To the Warrior Parents

IMG_5150.jpg

You get tired of the fight, don’t you? The constant that is our lives. For all the articles written about how special needs parents should make time and care for themselves, you’d think the world would realize that these are luxuries we special needs parents often cannot afford. We are set to the tumultuous beat of the world’s drum that dictates a never-ending battle for our children. And if we skip a beat, it feels as if the system is poised so that everything you’ve worked so hard to put in place for your child comes tumbling down; then we must start over again. Fighting. Pushing. Trying. Praying. It is not a fight for the “extra” in life, for privilege or preference. On the contrary, we are in a fight for our child’s basic needs: equal education, the ability to communicate, medical equipment, health coverage, to become functioning members of society, and on and on the list goes.

To the warrior parents who have children with special needs… Don’t allow the fight to consume you. Lamentations 3:22-23 says, “Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” The fight can be exhausting can’t it? The battle of the mind is as real as the physical battles we special needs parents face day to day. Discouragement sets in. We begin to wonder if anyone else cares about these giants we daily face on behalf of our children, who are oftentimes unable to fight for themselves. In the midst of it all, dear parents, do not forget that God sees you and that “his compassions never fail.” Great is His faithfulness to never leave us. When we find ourselves overwhelmed from the fight, we must fix our eye on Jesus.

To the warrior parents who have children with special needs… Don’t lose your fight. There is a careful balance we must find between ensuring our child is given every opportunity to reach their greatest potential (whatever level that may be), and just being so battle weary that we allow the fight to overtake us. Psalm 127:3 says, “Children are a heritage from the Lord, offspring are a reward from him.” Parents, do not forget that our children are a reward from God, entrusted to us. In our weakest, most exasperated moments, we must remember this and continue to persevere in making a way for them. I know how easy it is to become worn. Don’t give up. Fill out the paperwork for the one hundredth time, reapply for services again, meet with the teacher, ask the questions, and speak up for the child who has no voice. Our children are worth it; they are our greatest treasures.

To the warrior parents who have children with special needs… Don’t lose your hope. As a parent of a child who has special needs, we must have a double dose of hope; hope enough for ourselves and hope enough for our children. In a world where “awareness” is lacking in action and our children may seem to be falling through the cracks, a hope big enough to sustain can only be found in Jesus Christ. Psalm 121 says, “I lift my eyes to the mountains- where does my help come from? My help comes from the Lord, the Maker of heaven and earth.” Parents, lift your weary heads and set your sights on Jesus. He is where our strength comes from as we daily fight to make a place for our children. He is the maker of heaven and earth and is fully able to see us through – to give us hope for ourselves, hope for our children, and hope for the future. Even more, he loves us and our children with a love far greater than we could ever comprehend. We can trust Him.

First posted by my partners at Joni and Friends and Irresistible Church

http://irresistiblechurch.org/warrior-parents/

 

Loving From Afar: A New Perspective on Christmas

I sat on my couch, just inches away from my little boy who was playing with his trains on the coffee table. We had been home from school for at least four hours and he had yet to make eye contact with me, touch me, or acknowledge my presence in any way. So there I sat, just inches apart from my little one. I so wanted to scoop him up and snuggle him, to kiss his precious face all over, or to tell him how much I had missed him while he had been at school that day. But I know better.  I know that in moments like these, he needs silence and to not be touched. That’s just the nature of this thing called Autism.

So, I sat. I watched him play with loving pride swelling up inside of me. He’s so beautiful, such a precious soul, a most wonderful blessing, and treasured gift. It takes an unbelievable amount of self-control for the mother of a child with Autism to learn to love from afar. Often times, that’s exactly what I must do.  

I began to think of another of another parent who had to love from afar. The thought had never crossed my mind before.

I have heard beautiful songs and sermons written about Mary and the beautiful perspective of the young virgin mother of Jesus Christ. What a huge responsibility. What fear and excitement she must have felt. What joy must have flooded her soul as she cradled her baby boy in her arms knowing that He was the Messiah, the Son of God.

I have listened to stories about Joseph, the young carpenter man.  What an exercise of faith it must have been to take Mary at her word and to take her as his bride. What must it have felt like to have been chosen to father the Savior of the world? I’m certain he found his heart overwhelmed at times as he found himself plunged into the very middle of God’s story of redemption.

I have even listened to accounts of the spiritual battle between heaven and hell on that not-so-silent-night. While angels sang “Glory”, all of hell shuddered at the birth of the New Born King. Never before had the birth of a child brought forth such a commotion as the countdown to the cross and Christ’s victory over death came rushing into the world on that starry night in Bethlehem.

But what about God the Father? Certainly, it is His gift, the gift of His son Jesus that we celebrate each year. But I just wonder how He must have felt as He watched Jesus, His one and only Son, be birthed into this world. I wonder how His heart must have raced as He beheld that tiny babe lying in the manger. How His soul must have swelled with all the joy, love, admiration, and awe that a parent feels at the sight of their newborn child. Was there a collision of emotion as He watched Immanuel, knowing what the birth of His child meant for the world and what this sin cursed world meant for the life of His child?

As God the Father watched from His heavenly throne, with all the delight that fills a new parent, did He long to hold His precious Son? To kiss His soft cheeks? To hold His tiny hand? Friends, the Lord is capable of the most complete and unconditional love. Therefore, I can only imagine the love He felt for His Son, Jesus. As God the Father shared His Son with the rest of the world, as He made the ultimate sacrifice for you and for me, He chose to love His baby boy from afar as Jesus was wrapped in clothes and placed in a manger.

This thought struck me as I sat watching my own sweet boy who was busy playing with his trains; as I was loving him from afar.

 How thankful I am that Christ does not ask us to conquer temptations without having been tempted Himself. How thankful I am that we do not experience the shame of sin and guilt without Jesus having borne the sins of the world and fully understanding the weight of which it carries. How thankful I am that we do not experience the deep pain of losing a loved one without God the Father knowing what it is like to have His one and only Son sacrificed for all of mankind.  He has walked our roads, feels our pains, knows our joys, and understands our struggles. God has never withheld Himself from our everyday circumstances but rather He willingly thrusts Himself into our world with all understanding and compassion.

As I sat there loving my child from afar, I felt a peace come over me. I am so thankful that I can come to God with the longings of my heart. When I long to touch my son, long to hold him, long to kiss him, long to hold his tiny hand, but instead must muster up all the strength that is within me to withhold these gifts that are so precious for a mother to bestow upon her child, I turn to Christ.  And in a way, I wondered if just maybe the Lord understands what it must be like to love your child from afar.

Whatever your Christmas may look like this year, whatever you are facing, whatever turn your life has taken this year, may I encourage you that God is so very near. He is Immanuel, God with Us and He cares for you!

Merry Christmas!

Merry Christmas from our family to yours!

Merry Christmas from our family to yours!

A New Year and a New Thing!

IMG_3867.jpg

Do you dare to trust that God is going to do a new thing in 2018? Now is the time of year when everyone makes resolutions, new promises, and sets their expectations on the future. But what about us? What about the parents of a special needs child? Many times, we grow stagnant in our hope that God might have new and exciting things planned for our child with special needs. The world beats us down, and we find ourselves barely crawling into the new year. Our day-to-day life can be so tedious that somehow, we miss the reality that God wants to do a new thing in our lives and in the life of our special needs child as well. Dear parent, do not lose your hope. 

Trust that God Can Reveal a New Thing: Our God is a God who pursues a relationship with His people. He so desires a personal relationship with us and wants us to experience His power in our lives. He wants us to allow His Holy Spirit to fall fresh on us and for us to grow in our knowledge of Him. Our special needs children are not excluded from Gods desire to meet with His children. Let us pray and trust that God will pursue the heart of our child and will reveal Himself in ways that only He can. 

Trust that God Will Allow New Things: Sometimes, we grow weary in our never-ending attempt to help our special needs child achieve new things. The extremely exhausting road of fighting for your child’s needs and trying to find those who just might give your child a chance can leave you feeling very lonely. This year, let’s commit to not losing hope. Let’s keep pushing, keep trying, keep cheering, and keep believing that God will allow new strengths to be developed. 

Trust that God Wants a New Thing: Our God is not a past-tense God. He is ever present and always working. As you begin a new year, trust that God wants to use you and your special needs child in new ways. It’s time to be transparent—help others to understand this journey you’re on. It’s time to be daring—do not become so overwhelmed by the limitations the world has placed on your child that you give up. It’s time to press on—set new goals for yourself and your child. Many special needs parents feel so bogged down by the “can’t” that we lose sight of the “could.” Please don’t quit, let’s believe that God can do a new thing in the life of our children. 

As you look forward to this new year, I pray you find peace in knowing that God can make “a way in the wilderness and streams in the wasteland.” No situation is without hope. No child escapes His view. No disability is too great. He sees each of us in our struggles and declares that He can do a new thing! 

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 (NIV)

First Published by my partners at Joni and Friends and Irresistible Church http://irresistiblechurch.org/new-year-new-thing/

Parenting with Grace

I have a confession to make. I parent with a tremendous amount of grace. Not in a “oh-look-how-gracefully-she-parents-her-children” type of way. No, I mean I am constantly asking the Lord for grace to try again, thanking Him that tomorrow is another day, and full of gratefulness that my children are also generally forgiving and fairly resilient. 

This parenting gig is no joke. The older I get and the more life throws our direction I realize that most of us parents don’t really know exactly what we are doing. We can arm ourselves with God’s Word, stand on His promises, ask for wisdom and discernment… and yet, many times it still feels like we are shooting from the hip. These tiny little humans that the Lord entrusted to us didn’t come with manuals. So sometimes in our weaker moments we are left feeling ill-equipped and do a whole lot of praying that we don’t mess this whole thing up. Can I tell you something? You can multiply this feeling by a thousand for the parent of a child with special needs. 

We’ve got one shot at parenting, and we don’t want to mess it up. As parents of a child with special needs, we find ourselves in the very unique position of being our child’s medical coordinator, educational advocate, therapy coordinator, records keeper, and insurance protector. We work hard to make a way for our children and to try to give them every opportunity to reach their highest potential. In a world where “raising awareness” has become more about the t-shirt, ice bucket, or bumper sticker than about true heart change and acceptance, we find ourselves grasping for ways to make a place for our children. Compile this with everyday things like having a job, being a wife and mother, and parenting other children besides your child with special needs, and shooting from the hip quickly becomes an understatement. There. Is. No. Manual. For. This. 

Having a child with disabilities is a tricky little dance. It’s two steps forward and two steps back. Many times, as we delight in our son’s newfound accomplishments, we see an old one slip away. It’s easy to get caught up in the daunting task of grappling with what has been gained and what has been lost. We are trying desperately just to communicate with our child and to make sure he knows he is loved. Most parents of children with special needs function on about three to four hours of sleep because disabilities like autism have no time zone. Our emotions run high and our energy low. This is the perfect recipe for imperfect parenting and the need for grace. 

Dear Parents, I hope you will remember that we can parent with grace. I’m finding more and more in this role of a special needs parent, that if I just offer up all I have and as much as I can, the Lord will cover all my imperfections with His grace. 

I’m willing to bet that we all get a little snippy, lose our cool, throw patience out the window, burn dinner, miss the appointment, and wonder what-in-the-world we are doing. I’m also willing to bet that the deeper issues we occasionally struggle with are not foreign to fellow parents who walk this journey with us. So, breathe deep and let yourself rest just a little knowing that you are not alone and that in all our inadequacies, God’s grace is sufficient. 

There is such a thing as imperfect progress. Thank the Lord! 

“My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9 (ESV)

First published at Irresistible Church

http://irresistiblechurch.org/parenting-grace/

 

When Words Are Few And Tears Are Many: The Heart Cries Of A Special Needs Parent

The ache was so deep and the pain so raw, that I could not utter a word. There I was, on my knees in desperation, poised to cry out to Jesus. But trying to sift through the emotions that flooded my heart only rendered me more speechless.

It was too much. I had no words.

There in our tiny living room I knelt, eyes closed, as I imagined myself at the feet of Jesus. And even though I had no words, even though the hurt of our circumstance had overwhelmed me, I continued to kneel there weeping.

I was doing business with Jesus. No words necessary.

In our culture, we place a great deal of value on words. Sometimes our palms begin to sweat as we are asked to offer up a prayer in front of a crowd. We try so hard to say the right things. Sometimes we worry about sounding “spiritual” enough.

But God has never been a God of many words. He is a God of the heart. He has the sovereign ability to look past our inadequate words, and even past our weeping, as He peels back the curtains of our heart to reveal our true selves.

So, when words are few and tears are many, He sees your heart.

As I knelt on my living room floor, pouring out the heart cries of a special needs parent at the foot of my Savior on behalf of my son, no words were necessary. The Lord promises that even when our words fail us, His Holy Spirit intercedes for us.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”  Romans 8:26 NIV

The truth is, I was feeling helpless. I was trying so hard to make a way for my son.  I was overwhelmed by the lack of understanding the world seems to have for a little boy like mine. It seemed as though even the very people who were supposed to be advocating for the success of our child just didn’t quite get it. Is there really no place for a seven-year-old, blue-eyed, wide-smiled, precious little boy who happens to have autism? I was hurt for him. And there is no other hurt like a momma’s hurt for her baby.

Although I can now quite accurately articulate the thoughts and feelings I was having that day, at the time I was left with nothing more than sobs. Sobs at the feet of Jesus. But there was no need to articulate anything because the Lord already knew.  

Dear friend, is there something burdening your heart? Maybe your words are few and your tears are many as you carry the weight of your child’s disability, or fight for your marriage, or strive to make ends meet.

Whatever the circumstance, run to the Father. No words are necessary. His Holy Spirit intercedes for you. You need only come to Jesus with your heart, He will refresh and restore your soul. He longs to exchange our grief for His grace, our burdens for His blessings, and our tears for His triumphant plan.

First Published at Irresistible Church http://irresistiblechurch.org/words-tears-many-heart-cries-special-needs-parent/

 

From One Special Needs Parent To Another: Don't Give Up

Dear Parent,

I know how easy it is to feel like you are all alone in this, but you’re not. While your child’s special needs may be different from mine, we are on a very similar journey. I want to encourage you with three words. Simple though they may be, these three words are so important for the task the Lord has given to us. The Lord has entrusted you and I with the life of a child who has special needs. So, no matter how ill-equipped you may feel, no matter the severity of the disability, no matter how weary you have become, let these three words spur you on as you care for your child. From one special needs parent to another: Don’t Give Up.

I know your weariness. I know how you sleep with one eye open and one ear listening throughout the night, just in case. I know how you wake in the wee hours of the morning to change soiled bedsheets and to wash your precious child. I know that often times coffee and a prayer is what keeps you going all day. Don’t Give Up.

I know your discouragement. I know that no matter how many times you give yourself a pep talk, you will find yourself comparing your child’s development to other children their age. I know that for every milestone achieved, it seems there are a million more standing in the wings. Don’t Give Up.

I know your fears. I know you fear for the future of your child; wondering what level of independence they will have, their wellbeing, and what will happen to them when you are no longer around to make a way for them. I know you fear for your child’s education and whether the school budget or politics will limit their chance at having every opportunity for personal growth and success. Don’t Give Up.

I know your joys. I know that overwhelming sense of excitement when you watch your child achieve something for the first time. These are moments of pure joy that others might find hard to understand like when you feel as though you have just conquered the world because your child made eye contact with you for the first time. I know how one touch from your child can make all the days of struggle melt away in an instant. I know that little things are not so little in this life of ours. I know that those moments and milestones that bring us such joy are almost puzzling to the rest of the world. Don’t Give Up.

I know sometimes you might feel like giving up. As you fight and you push and you try your hardest to make a way for your child in this world, sometimes you become weary. Sometimes it seems like an uphill battle. Don’t Give Up. No matter how battle-weary you become, you must hold tight to this task the Lord has entrusted to you. Because no matter how ill-equipped you may feel at times, the Lord specifically chose and gifted you with this special child.

Let us pick ourselves up, dust ourselves off, and continue making a way for our children. Giving up should never be an option. Continue praying over your child, the Lord hears you. Continue those late nights and early mornings, the Lord is with you. Continue those therapy sessions and treatments, the Lord will provide. But most importantly, protect this gift that the Lord has entrusted to you and Don’t Give Up.

Psalm 127:3 “Children are a gift from the Lord; they are a reward from him.”

First posted at www.IrresistibleChurch.org 

Asking for the Healing of a Loved One: To Touch the Hem of His Robe

Have you ever prayed desperately for someone’s healing? I mean the cry-from-the-bottom-of-your-heart pleading with the Lord for deliverance, freedom, and healing.  After all, God is fully capable of full healing. Doesn’t he see this great need? Doesn’t he feel the heaviness of your cries as they fall one by one before his throne? I know you are able, Lord. Please, I am asking for healing. It’s as though, in the corner of your heart, you hold out hope that if you just plead hard enough, you might somehow will your loved one to healing. I know this desperation. I know this cry.

As I laid in bed next to my little boy, he wrapped his tiny arms around my neck and drew in me. He kissed my cheek with his baby-soft lips and then laid his head down on the pillow. I continued to hold him as tears filled my eyes and a rush of emotions filled my soul. It’s crazy how this Autism thing works. When my son has struggled through a particularly hard day, I am crushed. However, this day he had not struggled at all. In fact, he had made wonderful eye contact, had snuggled, and talked to me throughout the day. It was a beautiful day of clarity and freedom from the chains of Autism that so often bound him. It may be hard to believe, but sometimes the wonderful days break my heart almost as much as the hard days.

I had seen glimpses all day of the little man that he is. We had shared smiles and giggles. His bright personality had lit up the room. We had played together and he had spent part of his day in a tent with his sister making choo choo train noises. He was able, for the most part, to communicate his needs and wants. It had been a beautiful day. Now as I laid in his bed holding him, I felt so very grateful for the blessing of this day, but I was also overwhelmed with sadness. As the parent of a child with Autism, I fully know that just as a ray of sun will peek through the clouds and then go back into hiding, this bright day of clarity would not last. Tomorrow would be a new day and I would once again be left searching for the little boy I know is locked somewhere deep inside my sweet boy. This thought ached deep in my heart.

I pulled my son closer; as though I was trying to hold on to him as tightly as I wanted to hold on to this day. Please heal him, Lord. I know you can. Without even thinking, I closed my eyes and imagined reaching out just to touch the hem of Jesus’ robe. If I could just touch Him. If I could just hold my son in my arms and touch Jesus. Just touch the hem of His robe.

You know this story, don’t you? The bible tells a story in Luke 8 about a woman who was sick. She had been sick for many years with an illness that would have alienated her from society and caused her to feel miserable. And there was Jesus. He had just calmed a storm at sea, restored a demon possessed man, and He was on his way to heal a twelve year old girl who was dying. Yes, this woman knew who this “Jesus” was. I can almost feel her desperation. Jesus, this man who professed to be Messiah, this healer of so many, was passing through. In complete abandon, I imagine her rushing out her door, desperate to see this Jesus. I know you are able, Lord. Please, I ask for healing. As she approached Jesus the crowd pressed in on Him. Was this it? Would she get this close to healing and complete restoration just to lose Jesus in the crowd? With her heart pounding in her chest, she pushed through the masses and was able to squeeze her hand through a small break in the crowd. If I could just touch Him. If I could just touch Jesus. Just touch the hem of His robe. With twelve years of sickness behind her and the thought of an eternity of pain, exclusion, and embarrassment ahead of her, she reached out and grasped just the hem of Jesus’ robe. Healing. Complete healing. Trembling, she came before Jesus and He told her, “Your faith has healed you. Go in peace” (Luke 8:48).

Desperation. Faith. Healing.

So, as I held my little boy, desperation rose up inside of me. If I could just touch the hem of His robe. I know you are able, Lord. Please, I ask for healing.

It’s very rare that I ever ask God to “heal him from Autism” anymore. My prayers have shifted. I believe that some parts of Autism are a very special gift. My son sees the world in different ways than you or I could ever imagine. In many ways, Autism gives my son a unique and special gifting and personality that I would not ever want to lose. It’s the frustration, the inability to communicate, the aggression and impulsivity that I pray he would be released from.

I have seen the Lord work miracles. I have seen babies live who were said to have no chance. I have seen cancer disappear when the doctors have no medical explanation. Yes, He is in the business of miracles and He is able. So I reach out to Him, to touch the hem of His robe, to ask for healing. Maybe one day He will answer “Your faith has healed your son. Go in peace.”

I have great faith in a great God, but I also have faith that He is sovereign and that He may not have plans to heal my son. It takes an equal amount of faith to trust that God is capable of healing, as it does to trust that He is sovereign and may withhold healing for a greater purpose that we may never understand this side of heaven.

Until the Lord lays it on my heart to quit asking, I will plead for healing on behalf of my son. If I could just touch the hem of His robe. I know you are able, Lord. Please, I ask for healing. I will also not stop trusting that the Lord knows best and that His ways are perfect. I find myself in the in-between; between desperation and dependency, fear and faith, helplessness and hopefulness, tears and trust.

If you find yourself in the in-between, just like me, remember these things: Our prayers do not fall before an unable God or an empty throne. He hears you, so ask. Our prayers do not fall before a limited God. He is able, so trust. Our prayers fall before an all mighty, all powerful, all knowing God. He is sovereign, so have faith.  Have faith even if it means trading your hopes for His perfect plan.

On those days that you are weary from the fight, remember that the Lord is close to the brokenhearted (Psalm 34:18). When days come that you wish so badly you could hold on to for forever just to see them disappear, remember that His ways are higher than ours and that He is not a God of mistakes (Isaiah 55:8-9). We must have faith enough to touch the hem of His robe and faith enough to trust if He responds with a “not now” or a “not ever”. If you are praying for the healing of a loved one, I’m sending you a hug. You are not alone.

 

 

When You Feel Guilty For Talking About Your Life's Problems or Praises to The Parent Who Has a Child With Special Needs

You complain to me about work. You share with me about your child’s awards and accomplishments. You gripe about the lady who did your nails. You talk to me about money problems. You tell me about the plans for your next big family vacation. You worry about your kid’s grades. You share a personal prayer request. And then, you feel guilty for saying these things to me because I am the parent of a child who has special needs.

I know it’s true. I know it’s true because you all apologize to me. “I’m so sorry, I know my struggles are nothing compared to yours.” “I’m sorry, I shouldn’t burden you with these things. You have enough on your plate.” “Of course, I know this is nothing like what you are going through.” For as many real conversations I have with friends and family, I have probably received just as many apologies.

So, I am writing you dear friends, to set you free. I want to share with you exactly what I think about my life problems and your life problems, your life praises and my life praises, and why your feeling of guilt is unnecessary. I want you to know that we parents of special needs kiddos need you, and you need us too!

WE’VE GOT ISSUES AND SO DO YOU!

As I’m writing this, an old (revised) cheer is flitting through my head. “We’ve got issues, yes we do! We’ve got issues, how about you!?” But you guys, it’s the truth. We all have struggles.  Sure, some of my family’s struggles look different than other people’s because we have a child with special needs. But please remember this about us Special Needs Parents, we have jobs, some of us have other children, we have bills, we like to watch TV, we like to go shopping, we have interests, we have spouses who we love, we have spouses who sometimes drive us crazy, some of us are single parents, and ALL of us are just regular people like you. And, we’ve got regular-life issues; issues that have nothing to do with Speech Therapy, Disability Insurance, or Autism.

When a friend shares with me about her struggles, I do not feel resentment. The impression I get is that many of you think we Special Needs Parents are listening to you talk while we mentally calculate, “I can’t believe she is talking about this. This is nothing compared to my life and my problems.” Friends, nothing could be farther from the truth. When a friend confides in me, even if it is a struggle that I have not personally faced, it reminds me that others struggle too. There is a human bond of comradery. I so appreciate it when someone is real with me and does not feel that they need to somehow protect me from their life’s issues, because of my own. Yes, our family faces a unique set of hard struggles at times, but I am willing to bet that others of you are facing a unique set of struggles all your own. For lack of a better phrase, the struggle is real for all of us.

My fear is that you are holding back from us. My fear is that little by little we Special Needs Parents will become more and more isolated because others believe we have too much going on or too much on our plate. Believe it or not, in many ways, we are very much like you. We have not gotten so lost in a world of disability that we cannot see life outside of it.

So, let me free you from the guilt of sharing your struggles with us. Your sharing reminds us that we still have friendships. Your sharing reminds us that we are not alone in this thing called life. Your sharing makes us feel valued, because you came to us with a burden.

YOU’VE GOT PRAISES AND SO DO WE!

I would much rather measure life by the praises and not the problems. Wouldn’t you? I hope you have praises. I hope that you are able to see the fingerprints of God all over your life. I hope that you are able to watch the Lord, who gives every good and perfect gift (James 1:17), work in and through the very fabric of your everyday life. I hope you take time to celebrate the many blessings, accomplishments, and praises in your life, even in front of me.

I have actually had friends apologize to me for sharing about their child’s academic accomplishments. They thought they might be hurting my feelings because I have a child who has special needs. Again, nothing could be farther from the truth. In fact, it hurts so much more that anyone would ever feel that they need to hold back from sharing a praise, because we are Special Needs Parents.

You need to know that we Special Needs Parents are not watching you and measuring your many blessings against our “plight in life”. On the contrary, we wish for your success, we are happy for your children, we want you to enjoy your life, and we would love for you to share your praises with us. You also need to know that we Special Needs Parents have many praises of our own. We would love to share with you about our child’s many accomplishments. My son’s accomplishments may be different than your son’s, but the pride of a parent for their child is the same. You see, we are not so different.

The truth is, God has gifted each of us with our own lives and set of blessings. Comparison kills contentment, every time. Because we live in a culture that cultivates comparison, I can see how it would be easy for others to think that we Special Needs Parents feel uncomfortable with others sharing their life praises, particularly when it comes to their children.

So, let me free you from the guilt of sharing your praises with us. We would love to share in your joy with you. Your sharing offers us connection. Your sharing ushers in celebration. We feel blessed by the friendship that recognizes that we all have our own unique, God given blessings. We will praise with you and for you!

WE NEED EACHOTHER!

The cause for community is an important one. We “Special Needs Families” need you. We need your “regular life” to collide with ours. You help us keep our sanity. You keep us connected and help us to feel a part of society. What’s more, you need us too. Those who dare to invest in the lives of a “Special Needs Family” will find that we aren’t too far off the beaten path. Our lives are full of love, laughter, problems and praises, much like yours.

We want to rejoice with you over your child’s accomplishments. We want to cheer your family on as you enjoy a much needed family vacation. We want to intercede in prayer on your behalf. We want you to share your burdens with us so we can be there for you. We hope you will do the same for us!

I hope this helps in freeing you from the guilt of sharing your problems or praises with parents who have a child with special needs. We all need to have authentic relationships. We all need true, meaningful conversation. We want to share in this crazy, wonderful, messy, beautiful thing called life with you all.

 

 

I Ask God to Come Sit With Him A While

When I lay him down to sleep, I pray to the Lord his soul to keep…then I kiss my little boy, say “goodnight”, shut the bedroom door, and wait for what is usually a very long night.

I almost forget that our nights do not look (or sound) anything like most other people’s nights. The double-diapers, zip-up pajamas on backwards, hospital bed with netting kind of nights. The singing-at the-top-of-his-lungs-for-hours, screaming, kicking the walls, laughing hysterically, or “scripting” kind of nights. Yep, I almost forget these things are not “normal” because this is our normal; it’s just part of the way we do life.

We never know what the night will bring. Sometimes, there are nights of quiet rest. Other times we get very little sleep as we listen to our son wrestle through the night.

But every night begins in the same way. I lay down beside my precious son, and pray. I have prayed for him while his tiny hands push against mine. I have prayed for him as he tries to hit me. I have prayed for him as he snuggles up close. I have prayed for him through his tears and tears of my own. I have prayed for him through happy chattering and smiles. Regardless of the behavior or the evening, I pray. I pray for Ezra’s future, that he will have a restful sleep, for his safety, for him to know how much his mommy and daddy love him, and most importantly that he would know how much Jesus loves him.

One particularly hard night, my prayer shifted. Ezra was wound up. He could not focus on anything. He was everywhere and nowhere all at the same time. I continued to whisper softly to him “I love you, Ezra. I love you.” My whispers were met with even wilder thrashing in his bed. My momma’s heart was breaking for my son. What was this thing that seemed to be so much greater a force than he or I were able to control? I sobbed through my usual prayer over my son as I dodged an arm, a leg, and another arm. And just before I could no longer utter a prayer between heartbroken tears, I asked God for something I had never asked for before.

Please Lord, come sit with him a while. Come and sit with him. Fill his room with your presence. Reveal Yourself to Him.

There is such a feeling of helplessness when you are the parent of a child with special needs. My son is often times a prisoner in his own brilliant mind. At night especially, his body seems to betray him and I find myself at a loss for how to help. There are just some things that I cannot do. This thing, this Autism, seems far bigger than me some days. But I know who is even greater.

So, in this small bedroom with its hospital bed and toy covered floor, I asked God to come sit. I placed my trust in the reality of God’s presence and power.

In Exodus 33:14, God reminds Moses of the power of His presence as He declares “My Presence will go with you, and I will give you rest.”

Rest. That is what I want for my precious son. Not just sleep. Rest. I want him to rest in the comfort of security. I want him to rest in the knowledge that God does not ever leave or forsake us (Deuteronomy 31:6). I want him to rest with a peace that surpasses all understanding (Philippians 4:7). I want him to rest in the presence of the Lord.

Now, each night as I lay Ezra down to sleep, I still pray over him, but I always ask the Lord to come and sit with him a while. I have a very beautiful picture in my mind of Jesus coming and sitting at the foot of his bed. I ask God to reveal Himself to Ezra in ways that only He can. And I trust. I trust in the reality of God’s presence.

Do we still have some hard nights? Yes we do. This isn’t some halfhearted trial to see if my child will sleep better if I say “the magic words”.  Definitely not. This is faith. This is faith lived out by acknowledging what I already know to be true about God and His promises. This is me declaring that I have very little control when it comes to this thing called Autism. This is me remembering that God loves my child with an unconditional, sacrificial love. This is me offering up all of my best efforts and asking God to work in ways that I cannot and that He is completely able. This is me reminding my son each night that he is never alone.

This is me declaring the reality of God’s presence and power as I ask Him to come sit with Ezra a while. Thank you Lord, for using my little boy to remind me of your faithfulness and the power of Your presence.

“The Lord is near to all who call on Him, to all who call on Him in truth.” Psalm 145:18

 

Mommy Mondays

I would lace up the pink satin ribbons on my shoes, stand on the points of my toes, and gliding through the room, I could find happiness to the rhythm of a familiar tune.  In the midst of a chaotic life, I found order and grace. I wasn’t the very best dancer, but from the age of two years old through college, the dancing bar and stage were consistent fixtures in my life. Dancing was part of life, it was an outlet, and I loved it.

So, I bought the cute little ballerina bag with the toe shoes painted on the side of it, the tights, the leotard, and the shoes. I dressed my precious daughter in her dance clothes and fix her hair in a perfect ballerina bun. I couldn’t wait to share dance with her. I just knew she would fall in love. I pictured this being her “thing” with dance recitals and costumes for the next fifteen years at least.

She was good….really good. I was so proud of my precious ballerina. However, I began to notice that she grumbled a little each time we pulled up for practice. Her enthusiasm dwindled quickly. She didn’t like the itchy tights, the tight leotards, and much preferred to make up her own dance moves to her own music.  I recall a conversation where I said “Grace, you cannot quit, you made a commitment and we have to honor our commitments” to which she replied “But Momma, I don’t even know how to say that word!”

We finished out our dance year with a wonderful recital. Despite her excitement for the costumes and show, she sweetly declared “I do not think dancing is for me.” Fair enough. We had tried. We kissed dancing goodbye.

So, what next? We went through the list. Would you like to take piano lessons? Guitar lessons? What about a sport? Soccer? T-ball?

“Momma, if it’s ok, I think I would just like to be an ordinary kid. Can I come home from school and just be me?”

“Umm, yes, yes I think that would be just fine.”    …Ouch!

You see, I was trying to find something that would be just for Grace.  Our home is a revolving door of therapists and help for our son. Much time and attention is devoted to his care.  As the parent of a special needs child, it is a struggle to balance equal time and attention between a child that requires “more” and a “neurotypical” child. I wanted to make sure that Grace had an opportunity to have fun and to have a special time of her own.

I had to check myself. First, I never want to mistake activity for quality time. Second, I never want to allow myself to be pushed into the world’s mold of constant motion.  Although extracurricular activities can present wonderful opportunities for kids, there is no “parent code” that declares you a bad parent if your child does not participate in a bazillion (or even one) extracurricular activities. My sweet daughter had reminded me of the value of slowing down and to “just be.”

I did however, want to make sure that I reserved some time aside just for Grace. My solution: Mommy Mondays!  In place of a “thing”, class, or skill, I have made Grace my “thing” every Monday afternoon. It’s nothing spectacular, but its special time set aside for just the two of us to share some ice cream, talk about the day, or play together uninterrupted. I have tried to be intentional during this time about reaffirming to her who she is in Christ. This time has become so special and I am so thankful Grace chose to “just be” this school year.

I want both of my children to feel celebrated for exactly who God created them to be. Too many times parents place their child’s future within the confines of worldly expectations, based on parental interests (I was a football superstar and you will be too. Or I loved dance and so you should too), and influenced by social advancement.

I have struggled from time to time in “letting go” of my son’s future. Because he has Autism, I have no idea what the future holds for him. I have had to look reality head on with the understanding that he may live with us forever, he may or may not hold a job, he may or may not ever get married or even be able to speak in complete sentences. I pray for a breakthrough. I pray for the bondage of Autism to be broken.  At the same time, I celebrate who he is, just the way he is. I cannot make comparisons but rather embrace his precious personality and rejoice in even the smallest of his accomplishments. Having a special needs child has allowed me to understand the importance of celebrating a child’s individuality.

Who knows what Grace may choose to become, how her interests may change over time, or what she will want to do with her time in years to come. For now, my sweet girl wants to “just be” with her mommy. I am thankful. We will celebrate this season.

Grace may never grace the stage with pink point shoes and a sparkling tutu, and that’s just fine. But we will dance together through this journey called life. We will celebrate every accomplishment, find joy in the good, pray through the tough, and “just be” so as not to get lost in the every-day-hustle of life’s demands.




"Is It Ok To Ask God To Heal My Brother?"

Our morning began just like every other morning. There was not enough coffee drank, mismatched socks, lunch kits hurriedly packed, hugs and kisses, and the Frozen soundtrack belted out at the top of our lungs as we drove to school this Wednesday morning.

The pause between two songs brought an opportunity for my six year old daughter, Grace, to speak up. “Hey Momma,” she said almost questioningly (I turned off the music). “I want to ask you something but I don’t know if it’s ok to ask. It’s about Ezra.”  

Ezra is my precious four year old son, who has autism. All at once a rush of thoughts overwhelmed my heart. Grace knows she can always ask anything. I want to make sure she knows that she can especially always ask us about her brother. She needs to ask questions. Questions are good….I wondered what she was going to say.

“Grace, you can always ask us anything, especially about Ezra.” There was a long pause for thought as my daughter collected herself and breathed a heavy sigh.

“Is it ok to ask God to heal my ‘Ezra Brother’?” She continued, “Cause I’m beginning to think that he has a disease. I don’t think he understands us and I don’t always understand him, but I want to and I want him to too.”

Such heavy thoughts for such a little girl. My heart instantly began to ache. She had obviously wrestled with this question for some time. Her words streamed from her lips as though they had been stored up under pressure and now there was no holding back.

“Yes, you can ask God to heal Ezra. You can ask Him because He can do it. He is able to heal Ezra. But Grace, God may choose not to heal him and that’s ok too. We trust God. Grace, I want you to know that God does not ever make mistakes. I believe God knew that you would be the perfect big sister for Ezra. You have such a huge heart, you are so loving, and you help take such good care of ‘Ezra Brother’. You and Ezra are both perfect just the way God made you. We will love Ezra no matter what.”

 “Yes, I will love him no matter what too! But I just had to make sure that it’s ok to ask God for that,” she said very matter-of-factly.

“God wants you to come to Him with your questions, Grace. It’s ok to ask. I do think we should be careful how we talk about it in front of Ezra though. He does understand us sometimes; probably more than we realize. I don’t want Ezra to ever think that he isn't wonderful exactly the way he is.” We were pulling up to the school building.

“Yep! I agree! Dear God, please heal my ‘Ezra Brother’ and make him all better. I want him to understand me and I want to understand him too. I don’t like to see him struggle. I want him to know I love him. Amen.”  She seemed completely satisfied and relieved, like a heavy load had been lifted from her. She gathered up her things, gave me a kiss, and hopped out of the car as though we had been just chatting about ice cream.

I watched my happy-go-lucky girl bounce down the breezeway and into the school building…and then I let it go. I sobbed the deep sobs of a broken momma’s heart.  I sobbed the kind of sobs that leave one feeling depleted of any kind of energy. My heart was heavy for my daughter, for my son, and for this thing called Autism. Did I say everything that should have been said? There is no manual for these types of questions and I am certainly no expert in such matters. Such heavy thoughts for such a little girl.

Friends, let me tell you something. When sadness tries to grip our hearts, we have two choices. We can either allow sorrow to overwhelm our souls, or we can fight for faith from our Heavenly Father.

I knew what I needed. I needed Jesus. I needed Jesus and a Pumpkin Spice Latte (just being honest people).  So, I sat sipping my latte and had a good long visit with my Jesus.

Instant peace. The Lord so graciously brought to my attention all of the beauties from my seemingly overwhelming morning.

Faith. My daughter had demonstrated mature faith this morning. She wasn't asking me if God could heal her “Ezra Brother”, she just wanted to make sure it was ok to ask.  What a great reminder for me as well. I know that God is able, but sometimes I just forget to ask.

Hope. My daughter’s hope was not crushed. Do you know why? Because we serve the God of the universe who truly Is Able to heal. I didn't have to lie or offer up some cliché to cover up hopelessness. I was able to share truth with her. The truth is that God is all powerful, all mighty, healer, and He is in control. The truth is that He wants us to bring our hurts, requests, joys, and sorrows to Him because he loves us. The truth is that God’s plan is perfect. The truth is God does not make mistakes. I can boldly share hope with my daughter about her “Ezra Brother” because my God is good.

Love. The love that my daughter has for her special needs brother runs deep. It runs deeper than words, deeper than actions, and deeper than any diagnosis. She pursues Ezra will her love. She loves him enough to bring his name to the feet of Jesus and to ask for healing. She loves Ezra no matter what.

After finishing every last drop of my latte, removing the black smudges of mascara from my face, and trying to make myself look human again, I went about my day. As I thought more and more about our Wednesday morning conversation I became more and more thankful for it. I pray that seeds of faith were planted deep in Grace’s heart. I praise God for such precious children. I praise God that because of who He is, I can speak truth. I am thankful.

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

I Asked For Help

I have struggled through this blog post. Seriously. Every. Single. Word. That’s because this particular blog post has caused me to be very vulnerable, very transparent. What’s wrong with vulnerability or transparency? Absolutely nothing.  In fact, I consider myself a pretty transparent person. I strive to live with authenticity as much as I can. I certainly don’t shy away from opening up about things and sharing my story…or so I thought.

I thought I didn't mind sharing until it came to this. This one thing that, until the last few weeks, I didn't realize was such a struggle for me. It would be very easy for me to tuck “this thing” away, keep it to myself, and not share it will all of you. But that wouldn't be holding true to the very purpose of my blog which is to offer encouragement to parents who are living with children “on the spectrum”, but also to offer understanding and insight into the life of a special needs family- the good, the bad, and the ugly. So, I have decided to share…

I did it. I asked for help.

 Just so you know, I do not struggle with asking for help in most areas of my life. If I have a question at work, I will ask it. If I need help on a project, I will ask for help. If I have a problem with my car, I am certainly not about to touch it. It has never been a goal of mine to portray myself as “Miss Independent”. I have no problem asking for help!

…except when it comes to taking care of my home and my family. To me, this is one area that I should be able to excel in without someone’s help. It is my honor and privilege to take care of these things. In fact, I love it! I love cooking, cleaning, ironing, and folding laundry. There is something about seeing fresh lines in the carpet from the vacuum cleaner that makes my heart happy. I love being home when my children are out of school. It fills my heart with joy to snuggle up with my two kiddos to read a good book or to play a game. But the fact of the matter is, it is really hard to do all this as a parent of a special needs child.

I hope by now (if you have read my previous blog posts) that you have no doubt how much I absolutely love my precious little boy (who has Autism). I consider him one of my most precious blessings. I also consider it such an honor that the Lord would entrust such a special child to me! Having a child with Autism has given us a whole new perspective on life, love, and what matters most.

That does not mean that it is not hard.

In our particular case, being the parent of a special needs child means that as soon as I try to make tea for dinner, my little boy is trying to pull the boiling water of the stove. It means that I cannot turn my head for very long for fear that he might try to escape out the door. It means that there are fewer home cooked meals and lots more fast food meals because we have to ride in the car to calm him down.  It means many sleepless nights. It means that while trying to accomplish even the smallest of tasks, my precious child is throwing his toy trains at the walls, the windows, the TV, and at his sister. It means occasional aggression, frustration, and anger spewing forth from a little four year old boy. It demands monthly paperwork and logs enough to be considered a full time job. It means that by the time my little ones are asleep in bed, I don’t have the energy left to accomplish all the many things that need to be taken care of.

It’s not all the time. But generally, if I am occupied with anything other than him, he begins to fall apart. Because he does not have the language to express himself with words, he tells me with his body that he just does not know what to do with himself.

Because both of my children are so very precious to me and out of obvious necessity, I chose them first.

So, the dishes had begun to stack up. The floor sometimes looked like a treasure hunt. There came days that my entire family was going to have to go our various ways naked, stay home-naked, or wear three-day-already-worn clothes. There were a lot of unwritten blogs. Chili Frito Pies became a delicacy in our household. Once evening came, I could hardly keep my eyes open.  I am supposed to be able to manage all this! I am supposed to be able to control my child’s behavior. This is my number one job! Why do I feel as though I am doing nothing well? The one thing that I had taken so much pride in doing, I realized I wasn't able to do. I had to ask for help. I had to let go of some pride-something I thought I never really had an issue with.

Here is something else you should know about us special needs parents:  #1 We trust very few people with our children.  #2 There are few who we would feel comfortable with having come into our home on a consistent basis. This is not an issue you can push. It is what it is. We are protective of our little ones and protective of our not-so-ordinary lives.

I prayed and prayed for the Lord to provide just the right person. I knew it would have to be a person who understood the situation, who understood Ezra, and who had a very big heart. The Lord provided.  A very dear friend of ours agreed to be my “helping hands”. She has come in and helped me with laundry. She has helped with the dishes and with cleaning. She has been my second set of hands during the kids bath time (this activity always requires two adults). She played with my little girl so she would not have to play by herself during her little brother’s in-home therapy session.

The first time I walked in to a clean house and an unloaded dishwasher, my eyes welled up with tears. You may think I’m trying to embellish this story, but I’m not. The time I was able to have help bathing my kiddos, our family was able to spend extra time in the evening playing together. In the last week, I have been able to bring my children home from school and just play with them and give them the attention they need without the heaviness of wondering how on earth I was going to have all the other things done that needed to be done for my home to function properly. There has been less chaos and more order.

 Yes, it was very hard for me to get to the place of having to ask for help. Yes, I have been a bit embarrassed to admit that I can’t do it all.  But I am now realizing that it just might be an ok thing, healthy even. I find it almost liberating.

Believe me, there are still many things this special needs mom has to take care of, but what a blessing it is to have someone help to lighten my load. I praise the Lord for my sweet friend and her “helping hands”. I am truly thankful that the Lord continues to use this Autism journey to mold me and refine me…even when it’s not easy and sometimes requires me to let go of some things, such as pride.

If you know a family that has a special needs child, pray about how you might be able to minister to them. Don’t expect a thank you card-they are deeply grateful, they just don’t have an extra second to sit down and write a complete sentence. Even the smallest gesture is a big deal. A word of encouragement, a trip to the grocery store for them, or a cooked meal can make such a huge difference in the life of a special needs family. Just be there for them. Let them know that it’s ok to ask for help!

 

Playing in the backyard: Ezra loves the sound of the wagon crunching the leaves underneath! Grace loves blowing bubbles for her baby brother! ..note her very unique sense of style! 

Playing in the backyard: Ezra loves the sound of the wagon crunching the leaves underneath! Grace loves blowing bubbles for her baby brother! ..note her very unique sense of style! 

A God Who Sees

Lord, you are near.

When my son’s disability weighs upon my heart, I am reminded that You have the ability to accomplish every purpose you have planned for him.

I do not fully understand the world in which my little boy lives, but You do. I do not know his thoughts and do not know all his ways, but You do. You love him with a love that is beyond all comprehension. You go before him. You know him by name. Even when he hides himself in the darkest corner, You see him. There is no place he can run that would escape the view of his loving Heavenly Father.

You rejoice over the smallest of his accomplishments. It brings a smile to Your face when he dances to songs of praise. And oh, how it must fill Your heart with joy when he whispers one of the few words he knows by heart, “Jesus.”

Yes, he is fearfully and wonderfully made. He was made in Your image. He is Your child. I praise You that You are a God that loves with an unconditional love in a world full of conditions. I trust that You reveal Yourself to him and that he knows You in his own very special way. Lord, I ask that You wrap Your loving arms around him so that he may feel secure, calm his mind and his heart so that he can experience peace, and give him the strength to break through the barriers that overwhelm him so.

Lord, I thank you that I am not on this journey alone. When I feel stretched in every direction, You calm my spirit. When the demands of life begin to overwhelm, I am reminded that You are life. I can trust in Your word. I can claim your truths in my life.

As I strive, stretch, and search for daily strength, I am never on my own. My prayers do not go unheard. You collect every tear that I've cried. When my son softly touches my face with his little hands, You are there. When he flashes his beautiful smile, You smile too. Every step taken, word spoken, kiss given, and hug offered is a victory that You rejoice over with me. When I lay awake in bed and listen to my child’s unsettling screams and sounds, You are there. Though I can sometimes be physically worn, You are the healer of my soul. When frustrations and fears creep in, it is You who offers peace. You know my heart even when I cannot put into words the burden it carries. No words are needed in the presence of the Lord Almighty because You know your children.  

I praise You that You are a God who sees. There is nothing that goes unnoticed by You. Even with all of the cleaned up spills, picked up toys, kissed boo boos, refilled sippy cups, and sandwiches made, You are there. In the moments of aggression, meltdowns, stares from strangers, comments, crying, and throwing, You do not turn Your head. You are near. You are ever constant.

This journey of Autism is not an easy one. This journey of Autism is a life long journey. Lord, I thank you that we are not in this alone. I praise you for the sweet victories. I praise you for the storms. Thank you that You are a God who sees. Let this be a journey that brings glory, honor, and praise to Your name. Amen.

 

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!

20131021_162237 (1).jpg

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

 

I Am Able

I believe we all have moments of weakness. Sometimes there are just days that we may feel like “throwing in the towel” or we may justify our “right” to throw ourselves a good ol pity party. Life is unpredictable, sometimes hard, and oftentimes messy.

When these “messy” days come, I like to think back to an old song that probably many of you know and it goes something like this… Count your blessings name them one by one, count your many blessings see what God has done!  It’s good to remember all the many ways that the Lord has blessed us, isn’t it? Our lives are messy because we are all imperfect, but it’s a beautiful mess. The Lord is truly gracious to us.

Another great “go to” thought I once learned is this: on those I –think –I-might-should-just-go-back-to-bed-and-start-over-tomorrow kind of days, to remind yourself “I AM ABLE.”  I learned this “I AM ABLE” idea from a Lisa TerKeurst bible study I once led. I love this idea! It gives such a wonderful perspective for this messy kind of life.

Well, last week was definitely a messy week.  My week first started off by quickly loading my kids into the car for school only to find that a sippy cup of milk had been left in the hot car all weekend long. Apparently some of the milk had leaked out onto the carpet, right underneath the driver’s seat, resulting in a horrid smell. I spent most of the week chauffeuring my family around to various activities with the windows rolled down, trying to air out the death-like odor that was seeping out from under my chair. I kept trying to remind myself of my little “go to” thought: “I AM ABLE”. I am able to drive, I am able to smell, I am able to own enough sippy cups that this particular cup was able to be missing for an entire weekend, I am able to buy milk, I am able to clean the carpet in my car, I am able to have a car in the first place…Yes, thank you Lord, for all these blessings!

The next day, I was folding laundry and feeling very good about my productive afternoon. The kids had had a great day at school, I had given them an after school snack, we had snuggled for a while, I had folded the laundry (left on top of my bed and still needed to put it away), and now the kids were playing while I began to cook dinner. My plan was to put away all of the laundry that was nicely folded on my bed, after dinner had been started. Then, I heard laughing. It was the kind of laugh that my sweet boy lets out when he is having one of his “Autism moments”. The only way I can describe this laugh would be: complete abandon. Its goes beyond silly. It is a very peculiar noise. It is the kind of laugh that does not signal regular “happy play”, but rather a very odd since of being detached from reality. I followed the laughing only to find every single article of clothing that I had folded to be put away, scattered all over the bedroom. There were socks hanging from fan blades, underwear on the curtains, t-shirts in the floor…it was a mess! I am able to fold laundry, I am able to have clothes, my child is able to throw, look at all these clothes that the Lord has provided for us!…Thank you Lord, for all these blessings!

Then, there was bath time. It was towards the end of a very messy week. I was tired. I ran the bathwater and put my sweet boy in to play. He loves bath time! It’s one of the happiest times in his day. Ezra loves to lie back in the water and feel the bath bubbles cover his skin. It’s a sensory thing! He played for quite a while and had a great time. When it was time to get out, I reached in to pick him up out of the water only to realize that beneath the bubble topped water, my little man had pooped. Gross!!! I disinfected the kid. I disinfected the tub. I am able to clean the tub, I am able to give my child a bath, I have running water, I have soap, my child has well-functioning bowels… who am I kidding? This is disgusting! I mean really, how much more messy can this week get? Can’t I catch a break? Ahhhhhhh!!!

That’s right. I was done. I was done with my messy week. It didn’t seem like a beautiful mess at all. It was smelly, gross, and messy. I felt completely justified in having at least a small pity party for myself. And I was pretty sure I was getting a head cold. What else could possibly happen?! 

Later that same night, our family sat on the couch together for our customary pre-bedtime snuggles. Grace was curled up in her daddy’s lap on one side of me and Ezra had actually climbed up in my lap and was snuggling me. He sort of shifted this way and that way until he was sitting with one leg on either side of me and we were nose to nose. And you know what? My three year old, mostly non-verbal, Autistic son looked me straight in the eyes and said, “Hi Momma!”

This is probably only about the fifth or sixth time I have ever heard him say my name.

I am able to hear my sweet baby’s voice, He was able to say my name, I am able to sit and hold my babies on my couch, I have a family, and I am able to care for my children. All these messes are evidence of a full home and a full heart. Even when life gets tough, I AM ABLE because You Lord, give me strength from day to day and You provide my every need.

Thank you Lord, for all these blessings! Thank you for my beautiful mess! Thank you that I AM ABLE! And thank you Lord, for the refreshed perspective.

I am able to have sweet moments like this with my precious little man!

I am able to have sweet moments like this with my precious little man!

Perfect Peace

“You will keep in perfect peace him whose mind is steadfast because he trusts in you.” – Isaiah 26:3

I have a confession. I have a very hard time memorizing scripture. No matter how much I want to have God’s word “hidden in my heart”, it just doesn’t come easy to me. It’s something I really have to work on.  So, I have adopted a little habit that helps me to memorize these little life-giving nuggets of truth. This habit is what my husband jokingly calls my “Unabomber Notes.”

I have scripture written on little post-it notes which are hidden all around our house (I guess you could call that Unabomber-ish). So, as I go through my day I can read these verses and as they encourage me, I am also memorizing them.

This verse- Isaiah 26:3 – has become one of my very favorite verses. In fact, I love it so much that if you were to visit my house, you would see it not only written above my kitchen sink, but also by my nightstand, in my car, and in my day planner.   

The reason this verse has had such a huge impact on my heart is because of a thought I had not too long ago. This was my thought:

On one of the rare occasions that my sweet boy (with Autism) is able to look up at me and actually make eye contact with me, what will he see? Will he see a mom that is Tired? Frazzled? Or Frustrated?  OR will he see a mom that is Peace-Filled? Content? And Joy-Filled?  What message am I sending both of our children? What do they see when they watch me?

You see, in Isaiah 26:3 the Lord says that he will “KEEP” us in Perfect Peace if our mind is steadfast because we trust in Him. I am so very convicted to be sure that I am constantly putting my trust in the Lord and meditating on His word- because that is the only way to “keep” in perfect peace.

If you have a child with Autism, then you know that most of the time, your house can rarely be described as peaceful. However, I am coming to understand that even though my life in general may not always be described as Peaceful- I can still be Peace-filled. That’s what I want. That’s the example I want to set for both of my children.

Thank you Jesus that you offer us Perfect Peace!