Posted in Church, Faith, parenting, Special Needs Kids, The DJ Diariers, The DJ Journey

The Vision of God

The vision was as clear as it was murky. The image was of DJ walking to the front of the church toward the pulpit. I could make out nothing more than the church had two aisles leading to a step up to the platform where the podium stood. That made sense because it was the exact layout of the church we were attending. What made little sense was that even at two-years-old DJ could not walk.

That vision, like most of the others pertaining to DJ, was given to me when DJ was the sickest. He was in and out of the hospital sometimes multiple times in a month. It was terrifying, stressful, and more than a little taxing on my faith. Yet, whenever I was about to crash God always came through with a vision of hope. He always showed me something that seemed impossible with my current circumstances but instilled profound hope that kept me pressing forward.

I have no explanation for why or when God chose to show me these future events. Not one of them occurred in the midst of fervent prayer. Instead, they came out of the blue. Sometimes I hadn’t even prayed specifically for what God showed me but the vision was an extension of my heart’s desire. That was the case with this vision.

I was busy trying to keep DJ alive. His inability to walk was a low priority. Obviously, it was something I wanted for him but in the big scheme of things, I just wanted my baby to live. I had the vision twice, first at home and then a few days later at church. Me being me; I came up with a reason for it. I determined that one day DJ would walk to the front of our church and reveal to us what God had been doing inside his nonverbal heart and mind.

Fast forward about 15 years. We’ve moved to a different city and no longer attend that church. DJ is walking, but he is still nonverbal. Though the vision was anything but forgotten, there was certainly no evidence that it was about to be fulfilled. But isn’t that just like God?

This past Sunday we were at a church we had only been to once. No one in that church had an inkling as to the vision I had so many years ago. But this church was one of the most loving churches toward DJ I have ever encountered. I’ve had pastors and others love and accept DJ. But the entire congregation at this church has such genuine love and acceptance it stands above all others. Knowing that I was still unprepared for what was about to happen.

Just before he was about to deliver his message, Pastor Rick approached Steve and me. He asked if it would be okay for him to take DJ to the pulpit with him. I’m not sure exactly what he said but something that indicated this was not his original plan. Though we had no idea how DJ would respond we consented. Rick turned to DJ and asked him if he wanted to go to the pulpit with him and DJ agreed. It was when Rick took DJ’s hand in his and they started toward the front that it happened.

IMG_1727In the blink of an eye that long ago vision came to life. What I had failed to notice before, was how much the sanctuary at Bethlehem Christian Church resembles the one at Hill-n-Dale where we attended when I had the vision. They are practically identical. I suppose since it had been so long since I had been to Hill-n-Dale I missed the similarities. But at that moment, it became clear.

The vision wasn’t of the aisle at Hill-n-Dale. It was Bethlehem. And DJ didn’t have to speak his testimony he was living proof of it. I don’t know why God made me DJ’s Mommy. I’m certainly undeserving of the task. I understand even less why God gives to me these glimpses of the future. The only thing I know for certain is that DJ is God’s instrument to reach an often cold, hopeless, and cynical world. But in the process of doing so, he gives me what I need to carry on each day. No matter how hard and painful it is sometimes to parent DJ, God provides me the exact measure of hope I need to carry on. And more love than I can fathom.

Pastors like Rick are far and few between. They may love the Lord, but understandably they are leery of anything that may disrupt their message. Rick invited DJ up with him not knowing how DJ would respond but accepting that if DJ took the limelight from him, it would, in fact, be Jesus stealing the show. IMG_1736

Posted in parenting, The DJ Diariers, The DJ Journey

God’s Painful Lesson – The DJ Journey 3

To understand why Steve and I were so confident in a message from God that was in direct opposition to our baby’s doctor, you must know where we had been. Steve had endured a painful divorce that drove him to his knees and closer to God. I was a wild child with a wilder past who finally accepted the call of Jesus at nearly thirty-years of age. Though our pasts were different, we had one thing in common. We had discovered a life-altering faith that would never allow us to be the same again. It was our faith in God that bonded us and within eight months of meeting we knew we had discovered a love of a lifetime. Everything we had ever wanted and joy we had never imagined we found in each other.

I had two sons, Colton and Dalton, from a previous marriage, which Steve would later adopt. He had two sons, Nathan and Jacob, from his previous marriage. Despite all the odds agains us our life just worked. Our family blended as if they had been born to be together despite outside influences that tried to tear us apart. We could not have been happier. Our lives were perfect. We were serving God faithfully; we were living a romance novel sort of love and our kids were happy and connected. So, when a surprise pregnancy arrived we thought it was a perfect addition. We were wrong.

Due to complications during pregnancy from a blood disorder I have, I was already in the hospital. I was resting comfortably in my hospital room. Steve left to go take care of our boys. Suddenly I had a cramping in my abdoment that felt more like I needed to go to the restroom than anything else. Able to walk on my own I unplugged my IV and made my way to the bathroom. Halfway there a mass slid to the the floor with a sickening thud. I let out a blood curling scream and yanked the emergency cord which brought a multitude of nurses to my side.

There was not one of them who wasn’t certain I had just miscarried. Tenderly they got me back to bed and told me to call Steve. I was so hysterical Steve couldn’t understand anything I was saying. He only knew I needed him and rushed to my side.

I was a complete werick. “He said it would be okay!” I screamed repeatedly as I thrashed in my bed.

“Who?” A nurse finally asked.

“God!” Well, you could have heard a pin drop at that proclamation. All movement in the room ceased. It was as if every previously confident nurse had lost her way. No one knew what to do with me as I kept screaming my statment of faith over and over.

Someone eventually stepped into the hall to call my doctor and literally ran into a female minister of the hospital. The minister was immediately hustled into my room in an attempt to calm me down. The nurses worried over my mental state. After all, not all patients proclaim to converse with the Almighty.  They were certain I had just miscarried my child yet I was ranting about God saying the baby was okay. They were counting on this female minister to talk me off the proverbial ledge.

Instead, the minister became so convinced by my faithful shouting she launched into prayer. Suddenly, she was thanking God for saving my baby.  Now, no one really knew what to do. My doctor arrived into the chaos to do an ultrasound and prove that I had lost my baby. However, to the shock of everyone, the baby’s heartbeat filled the room. Whatever had slid mercilessly to the floor was not my baby. I was still pregnant.

By the time Steve arrived mourning had turned to joy and shocked gasps had become the talk of the floor. Suddenly, complete strangers appeared in my doorway just to say they had heard of my faith and how God saved my baby. It was more than a bit surreal.

The next morning I was still the talk of the labor and delivery unit. The day shift came in to celebrate with me, I received gifts and was very overwhelmed by the attention. My doctor rolled in the ultrasound machine once again. This time it was a prcaution as I was about to undergo a blood transfusion. There were three or four nurses in the room and the female minister from the night before. We were all still talking about what a miracle God gave us when I noticed my doctor’s face.

“What’s wrong?” I asked but hated myself for it. I already knew.

My doctor, close to tears answered, “the baby’s heart isn’t beating.” And just like that my miracle turned to tragedy. My precious little baby, who I was certain was a little girl, was gone.

Where did I go wrong? Why had God said the baby would be okay knowing she would die? It was the first test of my faith and the questions kept me up all night. I sat staring at the wall asking the same thing relentlessly. Finally, somwhere just before dawn, God answered me. “I said it would be all right. You assumed ‘it’ was the baby.”

Was that true I ran it over in my mind. Not once did I hear God say to my heart the baby would be okay. He only said “it would bne okay.” Obviously, “it” now meant my situation no the baby. Talk about a wake up call.  It was the firt time I realized I could hear from God and still get it wrong. It was a powerful, painful lesson that is very much a part of my faith today. And what makes me always get clarification before I start putting words in God’s mouth.

 

 

Posted in Education, My Life My Way, Special Needs Kids, The DJ Diariers, This N That

What Does Time Cost at Costco?

In a world that is daily increasing in the number of special needs children, it is exceptionally important what parents teach their typical children. Even toddlers have the ability to recognize that DJ is unlike them. Of all the responses we receive in public, we never had one like today.

Costco shoppers have always been the most tolerant. They smile and go out of their way to speak to DJ. Once in Walmart a woman actually said to me, “What’s wrong with it?” In reference to my child! DJ isn’t stupid. He picks up on unkindness. So, needless to say, Costco is DJ’s favorite store. Since the store is so big we push DJ in a wheelchair which really draws the eye of children.

Today two little boys were riding in a shopping cart and caught sight of DJ as we rounded a corner. The oldest looked to be maybe five and the younger about three. The younger questioned his older brother about why DJ was jabbering and flailing about. Their mother, unaware of what was taking place, pushed them away before I could hear the older one’s response. As we were leaving we ran into them again. The older one immediately began hollering at DJ and waving frantically at him. I mean this kid was serious about getting DJ’s attention. When he did, DJ gave him an enthusiastic wave back. The younger one immediately turned incredulous eyes upon his brother.

“He waved at you.”  The little one was so in awe you would have thought his favorite movie character had just come to life before his eyes.

“Wave at him. He might wave at you too,” was the older child’s advice.

DJ, now seeing he has the attention of two children, is jabbering in that dialect that only he understands. He was rocking the wheelchair trying to roll over to the two. His little arms were flailing about as he simply couldn’t contain the enthusiasm of having what he rarely has; the undivided attention of another child.

When the youngest one, with his big beautiful brown eyes round with wonder, gave DJ a wave and DJ jabbered and waved him the little boy just couldn’t believe it. These two little boys were amazed that DJ was “talking” to them. When their mother turned to see what all the excitement was about they both began pointing at DJ with enthusiastic gestures and simultaneously telling her how DJ was waving and “talking” to them. We had a good laugh about it while all three boys were going crazy over each other. Those little boys were amazed that DJ was interacting with them.  They treated DJ like a rock star.

Parents need to know the importance of encouraging their children to ask questions about DJ  and to interact with him. DJ LOVES to get the attention of kids. He tries his best to talk to them either jabbering or using his iPad. Unfortunately, it is a very rare occasion when the child will respond in a positive manner to him. Science has shown us that children learn physically and intellectually from other children. Therefore, no one wins when the opportunity to interact with a special needs child is lost.

Somehow that mother at Costco has successfully taught her two very young boys that they should be accepting and loving of all people. And in the process of doing so, her children made DJ, for a brief moment in time, just like every other little kid. That is a blessing that defies words and will have a positive impact on DJ for the rest of his life.

 

Posted in My Life My Way, parenting, Special Needs Kids, The DJ Diariers

WARNING: If You Go Grocery Shopping You Might Get Spanked

DJ decided one day he didn’t want to go grocery shopping.  He wanted his parents to continue drive him around aimlessly like some sort of unpaid chauffeur.  Because I had the audacity to disobey his wishes he threw a temper tantrum deserving of an Oscar.  For a nonverbal child he can be extremely loud, demanding, temperamental, and extremely stubborn.

Because DJ has significant disabilities he believes he is entitled to the Helen Keller mentality.  I’m inclined to agree.  We just disagree on what period of Helen’s life he should emulate.  He prefers the pre-Annie Sullivan days when little Helen was allowed to roam free taking from anyone what she desired and steam-rolling over anyone who dared get in her way.  I, however, am more inclined to the older Helen who is wise and prosperous as a direct result of  Ms. Sullivan’s discipline.  Therein lies problem one.

Problem two is that although DJ doesn’t speak he certainly comprehends.  Well over 90% of the time DJ is crystal clear on what is being asked or expected of him.  He is also well acquainted with appropriate behavior.  Anyone who spends time with him becomes aware of this fairly quickly.  But to strangers his intelligence and comprehension is masked behind his obvious disabilities. And that is problem three.

There are times when all three of these problems culminate into the perfect emotional storm. Such was the case on a trip to Whole Foods Market.  My husband, Steve, dropped DJ and me at the door.  That sent DJ immediately into def con 5 tantrum.  DJ likes to ride in the car and doesn’t tolerate well any interruption of what he desires to do.  In his little mind this public place was the perfect spot to stage an uprising.  He was certain that with enough vocals and emotion he would have everyone eating out of the poor little disabled boy’s hand.  But in my mind, I’m thinking being special needs doesn’t give him a license to be special bad.

To his credit, DJ spotted his audience much quicker than I.  An unsuspecting middle-aged woman just getting her shopping cart was about to be thrust into DJ’s world.  Looking back I almost feel sorry for her – almost.  DJ began screaming in his dialect that no one understands and stomping his foot in pure unmitigated anger.  Just as the lady passed us DJ’s hand snakes out and snatches her shopping cart.  With all his might he hangs on to her shopping cart and screams as if he is about to be murdered.

He didn’t just startle the poor woman he scared the crap out of her!  Her terrified eyes flew to mine.  I was immediately struck with the notion that I could probably ask this woman to give me every dime in her bank account and she would happily oblige if I would just pry my kid off her.  That thought didn’t have long to settle because it was edged out by a parenting philosophy I adopted with my first child.  Where you show it is where you get it.

I’m not easily embarrassed but that didn’t stop my boys from trying to get away with things in public, hoping against hope I’d give into them if others were watching. I give my boys room to fly and my discipline leans toward talking it out, finding out where they went wrong and finding a solution for the future.  However, staging a public coup was never a wise choice.  If they were brazen enough to try such tactics, I was brazen enough to spank their butts for all the world to see.  For each child it took no more than twice for them to quickly figure out a public spectacle was not in their best interest.  I was NEVER the mother in a store with a screaming, crying child that drew everyone’s eye.

That day in Whole Foods Market was DJ’s first encounter with the “where you show it is where you get it” mentality.  Because he is special needs he was given far more leniency than his able-bodied brothers.  In a calm voice I explained to him in no uncertain terms what was going to happen if he didn’t get control of his little volatile emotions.  However, during that discussion the lady now caught in DJ’s cross hairs was out of earshot.  She was about to respond to a situation she only thought she saw all of.

The stage was set for drama and us being us we delivered.  Without hesitating, I swatted DJ on the butt just before untangling his hand from her cart.  Now, for all that would like to crucify me for daring to spank my child a few things you should know.  First, I subscribe to the spare the rod spoil the child mentality.  Second, he was wearing a thick diaper that made more sound than inflict pain.  And third, I don’t really care what you think because you don’t have to live with him.

The poor unsuspecting lady in Whole Foods was about to get her first lesson in Joan Zone parenting.  When I gave DJ his single swat on the behind she swelled up with indignation,   looked down her very pointed nose at me and said, “I can’t believe you spanked him!”

Now, granted I could have taken the time to explain DJ’s medical history, but it wasn’t like I was beating the child.  He didn’t even cry.  In fact, DJ’s only response to his spanking was to stop screaming.  I never punish DJ for things he truly can’t comprehend.  But I know the difference in what is his disabilities and what is him simply acting out.  Rather than explain myself I took the frame of mind of, “You have no inclination as to what it takes to raise this child so step off!”  I didn’t say that.  Instead, I looked at this woman standing there judging me, pointed a very determined finger at her and said, “I’ll spank you too.”

The woman gave me an indignant “hummpf.”  She stalked off holding her nose so high in the air she would have drowned had it been raining.  Poor Steve who had been parking the car during this fiasco came in just in time to hear my response.  “Did you just threaten to spank that woman?”  He asked incredulously.  I merely shrugged, completely confused that after all these years of marriage he still has to ask such questions.

I’d love to give you the details of his very wise and logical speech about handling the situation differently but quite frankly, I wasn’t listening.  I positively adore my husband he is the most loving, intelligent person I know.  At the risk of sounding arrogant, no one knows DJ like I do.  DJ is my blessing, son, student, full-time job, patient, client and sometimes nemesis.  Steve is the most fantastic dad I’ve ever encountered.  But DJ is kryptonite to his superman parenting.

Later, we ran into the woman again.  At this point DJ has stopped his emotional terrorism.  He is now pushing his little walker right beside the shopping cart like a well behaved little boy.  He is smiling, laughing and stopping periodically to grab me and jabber in a way that even I don’t understand.  But understanding isn’t the point, attention is.  So, I stopped each time, leaned down on his level and give him my undivided attention.  It doesn’t matter that this turns a thirty minute shopping trip into a two hour event.  What matters is that even though I don’t understand what comes out of his mouth I’m make a genuine effort to understand what’s in his head. And it works.  With each interaction I learn a little more about how a little boy locked inside himself is clawing his way out in a desperate attempt to communicate with the world around him.

Our second interaction with the unwilling participant in DJ’s drama was much different than the initial.  With tears in her eyes, the woman reached out and grasped my arm.  She tried to explain how she didn’t understand and how sorry she was that her initial assessment of me was way off base.  I quickly assured her that I understood and that prior to having DJ I may have responded the same way.

I tried to explain to her the important message I want to say to you.   Special needs kids are forced to live in a world that doesn’t understand.  The world won’t bend their lives to administer to the least among us.  These kids must learn, to the best of their ability, how to navigate a confusing difficult world.  Because someday parents won’t be here to part the seas of a non-conforming world.  One of the most difficult aspects of parenting a special needs child is preparing the child to live in world that is chaos to them when their parents are no longer here.  I arrived at the conclusion long ago that coddling special needs kids, giving in to their very whim and not discipline them is more of a handicap than their disability will ever be.  So, the next time you’re in a public place before judging another’s parenting skills, keep in mind that what you’re seeing isn’t the entire story.

 

 

 

Posted in Education, Homeschool, The DJ Diariers, Valentine's Day

My Very Special Valentine

Despite homeschooling DJ we always have a Valentine’s Day party.  We’ve been talking about the party this year for a week.  Last night before he went to bed I told him all about the things we’d do today, much to his excitement.  We were going to go shopping, make cupcakes, crafts and just all around merriment.

Look at our cupcakes!  Aside from DJ being a little heavy handed with the sprinkles, they are perfect.  And our giant chocolate kisses turned out perfect, despite it being our first time attempt.

 

Anyone looking at these pictures would think we had a great time.  You know what?  They would be WRONG!  Somewhere between last night’s excitement and this morning’s reality DJ lost his “give a care” chip.  He was not only uninterested in any sort of Valentine’s Day activity but he made sure I suffered while making him do them.  Meanwhile, I’m living in some idiotic state thinking he’s going to warm up to the idea.  I was sure that at any given moment the merriment I had dreamt of would commence.  Wrong again!

Lost somewhere between the crazy notions of, “oh, he’ll come around” and “by george it’s a party and we’re going to have fun if it kills us both”, I came to my senses.  It’s not like guests were arriving at any moment.  The only guest was the dog and she can’t have chocolate or cupcakes.  There’s a reason he has special needs. Uh… because his needs are special (perhaps not as special as his mother’s though).  And it’s homeschool for crying out loud.  I’m not even competing with other mothers.  Apparently, I’m just crazy.

Alas, I gave up the party mentality and let the child go watch Big Hero 6.  And for that, I got the sweetest gift of all; a hug and big kiss from my very special Valentine.

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I’m Still Proud To Be DJ’s Mommy

 

I’m DJ’s Mommy

It’s always fun to go back and read things I’ve written about my boys. You think the moments that bring us joy, laughter and hope will never be forgotten but time is a thief. It robs you of the ability to accurately recall events as life continually creates new memories. After reading this column written many years ago I don’t recognize that person I was once but through the years I’ve managed to hang on to the love lesson DJ taught me.

Posted in Birth, The DJ Diariers

Breaths Of Heaven

When my son DJ made his world debut it was with gusto. Born two months premature he was a 3-pound wriggling, screaming, purplish mass that belied all the serene birth scenes people often describe. Not one to dress up facts my first words were,  “He looks like an alien.”

DJ was quickly weighed, swaddled and rushed to the neonatal intensive care unit (NICU).  Soon a distressed doctor arrived with the grim news that DJ may not make it through the night. When neither Steve nor I responded, the doctor apparently thought we were in shock and asked if we understood what he was telling us. This scene repeated itself throughout the night until finally we told the doctor we understood and respected him but we believed our God had a different plan. Boy, anytime you want to shake up a medical emergency insert God in the middle of it. The responses are greatly varied. We were fortunate that DJ was born when this doctor was on duty because he too was a Christian.

In the NICU the sickest babies are always the ones closest to the nurses’ station, so DJ was the first baby visible to anyone coming in. DJ’s health was unpredictable at best. We never knew how we’d find him, but a couple of good days had lulled us into a sense of semi-comfort. It took nothing more than pushing open the NICU double doors one day to remind us just how false that comfort was.

Three nurses were gathered around DJ’s clear incubator. They were alternatly checking the many wires and tubings that covered his little form and flipping buttons on the machines that surrounded him. DJ, with his mouth open, was squirming with all the sickly energy he could muster. His entire body was red from his distress, but with a tube down his throat his wails were cruelly muted.

As parents our instinct is to protect our children. If we can’t protect them from pain, our next response is to comfort them through it. I could do neither. DJ was so medically fragile that we had not yet even been allowed to touch him, let alone actually hold him.

So, there I stood, unable to do anything but watch this hellish nightmare unfold. I forced myself to remain rooted in place denying me the maternal instinct to run to my baby, knock all the nurses out of the way, snatch my precious, beautiful little “alien” from the mangle of tubes that engulfed him and let him know that Mommy was near. But I couldn’t.

birth

The NICU is always filled with the sounds of soft chatter and the clicks and beeps of life-saving equipment. But in this moment, seeing but not hearing my baby’s gut wrenching anguish just shut me down. It was like my mind decided that if I couldn’t hear my baby, I wasn’t going to hear anything else. The entire world, or least the portion I occupied, became frighteningly silent.

Silent tears spilled from my eyes. In my white-knuckled grip was a blanket I was bringging DJ that my mom had made, since she felt guilty about not getting to the hospital as much as she wanted. We couldn’t put anything inside the incubator with DJ but we could drape the blanket on the outside of it. I thought if DJ was sleeping under the canopy of the blanket she made for him, mom would have a little peace of mind. I had no idea that it would be me that found comfort in the blanket.

In the throes of this maternal nightmare my empty arms ached to be filled. I pulled the blanket to me and gently swayed. With my hands buried in its folds I used it to absorb my tears and cover my mouth to prevent the screams that bubble up in my throat. Without warning my ears once again picked up the faint stirrings of sound. It wasn’t the typical NICU sounds though. It was music. Christmas music.

The soft sound of Amy Grant singing, Breath of Heaven broke through the mind-numbing silence that had engulfed me.  The lyrics, “I am waiting in a silent prayer. I am frightened by the load I bear. In a world as cold as stone must I walk this path alone?”, became the water my parched soul desperately needed. My spirit hungrily devoured the soothing melody, with the words “Help me be strong, help me be, help me” becoming my silent plea to a God, whose plan was terribly confusing and painful. Then it happened.

“Breath of Heaven, hold me together. Be forever near me, breath of Heaven. Breath of Heaven, lighten my darkness pour over me Your holiness, for You are holy. Breath of Heaven”. As the haunting melody played DJ began to calm. As he too, found comfort in the music, the alarming machines around quieted., signaling the crisis was over.

Those days of DJ relying on a machine to breath for him are long gone. The years from then to now have been marked with unspeakable joy and also great turmoil. Yet, even at the height of the worst days softly singing that song to him manged to still his soul. Thirteen years later we look back and know that DJ’s life wasn’t saved in one day by a single breath of heaven. But like us all, DJ’s life is sustained by the many breaths of heaven that have filled his days since.

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