Posted in Faith, Healthcare, parenting, The DJ Journey

20 Years of Loving DJ

A doctor, we’ll call Dr. S, said awful things about DJ. Things no one should ever say about a child let alone a patient. She felt compelled to perversely tell me how inadequate my baby was. She ended with words I never let permeate my heart. “He’s a blob. He’ll always be a blob. That’s all he’ll ever be.” Dr. S lives today because my husband physically restrained me long enough for her to scuttle from the hospital room never to be seen again.

Each candle added to DJ’s birthday cake serves as a tangible reminder of an invisible faith manifested through the most unlikely of people and circumstances. So, on his 20th birthday, I want to bring Dr. S up to speed on her dire predictions. And remind her that while she looked into this little face and saw doom and hopelessness I saw potential, love, and hope incarnate.  382819_2066102232110_512707139_n

DJ demands personal growth. You can’t be too cowardly to look boldly within. You must forget what you want, expect, and plan. Me holding onto expectations and comparing us to others propelled us nowhere. So, when public school and DJ weren’t a love match I became what I never wanted to be – a teacher! No offense to teachers. I just never fancied being one. As a little girl, I was the only one on our street who preferred being the student when we played school.

It took us a couple of years to find our groove but DJ thrived in homeschool. Shock to me, but I enjoyed teaching him. The fuel to higher learning is individualization. Crafting lessons to his needs, incorporating sensory-rich field trips, and teaching by a grasp of subject matter rather than a perceived grade level, proved to be the ladder to his higher learning window.

 

With education came books. Books taught me as much about DJ as they did him about the world. Through books, DJ told me how he loved Kentucky history and opened a path for me into his nonverbal world.

 

DJ views history as a learning tool. Dr. S viewed history, at least medical history, as an inescapable future. Dr. S’s encapsulating DJ into a sports-less world only made us determined to try it all. It should be mentioned that Dr. S did not include sack racing in her list of sports DJ couldn’t do. DJ and his Daddy just threw that in as a show-off manner for Aunt Neen and Maggie.

 

He also learned to swim, ride a bike, and even find his way around a kitchen.

 

It didn’t take long to figure out that the best things for DJ, cost us the most. Giving DJ basic life experiences we all take for granted, means expending physical stamina, mental stress, and emotional shifting. Yet, it’s menial compared to love. The more experiences DJ has the more he learns. The more he learns the more he grows. The more he grows the more he overcomes. And the more he overcomes the more hope he infuses into our crazy world. So, we do the things Dr. S said couldn’t be done;  eating out, camping, peaceful public outings, air travel, and even a journey across the Purple People Bridge.

 

It all matters; dressing up and turning his wagon into part of his Halloween costume, riding a scooter board, carving a pumpkin, reaching higher for the elusive Easter egg, training a service dog for him, building therapy tools like a platform swing for him to chill on, it’s all relative. Nothing is too much. Dr. S’s medical knowledge may have been correct. She didn’t factor in how life-altering unadulterated love is.

 

Of all Dr. S’s wrongs, her greatest was predicting I’d never hear I love you from DJ. Granted, I’ve never heard it verbally. But what I’ve learned is that the deepest of love isn’t said, it’s shown. And no one shows his love better than the little boy who supposedly never could.

 

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

Even Wonder Women Needs An Oxygen Mask

Moms of special needs children tend to downplay or outright ignore their health. The needs of the child are so great we master the art of caring for them even when our needs are greater. We become so adept at neglecting ourselves for our child we do it without thought. It’s not an attention seeking action it’s survival mode.

Several months ago, I had the unsettling notion something was not right with my health. At first, I had no symptoms. By the time the symptoms arrived, I was in the middle of writing, directing, and choreographing our church Easter play.  I love working with the kids and doing dramas.

This one was extra special because it was the first one in which DJ participated.

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In God’s providence scheduling conflicts led to the play being done a week before Easter.  Any other day and the play would have been canceled.

By performance night, my body screamed for attention.  My health refused to be ignored any longer.  In a span of about 36 hours, I went from feeling like I might have the flu to unable to get out of bed. IMG_9242

What began as me ignoring a typical kidney infection morphed into a full-blown medical crisis.  Words like platelets, blood cancer, leukemia, heart attack, stroke, and premature death engulfed my conversations.

Restricted from any activity, I had ample time to contemplate how I landed on this crudely constructed road.  How did I become so violently ill?  It didn’t just happen.  The answer was clear.  I sacrificed my health in the name of being a strong, nurturing mother giving all and taking nothing for myself. Then came the day when the tatters of my Wonder Woman mentality were strewn about my sick bed.  Everything changed.

There is a reason airline stewardess instruct us that in the event of an emergency we put our oxygen mask on before putting one on our child.  On the surface, the command contradicts the mommy code of putting the child first.  However, the point on the plane should be the same in our everyday lives.  If we do not take care of ourselves, we will be unable to care for our child.   Ignoring our health increases the risk of prolonging or intensifying our illness.  By seeking medical care at the first sign of illness we significantly increase our chances of surviving the monster seeking to destroy us.

I’ve not yet fully recovered.  Don’t know I ever will.

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What I do know is that for ever how many days God gives me upon this earth, I want to encourage others through my mistakes and accomplishments.  So, get that mole checked, stop making excuses for the lump in your breast, don’t assume it is a cold that won’t go away and get a physical every year.  We take the best care of our kids when we take care of us.  Cause to soar as high as she does, even Wonder Woman needs oxygen.

An earlier version of this blog appeared in the Winchester Sun.

Posted in parenting, Special Needs Kids, The DJ Journey

Special Needs Dancing

www.youtube.com/watch

He May be nonverbal but he knows how to express himself. People wanted him to have a YouTube channel. So, here it is. The DJ Journey. Watch, like, subscribe, & share the silliness of DJ.

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 The DJ Journey

The Glorious First Sunrise -The DJ Journey 2

“Your baby may not survive the night. So, I will sleep on a couch in the NICU so I can be close to him when he needs me,” the neonatologist said to us.

My husband, Steve, and I glanced at one another. I had just given birth to our son DJ, nearly two months premature. Doctors and nurses immediately whisked him away to the neonatal intensive care unit. NICU is where only the sickest babies go. Although the NICU staff is the most highly skilled, it is not a place you want your child to be. If the neonatologist thought DJ wouldn’t survive the situation was about as bad as it could get.

The doctor stood obviously waiting for our response. When none came he said gently, “Do you understand what I just said?” He received our nod and continued.  “Your son will not live to see his first sunrise. Do you understand?” He wasn’t being cruel. His voice was gentle and cracking a bit with emotion from the blow he was delivering. I think he thought we were in a state of shock and not comprehending the circumstances. He wanted to make himself perfectly clear and prepare us as best he could.

“I understand what you’re saying. But that’s not what our God said.” My voice was as gentle as his. But unlike him, I lacked any inflection or hesitation.

The look which crossed the doctor’s face actually made me pity him for a moment. Here he was, with all his medical training, doing the worst possible thing (trying to prepare parents for the death of their newborn) and here we were not responding as we should. Our response was that our unseen, unheard, God said the doctor was wrong.  He looked quite desperately between Steve and me as if hoping one of us would come to our senses. It took less than a heartbeat for him to see that Steve agreed 100% with me. With nothing more to say, he turned and left.

374888_2066195994454_259002162_nAs the door closed behind him Steve and I looked at each other and grinned. We knew the doctor thought we were crazy. But we knew what we knew. And what we knew was that we had seen far too many miracles concerning DJ for him to die a few hours after birth. God was doing something well beyond our comprehension and unlike the many trials that would come later. This time God’s word was crystal clear.

The doctor filtered in and out of my hospital room all through the night providing updates. There were a couple of moments that scared the medical staff as DJ seemed to decline only to rally again. He did nothing to improve his status in the NICU except continue to have a live. The only change was his steadfast defiance of his death sentence. The medical staff was at a loss to explain it.

When the sun rose high in the sky on December 8, 1999, the exhausted doctor made his way into our room. I was sitting up in my bed beaming a thousand watt smile at him, for DJ was indeed seeing his first of many sunrises.

The doctor stared at us for a moment as if trying to understand us before he spoke. “Your son is alive. I’m not sure how or how long he will stay that way.” He rubbed his forehead, still trying to shake off his sleep deprivation and lack of understanding.  “But for now he is alive.” Despite all his expertise, it was all he could say.

It was enough. Later that day I sat beside my very sick three-pound miracle and had to smile. DJ was a mess. He was wrinkly and angry at being born too soon. There was a tube in every orifice possible. Breathing was a monumental chore for him. The tiny baby who had only the word of God in his favor was making fools of well-educated men. But it wasn’t for naught.

On DJ’s first birthday we received a card from that neonatologist. In the card, he 388336_2065986549218_990363180_nexplained that he too was a Christian. He wasn’t aware how far he’d strayed from his faith until DJ was born. The doctor recounted not only that first night and our unshakable faith about what God had said to us but other occasions when DJ declined and we still rejected their prognosis. He informed us that he never expected DJ to go home from the hospital but our faith had him hoping for a miracle.

Once the miracle arrived and DJ went home, the good doctor made a promise to himself. To our surprise, he said he would never again factor out God. No more would he go into a hospital room and pronounce a death sentence over a baby. His patients would know everything his medical training permitted, but he would always allow room for God to work because a tiny infant named DJ taught him to.

What the doctor still doesn’t know is that our faith in the message from God about DJ’s birth wasn’t easily accepted. No, far from it. We had seven months of training, seven months of fear, and seven months of doubt that led us to this beautiful conclusion. And what we didn’t know at that moment, was that this excruciatingly painful Merry-Go-Round of faith was only just beginning.

Posted in The DJ Journey

Born Into Infamy -The DJ Journey 1

It all began in joyfully ignorant bliss. I was ripe with the sweet promises of expectancy. Having been pregnant three times before I knew it would be difficult and likely end in premature birth due to my rare blood disorder. Yet, with all that history I was still vastly unprepared for how much more complicated and painful this pregnancy would be. There I stood in all my knowledgeable ignorance.

I vividly recall the day, sitting on my bed talking to my best friend, Janeen, and my husband, Steve. It was a beautiful spring day and I was approximately six weeks into my surprise pregnancy. Suddenly, clarity rang like a bell. Without a doubt, I knew the due date of my baby. It would be December 7, Pearl Harbor Day. I immediately voiced this to Janeen, or Neen as I call her, and Steve. Both of them immediately rejected the idea.

I would only be entering my third trimester at that point. December would be far too early they cried.  Though I agreed it was early I dismissed their concerns.  I even went so far as to chastise them for leaving out the “God factor.”  Prior to accepting Christ, I had given birth to two premature babies. Aside, from having Asperger’s Syndrome, my oldest son was healthy and the youngest was born perfectly fine. “If they are doing so well after being born prematurely before I was a Christian, imagine how much better this baby will be now that I have Christ,” I declared.

I am now painfully aware of what a stupid statement that was. I don’t know if I intentionally blocked out the fact that I had miscarried while being a Christian or if it simply didn’t occur to me at the time. Either way, it was a ridiculous statement. I had already had one lesson on the calamity of putting words in God’s mouth so you would think I would be smarter enough to know better.  I was not.

I jotted down in my little pocket calendar that the baby would be born December 7, 1999, because I wanted to prove to Neen and Steve later that I was indeed right. Turns out I wouldn’t need that calendar to prove anything to anyone. The dramatic events of my pregnancy and the baby’s birth unfolded in such a way that no evidence was needed. The fingerprints of God were clearly visible.

 

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Neen & me at my baby shower

 

I was admitted to the hospital the day after Thanksgiving, where I would remain until the baby was born. The plan was to use an epidural to keep me numb from the waist down in order to control the pain and ween me off of the narcotic pain medication I had been taking. My blood disorder is similar to sickle cell anemia in that it results in painful “crisis” episodes when I’m pregnant. Because epidurals are only administered by an anesthesiologist the head of that department and my high-risk pregnancy specialist, Dr. Barton met with Steve and me several times. It was a simple plan creating the optimal birth environment and we had no reason to believe it wouldn’t work. But we weren’t taking into consideration the “human factor.”

In a reverse of Mary and Joseph being called to Bethlem for the birth of Jesus,  my doctors were simultaneously called out of town prior to the birth of my baby. Not to worry they told me. Both doctors had reviewed the plan with their staff and everyone knew what to do. Periodically, the anesthesiologist would be required to “dose the epidural.” That consisted of walking into my room and administering an extra bag of numbing medication into the needle placed in my back. The purpose was to control my pain while slowly phasing out the pain medication. The last thing we wanted was a baby born under narcotic use.

My days at the hospital were regimented and boring. Though we had no reason to suspect it, this day would be anything but routine. Steve, who was a disc jockey on a Christian radio station, came to the hospital to stay with me after he got off work and checked in on our other boys. No cause for alarm. By the time evening rolled around I was in need of an epidural dose. That was when the trouble began.

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Dr. John Barton

 

My nurse called the on-call anesthesiologist. After a significant amount of time passed and he failed to show she called him again. He informed her he was on his way. Each tick of the clock sent the pain snowballing toward uncontrollable. A third call was made. This time my nurse assured me he would come because he was needed for another patient having a C-section. In order to get to her, he had to walk right past my door.

I’ve often wondered what would have happened had the door to my room be open. It’s a wondering without a resolution because the door was shut so Steve and I never saw him. My nurse saw him, though. She watched him head toward my room and assumed he dosed the epidural. She was completely taken aback when she entered my room and found me in the throes of pain so significant it makes childbirth feel like a stroll through the park.

Since the anesthesiologist had come and gone the nurse called him again.  For reasons I will never understand, he flat refused to come back. With that refusal, chaos ensued. Steve was livid, the nurse was near tears, hospital administrators were called in and I was screaming in pain. It was 11:45 pm on December 6, 1999.

The intense pain set off contractions. There was no choice but to administer the narcotic pain medication. It was an excruciatingly long night. The morning of December 7 found Dr. Barton at my bedside. He gave me the grim news that the baby was not doing well and showing signs of marked stress. It was now safer for the baby to be outside my body. Daniel James Graves (DJ), made his entrance into the world amid our very well-made plans which had been laid waste by a rogue doctor. It was the worst possible circumstances. It was a day already living in national infamy and would now do so for me personally.

This is the first installment of a series of posts titled The DJ Journey. The posts will chronicle the amazing but often pain-riddled life of raising my special needs son. Follow my blog to get email notifications when each episode is posted.