a room full of people I felt all alone. I was once again transported back to the place of isolation where nobody around me really understood my struggle. Part of me longs to keep it that way…because if I can convince them the struggle is minimal then maybe I can believe it too.

When you are a mother of autism you long for the day when you won’t see your child struggle at every turn. You cherish every little victory and rejoice when every hurdle is jumped. However, the unfortunate reality of autism is that just because a hurdle has been conquered doesn’t mean it will not reappear… 10 feet taller than it was the first time around. This is where I am living right now. Hurdles my son overcame years ago, I mean like 8 years ago, have resurfaced. We are back to melting down multiple times a day, obsessive compulsive behaviors off the charts. What is happening? I feel like I have climbed half way up Mt. Everest just to have someone kick me back down to the bottom. I gave everything I had to make the first climb and now part of me just wants to lay at the foot of the mountain and cry. It’s too big…I can’t make it move or wish it away, and I’m not sure I have the strength to climb again. So for the briefest moment I lay there wondering what it would be like to be someone else.

“If there is no struggle, there is no progress.” ~ Frederick Douglass

The beauty of who we are is not actually us at all, but rather it is whose image we were created in. That truth pierces my heart. My desire to escape, to be somebody else shouts “God you messed up!”  I am so consumed with the struggle that I lose sight of who I am. In the moment, however brief it is, I have forgotten whom dwells within me and the power He gives me.  I am so willing to concede defeat to autism when I have yet to fall on my face in prayer to the One who can actually remedy the situation. My spirit cries out “NO” while my flesh wants to crumble. As I cry it all out to Jesus…clarity settles in and I am reminded that His power is made perfect in my weakness. While the struggle is real and it is hard, it does not have the power to defeat that which belongs to God. We all have these moments, as hard as it is to admit…where the truth of our faith meets the reality of our circumstances. The world tells us to wallow, and believe me you can have a moment…but you cannot stay there. Because it’s in the midst of the struggle that God does His greatest work. It’s in the struggle that the power of the Holy Spirit comes alive within us. But…yes, there is always a but…will you let Him? the choice is always yours.

All around me I see it…the struggle. People looking into other people’s lives through the highlight reel longing to be someone else. When in reality, we all have struggles. We all have mountains before us at some point in our lives. Face to face with the mountain we all have a choice to make…we can lay at the bottom crying about how it’s too big and impossible to climb or we can trust that the One who dwells within us will give us provision for the journey. He promises that he will not fail or forsake us…but will we be audacious enough to pray without boundaries and bring every need before Him as if we TRULY trust He can and will meet our needs?

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” ~ Psalm 139:14

Tonight I sit here and these words, like soothing balm, wash over my beaten up spirit. I am reminded that autism doesn’t change this fact for my son…he is beautifully and wonderfully made. His identity is not defined by autism. His identity is wrapped up in one single truth…he is an image bearer of God. Uniquely created to serve a plan and a purpose far beyond what this worried mama could ever imagine. Because the one who created him loves him more than I ever could. Ahhhh…but here is the kicker… if I am going to embrace this truth for my son, then I must embrace it for myself as well. I too am fearfully and wonderfully made, uniquely equipped serve a plan and a purpose far more important than my own agenda and my own desire for a seemingly “normal” life.

Here I stand at the foot of the mountain again, I am weary and worn out. Climbing the mountain is hard…getting kicked back down is brutal. But as the dust settles from the haze of defeat I am reminded that I never made the first climb in my own strength and I will not climb again alone. I go with the full armor of God to protect me and the power of the Holy Spirit within me.

When I started this blog twelve days ago I would have never guessed this was the route it would go. That it would be a place where I would put the rawness of my own struggle out on display…to stretch out of my comfort zone to find comfort in who I am.

I guess to be comfortable in our own skin is being able to say “here I am” flawed and imperfect, worn out and weary, yet fearfully and wonderfully made. To be comfortable in our own skin is to recognize that what makes us beautiful and whole is not a physical attribute, or a picture perfect life. It comes when you know who you are and I know that regardless of my circumstances, I am a chosen daughter of God, created in His image to do His work, He will not forsake me or fail me…this I know full well.

 

One Hundred Percent of a Life: Part One

IMG_6480.JPGOne Hundred Percent of a Life

It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything
came crashing down
Slowly panic turns to pain
As we awake to what remains
and sift through the ashes that are left
behind ~ Steven Curtis Chapman (Beauty Will Rise)

Every day of a life matters. Every day of a life counts. In the book of Ecclesiastes Solomon tells us that there is an appointed time for every event that occurs under heaven. Our days are numbered and should never be taken for granted. In the blink of an eye everything we know our lives to be can change. Those are the days when we wake up one person and go to sleep a stranger to even ourselves. The person we were the day before is gone and all that is left is the wounded canvas to build who we will become.

“There is an appointed time for everything. And there is a time for every event under heaven. A time to give birth and a time to die…” ~ Ecclesiastes 3:1-2

I often think about how Mary must have felt on the day of the crucifixion. Watching her son, our Savior Jesus Christ, condemned to death by His own people, brutally beaten at the hands of Roman soldiers, mocked, and ultimately killed. How, with her mothers broken heart did she fall asleep that night? Longing for the child she would never hold again but knowing that His death was the blessing the world had been waiting for. Does that blessing soften the blow of loss? Was she able to reconcile her own heartache with the knowledge that God’s plan had been fulfilled? Or in that moment did she allow herself a few minutes to let the soul crushing heartbreak consume her as she processed that the child she birthed into the world, her son, was gone? I wonder in those moments of solitude if Mary secretly wished God had chosen someone else to be the mother of His Son. When the road gets hard and the pain is all-consuming don’t we all wish, even if only for a moment, that this was someone else’s journey and not our own.

It is so easy to gloss over biblical stories and dehumanize them because the details of raw emotion are not shared. I think this happens quite often in context to Mary and Jesus’ death. Because Scripture doesn’t focus on her feelings we tend not to either. However, a scene in the movie The Passion of the Christ completely changed my perspective on Mary in those moments. The scene is Jesus carrying the cross to Golgotha. Mary is trying desperately to see him and through a corridor she spies him as he falls to the ground and they make eye contact. The movie flips to Mary’s perspective and she has a flashback to toddler Jesus falling and needing his mother’s comfort. In that moment, like most mother’s, she kisses her son’s boo boo away. The movie then returns to the present and Mary weeps for the son that she can no longer help or comfort. What a different picture that paints for our imaginations. Mary, faithful and obedient servant of God, was indeed human and watching her son slowly walk to his death was a very real and painful valley for her to walk through. How enlightening it would be to know what fears and doubts she wrestled with in that moment…the very emotions that allow us glimpses into her humanness. The very emotions that make her just like you and me.

Francesca

January 07, 2008, was an unseasonably warm day in suburban Detroit. Sixty-four degrees is never what one expects to wake up to on a winter morning in Michigan. The day was unusual indeed, almost as if the weather was a sign that on this day nothing would be as it should be. In fact not much in our house that morning was normal. Monday is travel day for my husband. As a regional manager for a large cheese manufacturer, Monday mornings usually consist of an early alarm ringing so he can make his flight to head off to whatever destination the week has in store for him. This morning was different though, no flight to catch and no trip scheduled for the week meant our routine changed. On this weird Monday morning I actually had help getting the boys off to school and I could get our baby girl fed and changed at my own pace. Well, really at her pace cause let’s be honest a 2 ½ month old dictates the pace not the other way around. However, on this particular morning I was slacking a bit. While unseasonably warm weather in winter sounds great in theory, in reality it brought with it a misty rain, fog, and sinus headaches. You know the kind of weather that ultimately winds you up in the doctor’s office waiting for the confirmation that a sinus infection has settled in and the Z-pak would start immediately. It was starting out as a blah day, how I wish it would have stayed that way…

Francesca Isabella Catherincchia came into our lives on October 23, 2007. I will never forget it. American Idol on the television as my mom and I cleared the dinner dishes. My husband was at the church rehearsing for our upcoming Christmas production. As dinner ended I felt lower back pain and cramping but didn’t think anything of it. This wasn’t my first rodeo and having had false labor before I wasn’t getting too excited. I let my husband leave, never for one second thinking that this was the day. I was still two weeks away from my due date and while I had never had a late baby I was never lucky enough to go two weeks early. But it soon became VERY clear that this was it. How perfect, my mom was already at my house; babysitter for the boys, check, husband on his way home to get me, check, prayer warriors in place (my husband was at the church…duh), double check. This was it…we were having our baby!

All babies are special but Francesca was extra special because she was a dream come true and an answer to prayer. After our son, Santino’s, autism diagnosis I had all but given up the idea of having another baby. However, about 9 months after his diagnosis God had placed an unbelievable desire in my heart for another baby. Intense prayer ensued which included me crying out all of my fears of having another child. Studies had shown that families with one child with autism were more likely to have other children on the spectrum. What if that happened? Santino’s therapy schedule was rigorous and already adding stress to our family. Would another baby take us over the edge? Eighty-seven percent of parents with a child with autism end up divorcing. What if we didn’t make it? Autism was still so new to us what if we couldn’t handle a new baby too? I was scared to death and I needed God to understand that I had to trust His decision in the matter because I was all over the board. I vividly remember ending that prayer with these words “God if our family can handle another child please give me the desires of my heart, if we cannot please do not let it happen.” Five months later I was pregnant. God had given His answer and our precious girl was on the way. Interestingly enough, it was this very pregnancy that opened up the door for Santino to receive an in home therapy aide provided by the state of Michigan. The state has a program called the Children’s Waiver which is distributed to children with autism based on the number they score in an intake questionnaire. The more stressors you have on your household the more points you get. In the summer of 2006 we applied and Santino did not have enough points to qualify. However, when the time came to reapply in the summer of 2007 my husband had just lost his job and I was smack dab in the middle of my pregnancy…our stressors were off the charts and Santino qualified. Now, you tell me God doesn’t work in the details.

Throughout my pregnancy our oldest son Sammy would pray “Please God don’t let my baby have autism.” I think in his little 6-year-old mind he saw this baby as a do over. He was struggling with his brother’s autism so this new baby was his opportunity to have a brother or sister that would “talk to him” as he used to say. That was his prayer every single day, at home and at school. He would pray for his baby. Somewhere along the way the baby I was carrying had become his and the excitement would sparkle in his eyes when he would tell me all that they would do together. Yes, this baby was our family’s dream come true.

The moment the doctor said “it’s a girl” my heart soared. Two boys at home and now the little girl in my arms completed the perfect family I had always envisioned for Matt and myself. Sure autism had derailed us for a moment but in the wee early hours of that October morning we had victory…everything was right in the new world we created after our setback. I remember giving birth to my boys and seeing the tears roll down my husband’s cheeks at the precious lives God had given us. But when Francesca was born it was completely different. For the first time in 11 years another girl had captured my husband heart and it will forever remain one of the most beautiful moments I have ever witnessed. Francesca was born a daddy’s girl. Matt had always been a hands-on dad with the boys but with his girl he was absolutely smitten. Often allowing me to sleep, he would do night-time feedings just to have her all to himself. He had big dreams for his Bella girl, as he called her. Isabella being her middle name it seemed that his nick name was only natural. Actually his reference was always drawn from the fact that “bella” in Italian is beautiful and Francesca was his beautiful girl. She signified all that was right and good in our world.

To Be Continued…

Bittersweet Symphony

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Euphoria, noun: a feeling of great happiness and excitement. ~ Merriam Webster Dictionary

Euphoric high. That is what crossing a finish line feels like. Your body may be beaten and battered, your muscles may be screaming that they hate you…but when you cross…ahhhhhh…the high of accomplishment settles in. In that moment the high erases the pain, the set backs, and the obstacles. You revel in the victory of completion.
Every year that is how I feel on Marathon Sunday in Detroit. A euphoric high settles in, not just because I have crossed the finish line, but because once again God has left me in awe of what He can and will do through a group of people who are obedient to His call and faithful to the cause He has laid on their hearts. Every year I wonder how God will top the previous one and yet He always does. This year was no exception. Two days, 60 participants, one VOICE: Santino’s Voice. We were the voice of autism in Detroit for two days in a row and we were loud and we were proud. In us God has birthed a vision that the autism community must be heard and reached…awareness must be raised to bring forth understanding. We are a team that passionately wants every family that runs the race of autism to know that there is a God who loves them and there is hope and rest found in His arms. So we take to the streets, we pound the pavement, we run, we walk, and we do it all for the Glory of God. There is grace, there is acceptance, and there is love. We cross the finish line as individuals but we walk away forever connected as a team, inspired by a precious boy named Santino who runs the marathon of autism daily. We all walk away knowing that we CAN do all things through Christ, who strengthens us, because we see that strength and courage in Santino on a daily basis.

Bittersweet, noun: pleasure alloyed with pain. ~ Merriam Webster Dictionary

The dreariness of the day could not conceal the striking beauty of the fall colors. Deep burnt orange, vibrant red, even dull brown looked breath-taking in the landscape of trees and falling leaves. As I stared out the window I couldn’t help but be in awe of a place that I wish I could avoid, a place I never want to go. We parked the car and approached the little marker as the chill of the air appropriately settled in and chilled me to the bone. The thought crossed my mind, “what a difference a day makes.” Just the day before we were reveling in the accomplishment of our team and celebrating the victories and progress our son, Santino, has made battling autism. But here we stood, a mere twenty-four hours later, grave side, wiping away pine needles and cleaning the marker in the cemetery designated as a memorial to our precious little girl who would have turned 7 this week.  Francesca Isabella Catherincchia October 23, 2007 – January 07, 2008. The reality of the situation washes over me and I recognize that every year I find myself at the bittersweet crossroads of the finish line and the cemetery. I celebrate the accomplishment of one child while my arms ache to hold another, just one more time; to smell that sweet baby smell that was uniquely hers even if it is only in the breeze that fills the fall air.

“There is no greater agony than bearing an untold story inside of you.” ~ Maya Angelou

God is a storyteller, this I know for sure.  Every day that I have the privilege to open my Bible I become more acutely aware of just how important His story is…it is the very lifeline of my life.   Then the light bulb goes off and I realize that God story is far from over and we are all living in the midst of it.   Think about the enormity of that truth…Our God is a story-teller and His story is still actively taking place…WOW!!!  The book of Genesis tell us that we, humanity, are created in the image of God.  Therefore, if my God is a story-teller and I am created in His image…then I must be a storyteller too…my story matters.  That is why there is agony in the untold story…our stories are meant to be told.  In every story…happy, sad, triumphant, and tragic…the beauty of God’s hand print can be seen if we just open our eyes and lift them up to the One who has created us.  I have found, in my own story, that God’s grace does abound when we go through the hardest struggles, when we find ourselves in the deepest oceans, battered by the strongest waves.  It is there that He reaches down to us and the power of His story blends with the fragility of our circumstance.  The result is the epic tale of a Sovereign God who loves His people so much that the pain and heartbreak of this life are never carried alone, but He indeed carries us through the storms.  He brings us to the other side better than any human mind could ever fathom.  Heartbreak is never an end when you walk with God…it is the beginning of new and beautiful normal that is birthed by that showering of His love and grace.  This is a story that matters, a story that needs to be told.  Because in the agony of silence is the robbing of blessing.  When we remain silent we rob those who are suffering from the hope that is found in our Savior.

“Spirit lead me where my trust is without borders…” ~ Hillsong United

Back in the summer I prepared a book proposal, If any of you know anything about the publishing world you know that this is a very detailed lengthy project that includes writing at least one to two chapters of the manuscript that will ultimately become your book, at least you hope it will.  I knew, for some time, that God wanted Francesca’s story told.  I had been encouraged by a few people to pursue that prompting but I held off my obedience until an opportunity sat before like a neon sign screaming “Will you be obedient NOW?!?!”  In July as I prepared for the She Speaks Conference an opportunity was presented to me on a silver platter to meet with a few publishers.  In all my preparation for this conference, emails and webinars and such, the one thought that was continually stressed was…”the point is not to get published, the point is what God is going to do through the process.” That sounded great but so did the idea of getting published.  As I sat nervously before the acquisition editor of a major Christian publishing house the question was posed to me, “What will you do if you do not get a book deal?”  With all confidence I answered, “I will continue to tell my daughter’s story.” I knew that a book deal was just one of many different avenues in which I could tell the story that God wanted me to share.  If it happened great and if it didn’t, rejection would not silence me.  So, here I sit months later…no book deal and no real desire or prompting to write the rest of the book.  My mind travels and I wonder about the loose ends of an unfinished book and then these words echo in my head “the point is not to be published, the point is what God will do through the process”.  Writing Francesca’s story was one of the most healing and precious moments of my life.  Writing a full memoir of my journey was never the point…the point has always been to share how God touched the lives of so many through Francesca.

My only qualification for being God’s story-teller is that He allowed me the honor of being Francesca’s mother; I had the privilege of bringing her into this world and holding her as she exited it.  I had a front row seat to witness one of the most miraculous and precious lives I will ever know and now God would like me to share her with all of you. Yesterday as I sat at the bittersweet crossroads of the finish line and the cemetery I knew it was time…time to share Francesca’s story.  The Spirit has led me to where I must trust that this is what God has called me to do even though it scares me, for the words that I will share will be like my diary opened for all the world to see.  But I trust that God has a plan and a purpose for this story.  Starting tomorrow, through this blog, I will share Francesca’s story.  The chapter I wrote for my book proposal will posted in this blog over the course of the next few days.  My prayer is that it will bring healing and hope to all those who are heartbroken or find themselves at a crossroads.

 

Fix Me

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I once had a complete stranger call me, a lady who knew of me through someone, and say “if you would just put your son on the gluten free diet you could cure his autism…he would be alright.” Wow!!!  Talk about being caught off guard.  “Alright”…now there is an interesting adjective.  “Alright” falls into the same category as “normal” for me.  Both words project an image of how things should be rather than a truth that is achievable.  This morning I found my self reading a wonderful article in Psychology Today about this very thing in relation to parents of children with ASD (Autism Spectrum Disorder).  So many people offer advice to parents with special needs children but I wonder how many of them take the time to think about how their words are processed in the minds of a parent fighting the battle of a lifetime for their child?  I wonder how many people who are offering up such advice have ever walked a day in the shoes of a special needs parent?  If you get a chance I highly recommend you checking out the article.  Not only because it offers outstanding insight but because you will also understand what prompted my heart to write this post.
http://www.psychologytoday.com/blog/the-wide-wide-world-psychology/201409/parenting-child-autism-resist-pressure-find-success

“Many parents equate success to having their child act more like a “typical kid,” displaying as few characteristics of autism as possible.”

I can not begin to tell you the amount of times that Matt and I have heard in regards to our son, Santino; “he’s going to ok, right?” “He’s going to be able to talk, right?” “What are you doing to make this better?” “Did you know that if you just (fill in the blank) he would be much better, all better, CURED?”  And with all of those well meaning questions comes the neon sign that screams “YOU ARE NOT DOING ENOUGH”. Parents of ASD are trapped in this claustrophobic vortex that has them believing if they don’t try every magic autism bullet then they might just miss the very one that could have been the cure for their child.  Because the goal is to make our children “alright” and “normal”…right?!?! That is the American dream, if something is broke we fix it.  But how can you give advice on how to fix something if you don’t fully understand it? I wonder how many people actually realize the cost of all the things they are recommending when they tell parents about the new miracle autism cure they read about or heard on the news? Holly Robinson Pete once answered the cost question honestly when asked by Matt Lauer…$150,000 a year…that’s how much they pay a year for their child’s therapy.  Last time I checked the average ASD family cannot afford even 10% of that figure.  You know what that figure looks like spelled out for Santino…nine years diagnosed at $150,000 a year = $1,350,000…so far.  Last time I checked Trump was not my last name so that therapy bill is a no go for my son.

“Mothers of children with autism have stress levels comparable to combat veterans” ~ University of Wisconsin-Madison

Back up.  Did you just read that quote?  Now reread it?  My jaw hit the ground when I first stumbled across this finding.  I think I may have even said a prayer of thanksgiving.  Not because I put myself on the same playing field as the American heroes who have risked their lives and seen and experienced the horrors of war.  Believe me I am no hero and I do not believe I should be equated to those who have rightfully earned the title.  However, this finding does show just how hard living with autism is.  How brutal it is to want to help your child so desperately but having to come to terms with that fact that every child with autism is unique and there is no one therapy method, pill, diet, or magic potion that will work for every child on the spectrum.  What the parent of ASD has to come to terms with is throwing away words like “alright” and “normal”.  Those words are subjective at best and when people place pressure on parents to therapy their children to that goal they set them up for failure.

“Oh yes, you shaped me first inside, then out; you formed me in my mother’s womb.  I thank you, High God – you’re breathtaking!  Body and soul, I am marvelously made!  I worship in adoration – what a creation!  You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing to something.  Like an open book, you watched me grow from conception to birth; all the stages of my life spread out before you, the days of my life all prepared before I even lived one day” ~ Psalm 139: 13-16

Long ago Matt and I abandoned the trap of “normal”.  We have worn an armor that allows us to smile and politely say “thank you” when the “did you know” questions come in by the well meaning person who became an autism expert after watching Nightline, Oprah, 20/20, 60 Minutes, or the NBC Nightly News.  Walking away from the pressure of “we need to do more” was the hardest but wisest decision we have ever made.  It was hard because the mind wants to play the “what if?” game with you and with autism there is always something else you could be doing.  However, it was the wisest because we recognized that in a quest to make Santino “normal”, in an unrelenting pursuit to fix him, it would be so easy to forget that our little boy is so much more than his autism diagnosis.  Along the way God opened our eyes and our hands to let go of the need to fix Santino.  We don’t need to fix our son because autism didn’t break him.  We discovered the truth…the one thing that is not subjective is the simple fact that Santino is fearfully and wonderfully made.  His being “alright” doesn’t hinge on him looking “normal”, his “alright” hinges on the fact that God created him and He has a purpose and a plan for his precious life.  Helping him reach the fullness of God’s plan is what makes him “alright”. There is no better Santino than the boy I see squealing with laughter, the boy whose eyes dance with joy.  We do what we can with the resources God has blessed us with.  Santino has a wonderful team of therapists, aides,and teachers who have put together a therapy program that will help Santino and we have full confidence that by the grace of God Santino will reach his fullest potential.  Notice I said fullest potential not; cured, normal, or all better.  We must never lose sight that it is in our weaknesses or what the world calls our shortcomings that God makes us strong.  I believe with all my heart that God will use Santino and his autism to bless many.  How He will do it, I don’t know, I just know that He will.  

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, a honest compliment, or the smallest act of caring.  All of which have the potential to turn a life around.” ~ Leo Buscaglia

During a public melt down how I long to see just one reassuring smile…one person who isn’t judging my parenting or labeling my son a brat.  How I long to tell the lady in the doctors office staring at my son that she is rude.  The secret yearning to make this my Facebook status from time to time;  “I love it when you give me unsolicited parenting advice about my special needs child.  Your criticism is great greatly appreciated. – Said no mom ever!”  How I wish people understood the way their stares unnerve my older son and make him feel uncomfortable to be in public with his brother.  This is the why many parents cling to hope of “normal”.  “Normal” doesn’t get stared at, it isn’t judged, it isn’t dissected, it doesn’t kick your butt on a daily basis.  It also isn’t realistic.  What if I told you that your reaction and interactions with a family with autism could make all the difference in the world?  Would you sit up and read a little closer?  Would you want to know what an ASD parent really needs to hear from family, friends, and strangers a like?  I can tell you and it’s really not that hard.  Instead of telling an ASD parent what they could or should being doing better, what if we all lifted our voices in encouragement.


“I see what you’re doing with your child and I think it’s wonderful.”


“I know you are already doing so much for your child but I saw this special on TV and they talked about (fill in the blank) have you ever heard of that?”


“I heard (insert the child’s name) say a new word, offer a smile to a stranger, interact with another child, go melt down free, etc. that is so awesome, I can see the progress they are making.  All the hard work is paying off.”


These are the words the often worn and beaten down parents of ASD need to hear.  They don’t need you to tell them what they are doing wrong or what needs improvement…they already feel inadequate for the job they have.  They don’t need you to stare at them during a meltdown…they are already shattered by having to watch their child struggle so terribly.  The one thing the family of autism knows for sure is that they are different…no one needs to highlight that for them.  That is often a painful and lonely reality.  What is the remedy?  Kindness.  How simple is that…be kind.  Parents with children of autism don’t need you to help them fix their child, they need you to show them kindness, love, and compassion.  There is no quick fix for autism, no easy or sure therapy method for success.  There is a famous saying that states “if you know one child with autism then you know one child with autism.”  Autism is unique and different for every single person on the spectrum.  But autism is just a part of who these precious people are.  They do not need you to fix that part they need you accept who they are as a whole.  To see the fearfully and wonderfully person that God has created for a purpose.

“If I could snap my fingers and not be autistic, I would not. Autism is part of who I am.” ~ Dr. Temple Grandin

Success for my child is not dependent on fixing him.  Some of the greatest and most creative minds have belonged to people on the spectrum; Mozart, Einstein, Newton, Grandin, etc.  In the article I read this morning the author stated that success, like beauty, is subjective…it truly is in the eye of the beholder.  For me success will never equate “normal”.  Who defines normal anyway?  Success for my son rests in the hope that God has created him for a plan and purpose and that He has given us the resources we need to unlock his full potential.  I cannot worry about my lack of money or my inability to try every autism therapy out there.  All I can do is trust my God and pray bold, audacious prayer circles around my son.  My hope rests in the words of Jeremiah 29: 11-13 “For I know the plans that I have for you; declares the Lord, plans for welfare and not for calamity to give you a future and a hope.  Then you will call upon me and come and pray to Me, and I will listen to you.  You will seek Me and find Me when you search for me with all your heart.”  When you see my child do not see a boy broken by autism…see a beautifully created child that needs acceptance, a little extra help, and a whole lot of understanding.  See a little boy who has a bright future because God has a purpose for him.  He is not a problem that needs to be fixed, he is a person that needs to be loved for who he is.

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.