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 Faith, Healthcare, In The News, Politics

What Prince Wants Us To Talk About

Maybe it’s because my most tumultuous years were spent in the 80’s. Maybe it’s because my friend and I sang little blue Chevette instead of Little Red Corvette because that’s what she drove. Or perhaps it’s the fact that When Doves Cry perfectly described an abusive relationship I was in. Or maybe it’s because I feel that Purple Rain described the difficult relationship I had with my mother and would have been more relevant at her funeral that the Christian songs selected.  Perhaps it’s because I wish Prince wouldn’t have let the elevator bring him down and he’d punched a higher floor, just like he taught me to do.  But if I’m perfectly honest it’s likely that if  he did indeed die of a drug overdose it could have  been me any number of times. Whatever the reason, Prince’s death has left me with a myriad of unwanted emotions.

Rather than talk about his fame, fortune, and iconic status I want to talk about what I truly believe Prince would want us to be talking about – chronic pain. His death is shaping up to point to a Percocet overdose. How can that be when he spent the majority of his life living clean, no drugs or alcohol, citing his faith as the reason? Something happened to Prince that was stronger than his faith. I can easily imagine the mental battles he had with himself before his death. It makes me shudder because I understand them.

I don’t classify Prince as just another drug addicted celebrity. No, understanding his faith, the life he lived for the majority and his hip replacement leave me thinking Prince wanted only what the majority of people take for granted; a life that is pain-free. I know this because I live with chronic pain. It’s like a migraine – no one understands it until they have endured it.  It’s a constant battle between what’s right, what’s wrong, where faith will take you and the overwhelming desire to simply not hurt anymore.

Chronic pain is a silent thief of life, mental balance and sometimes even faith. It’s the devil itself, come to steal and maim. It’s the unrecognizable disability and more needs to be done to address it. How many must die before we stand up and say ENOUGH? What those in chronic pain need the most is a physician daring enough to try new procedures, willing to prescribe pain medication if needed but diligent enough to micromanage those medications, regardless of who the patient is. We need doctors committed to patients, not revenue or government. We need a strong government committed to doctors and patients. Where are these men and women of courage?

More than his musical talent Prince should be remembered for shining a light on chronic pain. He should not be thought less of if his death is due to a drug overdose. Instead,it should inspire conversation in government, the medical community and ordinary citizens about what can be done about chronic pain. How do we help and protect the silently suffering?  How do we simultaneously remove the stigma of narcotic pain management while preventing those in need from abusing? It’s a conversation worth having.

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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.