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

New Life through Death: Beauty Comes Through Times of Brokenness

As a parent, there are just some things that you try to shield your children from. You try your hardest to balance the realities of life with the truths of heaven, covered by a veil of protection from the depths of the pain and suffering that this world has to offer. There are times when God allows that veil of protection to be torn away and the fullness of tragedy and the frailty of this life come billowing in. Throughout these past few weeks, that’s exactly what has happened. There was no escaping what God had planned. There was no protecting ourselves or our children from having a loved one suddenly and tragically taken from earth. With all our inadequacies, we were forced to try to explain the unexplainable.

I am no great theologian, but I do know this truth: God has always been super at being Sovereign. You see, the same God that spoke the world into creation, who said “Let there be light” and there was, who created you and I, who knows how many hairs we have on our heads, who is the same yesterday, today, and forever, who spoke about prophecies that we are watching come to fruition before our very eyes, is the same God who allowed this tragedy in our lives. Do I understand it? Not at all. Am I heartbroken? Completely. Do I doubt God or His goodness? No. Do I believe God has a plan and a purpose for all of this? Absolutely.

And so it was with hurting hearts but unshaken faith that we began to explain to our daughter, Grace, about the terrible wreck that took who she considered her “Uncle Pasha” away. She cried and cried. She asked questions. Then, in an unwavering voice she said, “Well, I know where Pasha is. He is in heaven cause I know he loved Jesus.”

Grace has been asking deep questions about Salvation, our need for grace, God, Jesus, Heaven, and Hell for about the last year. We have spent a great deal of time sharing with her about faith and what it means to “ask Jesus into your heart.” We went slowly. Our greatest fear was that she would make a decision to become a Christian just because she thought we wanted her to. Our greatest desire is for our children’s faith to be their own. So, patiently and ever so carefully we have shared about Jesus with Grace. Grace knew all the “answers” but we have been waiting for the day when Jesus would cause her head and her heart to collide in a way so that she had to, wanted to, couldn’t wait to ask Jesus to be her Savior because she needs Him.

I watched Grace watch others. As much as we tried, there was no way to fully protect her from the sorrow and grief we all were feeling. Grace watched. 

As I was tucking Grace into bed one of these seemingly endless nights, she began to recount all that she had noticed. She had noticed how devastated and hopeless some people were grieving and compared that to others who seemed to be grieving their loss, while clinging to hope.  “I guess that’s cause the ones who have hope know Jesus and they know that Pasha is in heaven and they will get to see him again. Right mom?”   “Yes, baby. That’s exactly right.” I could almost actually see her little brain at work, processing and taking it all in.

We arrived early the morning of the funeral. We were very busy trying to prepare everything and to make sure that the “Celebration of Pasha’s life” would be everything it should be. I was busy just trying to hold it all together.  I watched my little girl stare at the wooden box at the front of the sanctuary. “Momma, don’t these peopleknow that Pasha is not in there? He is in heaven!” “Yes baby, we know.” Then, without hesitation she said, “Momma, I am ready. I need to ask Jesus into my heart.” There was about ten minutes until the service started.

Looking back, I cringe at my response. Ten minutes. That’s all we had. I was an emotional basket case and was trying my hardest to remain composed as I was about to stand in front of a room full of people and address them all. I didn’t want to rush with Grace. I wanted to have time to visit with her and pray together. “I am so excited that you are ready, Grace! Why don’t we visit about it after the service? We will have time then.”

We sat in a room full of people, gathered together in Jesus’ name. Just as the bible promises, God’s presence filled the room as we praised God for who He is, who Pasha was in Him, and for others to experience new life in Christ. God’s word says that He is near to the broken hearted, and that is just what He did- He was near.  In that moment, all the brokenness of our hearts met with all the goodness of God and it was a beautiful service. As the pastor invited people to come forward to pray and to do business with God, I felt a little tap on my arm.  “Momma, I gotta go forward. I gotta ask Jesus into my heart right now!”  It was almost as if Grace was politely saying Hey Mom, Im going forward to ask Jesus into my heart. You can go with me or Im going by myself! There was urgency in her voice and excitement in her eyes. It was time.

There, on the front step of the sanctuary, our sweet Grace prayed the most beautiful prayer we had ever heard. It was a simple prayer, wrapped in the faith of a child and the grace of God.  Our Grace asked Jesus to forgive her of her sins and invited Him into her heart. We cried tears of joy as Grace smiled the biggest smile and she radiated joy.

I’ve not heard of too many people being saved at a funeral, but Grace was. I praise God for the gentle way He has pursued Grace over these few years. I am so thankful for God’s promises and truths that we have been able to share with our daughter. Most of all, I am so thankful that God would use the life and testimony of Pasha as the final catalyst for Grace’s salvation.  I am so thankful for Pasha, this boy that we loved as our own, and for the life he lived. I am thankful for the great love and example that he shared with our little girl.

Grace has a new birthday now. She began her new life in Christ on March 11, 2015. I can’t help but think that as Grace’s name was written in the Lamb’s Book of Life, and as all of heaven rejoiced in her decision, that our sweet Pasha was there celebrating as well. We praise God that He can use tragedy to bring about something triumphant and blessings from brokenness. 

I firmly believe that God is not done using the testimony of Pasha’s life for His glory. I firmly believe that as God continues to write Grace’s life story, He will use her for His glory as well. Our God is not a haphazard or careless God. God is super at being Sovereign. It is in Him that we rejoice. It is in His hands that we place our broken hearts. It is in the hope and grace of the cross that we have the power to press on. It is by the blood of Christ that we are saved…including our sweet Grace. Hallelujah!

Celebrating Grace's spiritual birthday! We had cupcakes and wrote the date in her bible to celebrate her new life in Christ!

I Stopped for a While

The last few months have been a whirlwind for our family. Such a whirlwind, in fact, that I was ever so slightly swept away by all that October, November, and December had to offer.  God called, we acted. As the Lord quickly opened one door after the other with an almost audible “go”, we obeyed.  It was not what we had planned, but knowing that His ways are higher than our ways, we trusted and found ourselves in a new town, with new jobs, new schools, a new home, and a new adventure.

You, my blog reading friends, have not heard from me in a while because at first, I was just so busy.  Then, you did not hear from me because I felt it necessary to not be so busy.  Every once in a while we must stop. That is exactly what I did.

Certainly, life continued. There were classes to be taught, bills to be paid, clothes to be washed, homework to be done, and many other daily tasks to be attended to.  But besides the most necessary things, I stopped.

I needed some time to not only pour into others, but to be poured into. I needed some time to make sure I wasn’t just writing about life without living in it. I didn’t want to just capture moments with a camera or with my pen, but I wanted to bask in each second of the day.  I made sure to listen to my daughter’s hour long, amazingly detailed stories with full attentiveness and to watch my son play with even deeper wonder and amazement at the complexity and beauty of his life. I took in the cuteness of little freckles, tiny toes, and silly giggles. I wanted to soak in the gift of the mundane.  I wanted to not miss a moment of the extraordinary.  I needed to be sure that time was taken to incorporate praises of thanksgiving for each and every blessing that the Lord has so graciously bestowed upon my life.

There are times, I believe, that we must stop to shake off the things that might possibly be clouding our view of the “life to the fullest” that God promises us in John 10:10. I have been reminded that a “life to the fullest” may not be full of accolades, great accomplishments, or highly “notable” moments according to the world’s standards. A “life to the fullest” is not one of superficial relationships, haphazard conversations, or rushed routines.  Instead, a “life to the fullest” is lived with intention. God says that He came so that we could “have life and have it to the fullest!” He didn't come for our lives to be full of “good things”, but of “God things”.  I want to shake off the things that keep me from developing a deeper faith. I want to shake off the things that destroy my hope.  Most of all, I want to be so filled by the Holy Spirit that I am a reflection of Christ’s unconditional and unfathomable love.

So, I have been busy shaking things off. I've been busy about making sure that I do not allow life to just happen to me. I have been busy about living in each moment and soaking up the abundance of blessings hidden in the routine, mundane, extraordinary and even the busy moments that are unique to my life. I am thankful for our whirlwind and now, I am thankful to have shaken some things off, and to refocus for the New Year... It's good to see you all again! 

Ezra gave Grace kisses. She was so excited! He has allowed her to kiss him before, but this time he was the one looking for kisses!

Treasuring this beautiful girl and hours spent building her castle.

Ezra has "noticed" our puppy and loves to pet it. This is HUGE because he is learning to be "gentle" and have "soft hands." He does a great job!

Grace and Ezra have begun to play together more. They have little games and jokes between the two of them. It fills this momma's heart with joy!

"The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the fullest." John 10:10

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.

Snapshots

Let’s do some real life together today, shall we? My family’s reality probably looks a little different than most. That’s because we have a precious little boy who has Autism. Today I am sharing some real life pictures that help to explain some of our day-to-day “normal”.  Our Ezra is an amazing little boy! He is my “little puzzle” and each day I have the wonderful opportunity to learn from him and learn more about him

Ezra’s “thing” is trains. It is very common for a child with Autism to become attached to a particular character or interest. Ezra loves to line his trains up. He always puts them in a particular order, has to have them lined up perfectly, and will literally spend hours reconfiguring their order and placement. Also notice the bare feet! Ezra has Sensory Integration Disorder and struggles to keep shoes or socks on for very long-they are too constricting. Have you ever seen a mom with a barefoot child in cold weather and mentally judged her for not properly covering her child’s feet? Have you ever stopped to think that there may be a reason that she just absolutely cannot keep shoes and socks on his/her feet?

Ezra spends a lot of time sitting in the bathtub…without water…with his clothes on. There is something about the tight space and tall walls that calms him. When Ezra becomes overwhelmed, many times he will take himself to go sit in the bathtub. He doesn’t generally take toys with him. He just sits. And the simplicity of the solid color walls and closed in space soothes his sensory overloaded mind!

Ezra likes to study objects from very different angles. This is a form of “stimming”. Stimming is one of the symptoms of Autism. It is a repetitive body movement that self-stimulates one or more senses in a regulated manner. 

Ezra can ride a bike too! With the help of Ezra’s AmTryke, Ezra gets to ride his bike along with his big sister. There are special straps that help to secure him in his seat and straps that keep his feet from slipping off of the pedals. There are also special straps that hold his hands on the handle bars but he is just not ready for that yet…and he is not yet willing to let go of the trains in his hand! The AmTryke has a bar that extends from the back so that we can push him. We have faith that one day Ezra will be able to ride a bike all on his own!

Ezra loves to play in water…even muddy water! We encourage this sort of sensory input, especially because for so long he was absolutely terrified to get any dirt on him. To some, this is just a cute picture of a kid in a mud puddle, but to us, this is a victory!

This is Ezra’s very special bed. It zips up completely and the zipper is on the outside. This is for his safety. Ezra is unable to sleep in an open, standard bed. When put in a “regular” bed, he jumps all night and is unable to bring himself to go to sleep. Ezra also tries to elope. (Both insomnia and elopement are typical with many children who are “on the spectrum”) Ezra finds comfort in his cozy bed and will often times “request” to be zipped in so he can calm down and give himself rest. 

I love this picture. Besides the fact that it is just sweet, this picture represents Connection. It is often times hard for Ezra to make eye contact, let alone to allow someone into “his world”.  We captured this precious moment this last week. The key to making a connection with Ezra is to make yourself available. We usually are most able to make a connection with Ezra when we lay on the floor. Then, he will usually come and sit near us. Connection is not something you can force. Connection happens by patiently pursuing and by waiting for Ezra to invite you “in”.

I am no Autism expert, but I have learned that the key to life “on the spectrum” is letting go of “normal” and embracing the unexpected, sometimes crazy, very special life that the Lord has blessed us with. These little snapshots of our life give just a glimpse into our every-day “normal”. 

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!