Nothing Wasted

It was his shoes that first caught my eye. They were the light-up-when-you-walk kind of shoes and they looked very similar to a pair of shoes that my own little boy has.  Except, this little boy’s shoes weren’t lighting up. Both of his feet were fixed in a special kind of stroller and I quickly noted the braces coming up from his shoes and wrapping around his little legs. He was sort of laid back in his special chair and his momma was very busy about making sure he was positioned correctly and that he was comfortable.

I noticed how she very rarely looked up to make eye contact with the many people staring at her son. Instead, she just busied herself with him, though he seemed pretty content and comfortable. I felt a tug at my heart. I knew this scenario all too well. I wasn’t sure exactly what their story was, but I know what it is like to have a child with a disability and to have strangers stare and make comments.

The announcement was made for all pre-boarding passengers to begin boarding the plane.  This momma very carefully moved forward with her son in tow, and the rest of us pre-boarding passengers followed behind.  

I had prayed very specific prayers for my trip. If I was going to be traveling and giving up time with my precious family, then I wanted to be sure to make every moment count and for nothing to be wasted.  I had prayed specifically for whoever I might sit beside on the plane…not just because they had to sit beside me, but I prayed that there would be purpose in our meeting. I had prayed that I would sit beside others who I could learn something from or maybe others that I could pour into, encourage, or pray for.  Nothing wasted.

As I boarded the plane, I saw this mom and her son situated in their seats. I knew. I just knew that I was supposed to sit next to them.  I took my seat on the aisle and almost simultaneously, the momma shifted in her seat so as to block me from her son who was propped up next to the window. Protection: I recognized this gesture very well.

I wanted so badly to put her at ease. I wanted so badly to let her know that I was no stranger to this. I was so excited, literally bubbling over because all I could think was “Thank you Lord! Nothing wasted!” At the same time, I knew I couldn’t push. I knew I needed to give it some time. I knew that if I came out with “I am so excited to sit with you! Don’t you worry! I have a special needs child too! Did you know that I asked God for the opportunity to sit with you?! Nothing wasted!” …well, she would just think I was plumb crazy. So I waited.

About ten minutes into the flight the little boy began to whimper ever so slightly. His momma struggled to get his bag from the overhead compartment to get him a snack out. About this time, our stewardess whirled by and fussed at her harshly because passengers were not to be out of their seats. The momma began to explain that her son had just had spinal surgery, they were headed home, and he needed something to eat. The stewardess shrugged and walked off in a huff.  Frazzled. This momma became frazzled and understandably so. She fumbled with the snack trying to calm her son and get him something to eat…but she just didn’t have enough hands to do it all.

“Can I help?” I asked.  The momma politely said “no” but when the snack began falling on the floor and the little boy kept sliding down in his seat, she handed me his cup. Her eyes were misting as she said “some people are not very understanding.”  “No, they’re not. I’m so sorry,” I replied.

Finally, we began to talk. I learned that the little boy’s name was Peter. He was four years old, just like my little boy. Peter has a disease that is quickly causing his body to deteriorate.

I was also able to share with this momma about my two children and about the fact that my son, Ezra, has Autism. I literally watched this women transform from protective to relieved as we shared some common ground with one another.

We talked therapy, disability insurance, schools, and surgeries. (This is what we special needs parents do.) We talked every-day life, what it is like for the siblings of a special needs child, and we even talked about our dream vacation destinations.  My new friend had let down her guard. She was warm and easy to talk to.  She was very real and it was refreshing to visit with someone who understood “life” as we know it.

Then, I asked a question. I knew this question might shake things up a bit to ask, but I was willing to try.  “Does your family go to church anywhere?” I asked. I instantly watched the warmth be sucked right out of this momma and sadness was left in its place. “Our family isn’t welcome at any of the churches we’ve been to,” she said in a quivering voice. She went on to explain that many churches in their small community aren’t even wheelchair accessible, which immediately rules them out as options for her son to be able to attend church with his family. She continued explaining that the other churches their family of four had attempted to visit, met Peter with sharp glances, stressed out nursery workers, and even declarations of “we just can’t help your son here.” As this precious momma shared, I could watch a bitterness rise up in her; understandably so.

I wanted her story to not be true.  But I knew better. As she shared about one bad experience after another of all their family’s attempts to find a church that would accept them and their special needs child, memories of my own family’s experience visiting churches flashed through my mind.

I remember the dirty looks and stares. I remember the inconvenienced attitude of the nursery workers. I remember the panicked look on one of the volunteers face when she saw my child struggling into church one Sunday morning and she worriedly declared “Oh, Ezra’s here.” And I even remember the church-going man who was sure to let my husband know that he believes our son’s Autism is a result of sin in our (Ezra’s parents) life. No, many churches are not kind or welcoming to families like ours. I know this to be a very harsh and true reality.

Peter’s momma went on to explain that, although they very much would like to go to church, when they are having to fight for Peter to get a good education, fight for the doctors to give him the attention he needs, and fight for the insurance companies to cover all of his surgeries, the desire to fight for a church to welcome him had been long since lost.

Fighting is a way of life for special needs parents. How sad that (many times) we must fight for a place for our children in God’s house. The fact of the matter is, not too many parents of special needs children have enough fight left in them to try to find a church that might welcome the needs of their precious family.

Peter’s momma and I visited more. I was able to pray for Peter’s little body to heal and for his family. His momma prayed for me as well. It was a sweet time. I was so thankful to have met Peter and Peter’s momma. I hope that in some way she felt encouraged and not so alone on our big plane. I know I did.  Thank you, Lord. Nothing wasted. When our plane touched down, we went our separate ways. Peter was ready to be home where his daddy and little sister were waiting for him.

As I waited in the airport for my connecting flight, I thought about my visit with Peter’s momma. I thought about the sad fall in her countenance at the mere mention of church. It wasn’t that she had had a look of anger or hate, but rather a look of defeat. This should not be.

Church, we have an opportunity. Not a little opportunity, but a huge opportunity that beats in step with the very heart of God. We have an opportunity to welcome those who are often times cast aside by society. We have an opportunity to love those who are not always shown love by the rest of the world. We have an opportunity to take the fight out of life for just a moment, for those who must fight every single day of their life.

It all boils down to this: What kind of church are you? Are you a church that has fallen into the belief that everything must look pristine, rehearsed, and without flaw? Do you only welcome those who might bring something to the table? Are you more excited about a doctor joining your attendance than a person from the homeless shelter or maybe someone in a wheelchair? May I challenge you that church was never meant to be this way?

God’s love is all encompassing. He loves all of His children regardless of ability, disability, social status, or size of our wallets. He welcomes all of His children with open arms. Oh Church, that we would imitate the heart of Christ! Oh, that we would desire to do real-life with one another. When we do real-life, things get messy.  So, I pray for messy churches. I pray for churches that are willing to get into the trenches of life with the children of God. All of His children.

Our family is so thankful to have found a church that welcomes us and our son with open arms. Such churches do exist. Our church doesn’t have the latest and greatest equipment for special needs; it has a lot of opportunities for growth in this area. What it does have is a heart and developing awareness for special needs children. For a family like mine, this means the world to us.

Somewhere out there is a little boy named Peter.  Peter’s body is frail and his family has a lot on their plates. This family has a need. They have a need to be loved and accepted. They have a need to not be so very alone. There are countless others who may look different, act different, smell different, or even dress different, but they all have one thing in common: Their Creator, God the Father, loves them. He believes they have great value. He created them exactly the way they are for a purpose.

We have an opportunity, Church, to try our hardest to create a place of refuge for ALL to learn about the great love of our Heavenly Father. We have an opportunity, Church, to love deeply and to be the Bride of Christ we are called to be. We have an opportunity, Church, to leave nothing wasted. Nothing Wasted.

“This is my commandment, that you love one another as I have loved you.”        

John 15:12

Perspective from 20,000 feet off the ground. Nothing wasted.

Perspective from 20,000 feet off the ground. Nothing wasted.

No Greater Love

I became a Christian at the age of twelve. I was a very broken little girl who came from a very broken past. The Lord became my Heavenly Father, my shelter, and my peace. Jesus became my all in all and filled up all those broken places in my little girl heart. His unconditional love for me boggled my mind then and it still does today. I praise the Lord that I am redeemed by the blood of the Lamb! There is no greater love than the love the Lord has for you and for me.

I have stood in amazement at the Lord’s unfailing love for his children for a very long time. Then, I had my first child, and the Lord’s love for me took on a whole new meaning. As a new parent, I gained a whole new perspective of what it means to love someone unconditionally. I held my sweet little girl in my arms and a love welled up inside of me, deeper than I ever thought possible. I held each of her tiny little fingers, kissed her toes, memorized each tiny freckle, and marveled at the beauty of my little girl. I can remember thinking This must be how the Lord looks at each of us, His children. This is how precious each of us are to Him.  Just as I have pursued my little girl with my love, cheered over her accomplishments, and cried over her hurts, so the Lord does for each of us. It is by no merit of our own, but because He is our loving Heavenly Father who loves us unconditionally.

Then, I had my second child. Again, the amazement of how deep a parent’s love can run overwhelmed me. I held each tiny finger, kissed his toes, memorized each tiny freckle, and marveled at the beauty of my precious little boy.  Not much time passed before we realized that our sweet boy was struggling. I have shared before many of the details of Ezra’s diagnosis and the long journey of our discovering that he has Autism, so I will spare you those details for today. But as Ezra’s life story unfolds, the Lord continues to reveal Himself to me in ways that take my breath away. Having a child with Autism has even further taught me about what it means to love deeply, passionately, and unconditionally. Having a child with Autism has even further taught me about my Heavenly Father’s love and the way that He pursues His children.

You see, the love I have for my special needs child is a pursuing love. There is a driving force inside of me that causes me to consistently pursue my precious little boy with a deep kind of love. This must be so, because often times my love is not received or accepted by him…So I wait. And try again. And again.

Do you know what it is like to have your child spit in your face? Do you know how it feels to have his precious tiny hands shove you away? It is heartbreaking. It hurts my heart much more than my body when he becomes aggressive and tries to hit me. But my love for him is a deep love. It is deeper than any wound.

When he hides from me in tiny, dark corners, it takes all that I have not to drag him out of his hiding place and hold him tight in my arms. When he covers his face with his hands and turns his head from me, it grieves my heart because I want so badly for my child to look me in the eyes. My love for him is a jealous kind of love; my desire is to have a relationship with him. But my love for him is also a patient kind of love, so I wait for him instead.

Can you imagine the joy that floods my soul when he allows his eyes to meet mine? Can I tell you how my heart swells when he snuggles me or gives me kisses? Or when he notices me? I am overjoyed when he is able to overcome obstacles. I rejoice in his accomplishments. I take such pleasure in discovering each little piece of his personality as he allows it to be shown. Oh how I love my little boy! My love for him is an unconditional love.

How much greater is the Father’s love for each of us! Since I have had Ezra, the love of my Heavenly Father has become more and more real to me.

How many times have I spit in my Heavenly Father’s face? How many times have I shoved Him away? How many times have I become angry with Him for things I do not understand? How many times have I wounded Him with my words? But His love for me is a deep love. It is deeper than any wound-even death on the cross.

When I hide from the Lord in tiny, dark corners, He calls my name. He never loses sight of me. How it must grieve His heart when I turn my face away from him. How he yearns for me to have a relationship with Him. His love for me is a jealous kind of love. But His love for me is also a patient kind of love, so he waits. He waits as long as it takes because I am His child.

Oh the joy He has when I call on His name! When I notice Him! He is overjoyed when I am able to overcome obstacles. He rejoices in my accomplishments. Oh how He loves me! His love for me is unconditional. His love for you is unconditional too.

Friends, there is no greater love than our Heavenly Father’s love for us, His children. It is a pursuing kind of love. It doesn't matter how far you have strayed, how ugly the condition of your heart, how many times you have spit in His face, He loves you unconditionally.

I praise the Lord for the awesome way He uses my little boy’s life to encourage me, and reveal Himself to me. I hope you are encouraged as I am. I hope you are able to experience the unconditional love of our Heavenly Father. There is no greater love!

"How great is the love the Father has lavished on us, that we should be called the children of God." 1 John 3:1

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Reading a Thomas the Train book...sort of! At least I got some snuggles!

One Hour and Fifteen Minutes

I don’t even care that today’s blog picture gives everyone a front row view of my double chin and big ol nostrils… Check out who’s sleeping in his momma’s arms! That’s right, it’s Ezra!

This past Monday, time stood still for one hour and fifteen minutes. For one hour and fifteen minutes, I barely breathed for fear of waking my baby and losing this precious moment that we had not shared in such a very long time. For one hour and fifteen minutes, I held my sleeping boy in my arms and prayed over him as I felt his little body slowly breathe in and out. He was relaxed, he had such a peaceful look on his face, he was comfortable, and he was in my arms. I cannot recall the last time my sweet boy fell asleep in my arms- it has been several years. Until this moment, I had not realized how hungry I was for this special kind of momma and baby connection with my little man.

Most children with Autism do not like to be touched and most do not like to snuggle. We are very blessed by the fact that our Ezra is a very affectionate little boy. Despite his Autism and Sensory Disorder, Ezra will give kisses and hugs to those he is very close to. Ezra likes to be tickled and he loves to share the rocking chair at home with his big sister. However, Ezra’s affections are always on his terms. If he is struggling on a particular day, he may or may not even acknowledge me let alone give me loves. The key is to always make yourself available and to wait patiently for him to come to you. This can be very hard as a parent. Often times my attempts to snuggle are met with him spitting in my face, screaming, ignoring, or pushing away. There is nothing more heartbreaking than feeling your child’s little hands pushing you away from them when you want so badly to be able to offer comfort and love.

 So, you learn to wait. You learn to wait and when your child comes to you, everything else gets put on hold. Suddenly, the task at hand is trivial in the light of whatever breakthrough occurred for your child to pursue you. You soak it up. You store this precious moment in your memory and hold on to it tightly, because you don’t know how long it might be until a moment like this will happen again.

That’s how I felt this past Monday. If you have read my blog post Talk About Us Behind Our Backs, then you know that Monday is the hardest day out of our week. Every Monday afternoon Ezra and I wait while Grace is at dance.  This past Monday, as we pulled up to the dance studio, I could tell that sitting in a waiting room for any length of time was not going to be successful. Ezra was tired and he was letting me know about it. So, we walked Grace in to dance and went back to the car. I set Ezra in my lap, turned on some light music, and said a prayer because I just knew that this was going to be a rough hour and fifteen minutes. As the music played, my sweet boy grew calm and still as he laid his head against my chest. Within a matter of minutes, he was snuggled into me and was in a deep sleep.

I’m not going to lie, I cried. I sat there in amazement as I thanked the Lord over and over for such a sweet moment. I had had a long day. I was weary. It was as if the Lord knew exactly what I needed. I was able to kiss the top of Ezra’s sweet little head and hold him tight for one hour and fifteen minutes! What a special moment! What a blessing! The Lord knows the deepest desires of our hearts. I am so thankful.

…and yes, I just HAD to capture the moment by taking a picture with my phone. If you are wondering why I did not smile for such a special picture, it is because I was literally petrified to move too much for fear of waking Ezra. I just knew he would sense me flexing my facial muscles and it would all be over. Therefore, you get the double-chin-and-up-the-nose view …super. Oh, but isn't he a sweetheart! Thank you Lord, for the gift of one hour and fifteen minutes!

Never take for granted your child's hugs and kisses. Never take for granted hearing their little voice calling "Momma Momma" over and over again. Sometimes we become numb to these things...maybe even agitated at times. Oh friends, cherish these moments! They are treasures we are not always guaranteed. They are precious gifts!

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Thirsty

 

Jesus has a history of using those who most would consider “unusable” or “less likely to succeed”. I love that about my Jesus. He creates everyone with purpose and all of us have the opportunity to be used by Him to do great and wonderful things- even a child who has Autism.

I would spend a very long time if I were to list all the many ways that the Lord has used Ezra (my little boy who has Autism) in my life and in the life of our family. The Lord uses Ezra to constantly teach me things about love, life, and priorities. Because of Ezra, and the Lord allowing him to have Autism, my faith has grown stronger and I have learned in a very real way what it means to lean on the Lord completely as my source of strength. The Lord is always teaching me things through the life of my special needs child.

Last Saturday was no exception. Our family was scrambling to get out the door. Jake was going to help and friend with some yard work, Grace was going to a birthday party, Ezra was going to his “Lolly’s” house to play, and I was the chauffeur for the day. As we all hurried to get ready for our busy Saturday morning, I noticed that Ezra was struggling with something. I had made him juice that morning inside the blue Sippy cup with faded pictures on the side of it. (Something you should know about my little man is that he is VERY particular about the kind of cup he drinks out of. He can be so extremely thirsty, but if the drink is inside of a cup that is different, has a different kind of lid than what he is used to, or has a design that he is unfamiliar with, he will have a strong aversion for it to the point of not being able to drink, despite his extreme thirst. Yes, this is just all part of Autism) I gave Ezra this reject, faded Sippy because, well, that’s the only one that was clean (Maybe he won’t notice, right?).

So, on the coffee table this cup of juice sat, as I watched my little boy pace back and forth, trying to decide if he could bring himself to drink from this faded cup. I watched as he ran to the kitchen and brought out a couple of water bottles. He tried to open them and gave up quickly. He ran back to the cup of juice and stared at it for a while. He could not bring himself to drink.  He was becoming frustrated.  Next, he saw his sister’s cup. He immediately ran over and took a big gulp of her drink, but it was milk and he doesn’t really like milk, so he threw the cup down and began to cry. Then, it was back to the water bottles, but after a short time, he had given up again. Now he was in tears even though he knew exactly where he could get the drink he so desired. He just could not do it.

I went to the kitchen and began to wash a more “Ezra approved” cup so that my upset and thirsty little boy could have a drink. As I was washing this cup, I had a little check in my spirit. I do this too! So many times I am thirsty. I am thirsty for love, thirsty for acceptance, thirsty for peace, and thirsty for fulfillment. I busily rush around trying to “drink” from different people, places, and things that might fill me up and satisfy the desires of my heart.  All the while, Jesus is there offering me that love, acceptance, peace, and fulfillment that I so desire to have.  Just like Ezra’s juice cup, I know the Lord is there and I know what He has to offer. Why in the world is it then that I seem to run to Him as a last resort; when I am parched and exhausted from trying to “drink” from the world and what it has to offer?

I handed Ezra the “approved” juice cup. He drank and drank and drank. He was a thirsty little guy! Maybe someday we will help Ezra to be able to drink from various cups. For now, that’s just not on our radar. We have more important things to worry about like talking, playing appropriately, self-feeding, walking appropriately, etc.

As for me, I am so thankful that the Lord uses my sweet boy to teach me and to remind me of my need for time spent with my Heavenly Father. He fills my cup! I need to spend a lot less time running from one source to the other, looking for fulfillment. The Lord is my all in all. He is my source of strength. He fills me up!

Thank you Lord, for the great many ways that you use my sweet boy to draw me nearer to You. Thank you that You alone offer lasting and unconditional love, acceptance, peace, and fulfillment. May I drink deeply!

 “Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.”    - John 7:38

 

Love in a Different Language

Love is…

Love is expressed in many different ways in our home. One of the very most important things to me is for both of our children to know how much we love them. It has not taken us long to realize that having a child with Autism means you have to think outside of the box sometimes…even when showing love. Sometimes you truly do have to learn Love in a Different Language.

Here are just a few ways we have learned to show love to our sweet boy…

1.      Love is- acknowledging his presence. We talk to Ezra just as if he were answering us back in complete sentences. We ask him how is day was at school and tell him how much we missed him while he was gone. He may not even be able to make eye contact…but I think he hears us and he knows when we don’t acknowledge him.

2.      Love is- spending hours sitting in the bathtub…with no water…in your clothes….just sitting…..just because. For some reason the bathtub is one of Ezra’s happy places. I think he likes it because it is an enclosed “snug” place. For whatever reason, Ezra is quite content to sit in the tub for long periods of time and instead of just letting him to it- we sit right there with him. I figure we might as well join in on some of the “quirky” things he likes to do instead of just leaving him in his own little world.

3.      Love is- singing the same songs or watching the same shows over and over and over again. If that’s what will bring a smile to my little man’s face, we are gonna rock that Veggie Tales CD till it won’t play anymore!

4.      Love is- accepting him and loving him for who he is right now…not who or what he may become later. There will always be a new great therapy that makes great promises for my child and his future. While I do strive to get Ezra all the help he might need, I want to always be sure to love him right where he is at. He may or may not develop some great talent or strength in a certain area, and that’s ok. I think he is pretty great just the way he is!

5.      Love is- displaying patience even when patience is running thin. There are days that are just hard. Very hard. I never want Ezra to feel as though I have lost my patience and am throwing in the towel for the moment. I firmly believe he can tell when I have started to lose my cool. When patience runs low, dig a little deeper.

6.      Love is- big bear hugs and letting Ezra run his fingers through my hair (even Oreo fingers J ).  Ezra shows love by unusually tight hugs and loves. He also loves for me to place my head in his lap while he runs his little fingers through my hair. I usually end up with punk-rocker style hair but it makes my boy happy and it fills my heart!

7.      Love is- driving around in the car just because your usually non-verbal child said “let’s go!”  So, you drive…and drive…and drive…and….

8.      Love is- Singing “The Ants Go Marching” at the top of your lungs, no matter where you are or who is watching, just to bring a smile to your child’s face. Really, you should try it! You will get some great looks from people!

9.      Love is- Ezra’s big sister driving him in her Power wheel’s car until the battery dies…because it make her baby brother smile. Even though she does not fully grasp Ezra’s disability, it is so important to her to make him feel included and to make him happy.

10.  Love is- never giving up. Ever. No matter what.

I am so very thankful the Lord has entrusted Ezra to me. I am so very thankful for the opportunity to learn how to Love in a Different Language!