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 Beauty For Ashes, The History of Me

Physical vs Emotional Pain

I have always had a myriad of health issues.  Within hours of my birth doctors discovered I had elliptocytosis, a blood disorder in which my red blood cells are half moon shaped rather than oval.  Since the condition is rare and the majority of sufferers have no symptoms little is known about it.  There is more information available now than in 1969 but it is still cloaked in a great deal of mystery.  Mystery that created a lot of heartache for me over the years.

Besides elliptocytosis, I was also born with partial nerve deafness.  My ears became a constant source of illness.  According to my mother, it was rare for me to go a month and not have double ear infections.  Back then there were no ear tubes to help decrease the infections nor were there hearing aids to help improve nerve deafness.  Like elliptocytosis, it was just something with which I had to learn to live.

In addition to those issues, I had trauma induced stuttering, requiring six years of speech therapy.  The trauma was evoked from the terror I had of my father.  My Dad frequently launched into screaming tirades if I was talking to my Mom and he wanted to say something.  That screaming often devolved into physical violence.  Those events were so common that I developed a fear of speaking to anyone.  The first memory of my life involves one such event.

I was three-years-old.  My Mom was cooking dinner, and I was standing in a chair next to her “helping.”  I was chatting away about the dandelions I had plucked from our yard to make a necklace for her.  Daddy came in and as was his habit poured himself a drink the moment he walked through the door.  I suppose he attempted to say something but if Mom heard him I saw no indication of it.  I certainly didn’t hear him.  All I heard was glass shattering against the wall.

The sound caused me to jump and topple from the chair.  It took me a moment to figure out Daddy had hurled his drink across the room.  In horror, I watched the amber liquid slide down the wall.  For the briefest of moments, the only sound was my own heartbeat.  I could not only hear it but feel it in my ears.  Then Daddy erupted.  He began screaming about “that damn kid” who wouldn’t “shut the hell up.”  On and one he went cussing and never calling me by name.

A chill swept over me as Mom moved me behind her.  But that put me in a corner.  With only the kitchen cabinets behind me and Daddy between me and the door, I was cut off from any escape route.  Brenda, my protector, the big sister I looked up to, wasn’t home.  I was on my own.  I could do no more than stand there and watch as my Dad grabbed Mom by her hair, dragged her across the floor and flung her like a rag doll out the back door.  I opened my mouth to scream but no sound came out.  In that instant, I lost my ability to effectively communicate with anyone outside my family and friends.  And it would be many years before it would be recovered.

It wasn’t long after that event that I had an urgent physical ailment to accompany my traumatic one.  My elliptocytosis was of the most severe form.  I had far more abnormal blood cells than I did normal and they were accumulating in my spleen.  My spleen was so enlarged that it rupturing was a certainty.  My life was in danger and my spleen had to be removed immediately.

I recall more about the incident with Daddy than I do the drama surrounding my health.  One clear memory is of Mom’s face when the doctor told her they would need to cut me from bellybutton to backbone.  It was something I heard her say several times but didn’t fully grasp.  I was far more concerned about having to remove my panties before going into surgery.  Mom and I were at the hospital with totally different mindsets.  She was on the phone crying about me being cut half in two and I was crying about losing my panties.  Finally, the nurses agreed to let me keep my panties on until I was under anesthesia.

I have two clear memories when I awoke.  The first was that the searing pain in my side made it clear why Mom was worried about my incision.  The second was that no one had put my panties back on.  They were hanging at the end of my bed and I wanted them.  For years Mom told the story of how I had complications during surgery and her first sign that I would be fine came when I asked for my panties.

After a week or so in the hospital, I was discharged.  Once at home, I learned what Brenda already knew; Daddy was gone.  He had demanded Mom leave me at the hospital and come home.  When she refused, he got himself a girlfriend and moved in with her.  Despite Brenda only being 11 years old, he left her alone then called to tell her to inform Mom and me.

Later, as adults, Brenda would tell me how painful that was for her.  She said that even though she knew I couldn’t help being sick she still resented me and that somehow she blamed me more than Daddy.  As for me, I thought the surgical pain and having my panties removed was well worth the price of getting rid of Daddy.

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