Friday, February 4, 2011

What's in your hand?

This particular blog post has been a long time in the making; mostly because it is a difficult tale to tell.  But it is a story I feel compelled to share, with the hopes that somehow God will be able to use my story to help someone else.  It’s the story of my journey through autism…the darkest, saddest days of my life so far.   For me to be able to share this story honestly with you I must confess that even to this day I struggle with Austin’s diagnosis and on really bad days I still grieve for the future I thought he would have.  My heart aches for the child that was taken from me, knowing that I will never be able to see what Austin would have been before autism.  Before that dreadful diagnosis came and stole my beautiful little boy in what seemed like a blink of an eye.  But every now and then I take this little trip down memory lane to remind myself that God’s hand has ALWAYS been on Austin’s life, even in the midst of autism.  And He is still there, right in the middle of my personal storm.  To be the Rock that I cling to when the waves are so high I think I might drown.  I remind myself that since the very beginning it has always been my prayer that on the other side of autism, no matter what that may look like, that God would get ALL the glory for Austin’s life.  So pull up a seat and get comfortable while I take you on a little trip down memory lane…
My second child, Austin Wade, made his entrance into this world at 5:52am on Tuesday, February 26, 2002 in a hospital in Dallas, TX.  Not many people were there to welcome little Austin into the world since it was so early in the morning.  It was just me, Eric and my older sister Sandi.  And even though there wasn’t a huge crowd like there was when Michael was born, there were still loved ones celebrating with us in spirit.  I distinctly remember my sister calling my Mom and Dad, who live in Ohio, to give them the news.  She told them his name (we had kept his name a secret) and held the phone up so they could hear him cry.  When my Mom heard his little cry she began to cry.  This was her third grandchild, but it was the first grandchild that she wouldn’t be able to hold at birth since they lived so far away.  It was a bittersweet moment for me.  For a brief moment it almost felt as if they were right there with us, welcoming this new life into the world.  That cold February day marked the beginning of a life-long journey that I was about to take...a journey that would lead me to the highest mountain tops and some of the lowest valleys…a journey that I would NEVER have chosen for myself.
Over the first couple of months of his life, little Austin proved to be a pure joy!  He was polar opposite of his older brother Michael, which is one of the things that I loved most about him.  He was a chunky little thing and I couldn’t resist squeezing and loving on him every chance I got.  He was very mild mannered with a smile that was infectious.  At every check-up Austin continued to make growth, constantly meeting all of his milestones right on schedule.  He rolled over at 4 months, sat up at 7 months and crawled at 8 months…right on target.  Even though he was a quiet baby he was very social.  Always smiling and laughing.  He had eyes only for his Mommy, he loved playing peek-a-boo and patty-cake with his brother and loved sleeping next to Daddy on the couch.  Around 9 months of age he started to wave his chubby little hand and say “bye bye”, he also said Momma and Dada beautifully.  And just like his brother he walked at 14 months to the day.  Smiling and laughing as he waddled to Mommy with a foam toy in his mouth.  So adorable, so precious, so perfect.  But all of that was about to change.
I took Austin to his 15 month check-up on a Friday at the end of May 2003.  His check-up was routine.  He was growing beautifully, still meeting his milestones…nothing to worry about.  He also got shots that day which were routine as well….again, nothing to worry about.  I remember this day because that next Monday was the day we left for Church Camp.  Eric had just started his job as a Youth Pastor at our church and one of the main summer responsibilities was taking a group of kids to Church Camp.  It was not our first year to go to Church Camp but it was our first year to go as adults in charge.  We were very excited about it and since we would be so busy with the youth kids all week I asked my older sister to keep Austin for me.  I wanted to be able to spend time with the teenage girls without the responsibility of dealing with an infant too.  She agreed and was so sweet to come to my house and watch Austin that entire week while we were gone. 
While we were at camp I kept in touch with my sister several times every day.  On Tuesday, when we spoke she mentioned that Austin started having diarrhea the night before and he wasn’t eating well.  She also mentioned that he was gagging on his foods.  I thought it was a little bit odd but he didn’t have any fever so I didn’t think there was anything to worry about.  He wasn’t acting sick so I told her to just make sure he stayed hydrated and let me know if it got worse.  I thought it might be related to his shots because Michael had gone through something similar with his 12 month & 15 month shots so I really didn’t think there was anything to worry about it. 
On Wednesday of that week I had planned on helping out in the Children’s Chapel with the puppets instead of going to Youth Chapel with Eric and the youth kids; but at the last minute I changed my mind and went to Youth Chapel.  I sat down hoping that I could stay awake through chapel since we had been up so late the night before laughing, talking, stuffing our mouths with marshmallows and eating all sorts of other unhealthy foods.  I had hoped it wouldn’t be boring.  So I settled in like everyone else to listen to what he had to say.  When the speaker got up on the stage the first thing he said was “Hold out your hands in front of you.  Open your palms and close your eyes.”  Then he asked us this question, “What’s in your hand?  What are you holding onto so tightly that you won’t let God have it.”  I immediately started to cry.  I knew EXACTLY what was in my hand that I was afraid to give to God.  It was my children.  I had struggled with giving God my children since the day Michael was born.  I like to be in control of things.  Giving control of something as big as my children was something I wasn’t willing to do…not even to God.  So the instant that question was asked my resistance failed and God was finally able to break down all of my walls.  I sat through that entire message crying because I knew what God was asking of me and I was terrified to do it.  What if He takes my children from me?  How will I go on?  What if I don’t let God have the control over my boys’ lives?  Will he take them from me anyway to punish me?  All these thoughts ran through my head as I struggled against the convicting power of the Holy Spirit.  I am not sure what else the speaker said that day because my mind was elsewhere deep in thought.  I just couldn’t get past the first question “What’s in your hand?” At the end of the message the speaker offered an invitation of sorts to everyone.  He said if you were willing to let go of what was in your hand, walk down to the front, write it down and nail it to the cross.  I am positive that I was the first person out of my seat that day in a room full of about 200 people.  I walked straight to the front, tears rolling down my face and I wrote “My children, Michael and Austin” on a piece of paper, picked up a hammer and a nail, walked over to this huge wooden cross and nailed my children’s names to that cross.  In that very moment I told God that he could have my children…they were His anyway.  I was done holding onto them.  I was giving Him control of their lives.  He could do whatever He wanted to with Michael and Austin.  And then I prayed that whatever He decided to do with them that He would give me the strength to be able to handle it.  I wasn’t in control anymore.  I remember getting up and walking right up that center aisle towards the back door.  I had to get out of there…so much emotion.  I was a mess and needed some time alone.  As I left the chapel all I could hear was hammers hitting nails into the cross.  I felt like a weight had been lifted.  What a beautiful thing.  I wouldn’t think about this day again for another year and by then my decision would have a whole new meaning to me.
Over the next couple of months Austin lost his infectious smile, he lost his eye contact, he stopping talking and he even regressed in his eating.  It was like he forgot how to eat solid foods overnight.  He gagged on all of his solid food so we went back to baby food.  It was the only way he would keep food down.  His pediatrician recommended he have a barium test done so we took him to the hospital for that test.  His results showed that nothing was wrong physically with his GI track so they referred him to a pediatric therapy center for Speech Therapy and Occupational therapy to help with his eating problems and sensory issues.  After he was evaluated there they recommended he have his hearing checked to rule out the possibility that Austin was deaf since he wouldn’t respond when his name was called or when anyone spoke to him.  And by anyone that included me.  I would walk into a room and he wouldn’t acknowledge my existence.  I would call his name and he wouldn’t look at me.  When by chance he did look at me he just stared at me with hollow eyes.  There was no life in his eyes.  The light was gone.  Austin’s hearing test came back normal.  I could have told them that.  I knew he could hear because he would come running across the house when he heard Elmo on the TV.  What didn’t make sense to me was that he didn’t seem to hear anything or anyone in his environment.  It was almost like his body was there but “he” wasn’t there.  He just seemed empty. 
In August, after all of the testing was completed, Austin started Speech Therapy & Occupational Therapy two times a week.  By this time he was 18 months old.  I drove him to therapy twice a week and sat there in the therapy room baffled at his behavior.  I would watch him and wonder what is wrong with him?  I would ask his therapists “What makes a child lose their eye contact and their language?” or “Why does he walk circles around objects on the floor?” or “Why won’t he respond to me when I talk to him?”  The answer was always the same “Let’s wait until he is 2 and if you still have these concerns we can refer him to a Developmental Pediatrician to evaluate his delays.”  I was fine with that answer…it seemed reasonable enough to me.  After all I really didn’t think there was anything seriously wrong with Austin.  I just thought maybe he was a little bit behind and he would eventually catch up to where he needed to be.  I was totally “fine” with that answer until right after Austin turned 2.  Then everything changed.
I remember the night I realized something was really wrong with Austin like it was yesterday.  It was a Wednesday night and I had stayed home from church because I wasn’t feeling well.  I had kept Austin home with me and sent Michael to church with Eric.  It was March of 2004...Austin had just turned two.  I was sitting on the couch watching the Disney movie “Dumbo” with Austin.  It was one of his favorite movies.  He would get so excited when the pink elephants on parade part would come on.  He would run around the room flapping his arms with excitement.  After the movie was over Austin kept walking back and forth behind the couch, running is hand along the back of the couch, staring up at the ceiling.  I sat there and watched him for a few minutes and then I called his name.  Nothing.  I called his name again this time a little bit louder.  Nothing.  I knew he could hear so why wouldn’t he acknowledge me when I was speaking to him?  I was 5 feet away from him.  The next time I yelled his name.  Still nothing.  He just kept walking back and forth, running his hand along the couch looking up at the ceiling.  My heart sank into my stomach.  At that moment I knew that there was definitely something wrong with Austin.
The next day I took him to therapy like usual.  I walked with him into the therapy room.  I sat down and looked at his therapists and told them I thought that there was something wrong with Austin.  They just looked at each other and told me that maybe it was time to send Austin to a Developmental Pediatrician.  I agreed and we started the paperwork.   I left that day in what seemed like a fog.  I remember sitting in the parking lot at Walmart crying.  I called my Mom and told her that I thought that there was something wrong with Austin and she said “I do too.”  My fears had been validated and my heart dropped again.  She told me that she thought he had autism.  I asked her why she never said anything to me before and she told me that she had prayed that God would give her peace about when to say something to me.  I guess today was that day.  I looked at Austin in my rearview mirror and thought…autism?  Like Rainman?  How did that happen?  I went straight home, got on the internet and immediately started researching autism.  He seemed to fit the profile.  My heart just broke into a million pieces.  I lay in bed that night praying that God would give Eric and I wisdom about where to go from there.  I asked that God would give me the grace to be able to accept his diagnosis no matter what it was and that whatever the outcome was that God would get all the glory.
On April 22, 2004, Austin was diagnosed with moderate to moderately severe autism.  To say I was devastated would be an understatement.  I was incredibly sad.  I felt like I was grieving and in part I was grieving for the child that I had lost and the future I had dreamed for him.  I knew that I wouldn’t make it through this unless I leaned completely on the Lord and that is exactly what I did.  I quickly began my search for treatments that might help Austin.  I worked tirelessly on this…day in and day out.  I spent hours on the internet looking at different types of therapies that we could try and then I would go to bed and lay awake crying for the child that I had lost. 
That summer of 2004 in the midst of gathering information on Austin’s medical history for an appointment we had with a specialist, God reminded me of that wooden cross and the promise I had made to Him the year before.  I was sitting in the youth room with Eric and the youth kids one Wednesday night for our weekly lesson when it happened.  Eric asked the kids if they could think of a time when they were in a church service and they felt the presence of the Lord in the service.  One of the kids said that they had felt God’s presence at Church Camp the summer before.  That’s when it happened.  I heard that still small voice saying, “Remember your promise?  You gave Austin to me.  You told me that I could have him.”  That’s when I realized that Austin’s onset of autism had begun the very same week I made that promise to God.  The same exact week.  That wasn’t a coincidence.  That was God’s perfect timing.  If I had seen the storm that had been brewing I wouldn’t have stepped out of the boat.  I honestly don’t think I would have released the control if I had known what was going to happen. But I am so glad I didn’t know then what I know now.  I am so thankful that my heart reacted with blind faith to the fact that God would take care of my children better than I ever could.  After all, He loves them more than I ever could.  This realization encouraged me and gave me strength.  It was a reminder to me that God has ALWAYS been in control of Austin’s life.  From his very first breath of life to his onset of autism…God was always right there.  Even in the middle of the storm. 
I often have friends (and even people I don’t know that well) tell me about this story they read, this show they saw on TV or this kid they know that had autism and one day just snapped out of it.  I think they tell me this as a means of encouragement.  They think that they are giving me hope that maybe just maybe that might happen for Austin.  But the reality is – it probably won’t happen for Austin.  I know with all of my heart that God chose autism for Austin and I am OK with that.  I will probably never know the reason why, but I trust that the loving God that I serve has a plan for Austin’s life.  I don’t know how this story will unfold but I can’t wait to see the ending!  I can’t wait to see what God has in store for my sweet Austin and see how He will use Austin’s life to minister to others.  Because in the end I know that God will get all of the glory!


  1. Sweet Jeannine,

    I am sitting here with tears streaming down my face. You are the strongest woman I know and I can only pray for all of you and pray hard for a cure.

  2. Jeannine - We love your sweet family and love Austin, my kiddos talk about him all the time, they love Austin and Michael and baby Luke! Thank you for sharing and your honesty.

  3. Jeannine, I cant imagine having taken this journey with either of my kids. I have had my own journeys with Mason as you know, though it is different. I look at you and I am inspired at the kind of wife, mother and ggodly woman I can and should be. Thank you for sharing your journey with us. You are an amazing example and inspiration to me, thank you!

  4. Jeannine, I'm crying my eyes out and I'm just so moved! You are such an inspiration to me. You just have no idea! Thank you for sharing this story and allowing God to use you to encourage others.