I want to live more than I want to be in heaven

This story begins, like many of my blog posts, with me worshiping on my knees. My early morning prayer on that Sunday morning was that I would encounter God during our church service, so I was intently worshiping and praying.  I was not thinking about where I would eat lunch!  I did not have any particular prayer requests or pressing needs, so I focused my mind and simply praised God.

And then, out of nowhere, a thought bubbled up in my spirit. It caught me by surprise. From deep within my spirit, this desire voiced itself:

“I want to live.”

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What can you do when you can’t pray?

I sat in the CVS Pharmacy parking lot.  Here I was, again.  This time I was not picking up a medication for me for but one of my children.  My stomach churned.  I wanted to be at home, curled up under my electric blanket, safe from heavy cares and concerns.  But my child was sick. Not with a cold, or pink eye, or an ear infection, but with a chronic disease.  It was no longer in remission but it had reared its ugly head again.

When faced with the disturbing symptoms, I did not fall to my knees in prayer.  I watched Netflix.  Every time I tried to pray, I was unsuccessful.  I could not think about it.  Facing reality was too painful.  Thinking of the disease wracking my child’s body broke my heart.  Over and over and over.  Every time I would think about it, I was crushed.

So I watched Netflix.  And read romance novels. And went shopping.  Because my fantasy world did not hurt as much as reality.

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After grief, I have found a tenuous peace

This past September, I was dangerously close to walking away from my faith.  I was SO angry at God, railing at Him because my son was sick.  Again.  Not just a cold or a stomach virus, but sick.  The kind that involved doctor’s offices, recurring labs, scary medications, and procedures.  And I was so ticked at God for allowing this to happen.  I needed someone to blame, and God was at the center of my bullseye.

At that point I was scared.  I was scared that if something worse happened to me or those I love, I could turn my back on God and walk away from Him forever.  FOREVER.  I understood the anger and bitterness that many feel when they experience devastating, heart-breaking life events.  And it scared me that I would consider walking away from the Heavenly Father that I loved so much.  I was (this) close to just being done with God.

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My infant son was loved every day of his too short life

This is a guest post by someone who has  known me since I was 18 years old…Kimberly Potter, a friend from college and a CelebratingWeakness.com reader.  Her story is heart-wrenching but also full of hope.  It is a privilege to share Kimberly’s guest post with you today.

The journey for me to become pregnant was long, involved, and costly on many levels.  However, when my husband and I learned I was pregnant, it was all worth it.  While over the moon happy about finally becoming a mother, we went in for the 18 week ultrasound to learn we were expecting a son.  Only moments after seeing his little feet and hands for the first time and hearing his heartbeat, the doctor informed us it was highly likely our son would have a rare genetic disorder we had never heard of, tuberous sclerosis (TS).  TS can impact people differently, ranging from minor skin adhesions to significant developmental delays and seizures.

We prayed for our then unnamed son, prayed that he would not have the condition, prayed he would be spared, prayed he would be healed.  I believed God could do all of this. I also cried out to God.  Really?  After all of this?  Why?

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She’s not there, she’s in my heart

Our family has never taken exotic vacations.  Probably the most exciting place we have ever taken our children is Washington, DC.  Most of our vacations are to visit family, either in the mountains of North Carolina, the coast of Georgia, or in the bulging metropolis of Atlanta.  We find that taking vacations to visit family suits us just fine.

One of our last trips to Atlanta was unfortunately for a funeral.  My mother-in-law, Jane, had died suddenly from a stoke.  She was working in her garden one fine spring day, and with Jesus the next.  So that unplanned trip to Atlanta was filled with joy and anguish, memories and tears.

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Your crushed spirit attracts God like a magnet

I was alone at Duke Children’s Hospital.  My 4 year old son had been whisked off to a private room and I was left alone with the nurse.  She delivered the devastating news that the colonoscopy had revealed that my son had Crohn’s Disease.  And then, in a moment that I will never forget, she went on to describe to me what his life would be like with this ravaging disease.  She described side effects of medications, how his appearance would be changed, and even how the hairs on his head would respond.  And then she handed me a little pamphlet and left me alone in the room.

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Duke Children’s Hospital

Tears flooded my eyes as the gravity of the diagnosis settled upon me.  My precious son.  My only son.  A devastating disease and a precarious future.

I was crushed.

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Unexpected tears during a graveside chat

I stood by my friend’s grave on a warm winter day. I could hear the birds twittering in the trees and the faint roar of the cars from the nearby road. She has been gone for ten years and I visit annually to bring fresh flowers and to update her on the children that she did not see grow up. I shared with her how that little six year old girl is now a 16 year old woman with a boyfriend.   I told with her that the bright eight year old boy with autism was now 18. And as I shared with her the amazing news he was now driving and that he attends college on a scholarship, it was as if I untapped a well of emotion.  Unexpected tears burst forth.  I sobbed at her graveside as I shared how God had done the miraculous with that sweet autistic boy.

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My Advice to You: It’s Okay to Grieve

Recently I was asked to help a college student with a project for her class.  She is studying Early Childhood Education at ECU and she needed to interview a family with a child who had a disability.  Fifteen years ago my son was diagnosed with autism.  We are that family.

Most of the initial questions were routine.  How did you know that your son had autism?  What services did he receive in school?  How old was he when he was diagnosed? And then she asked one that really made me think.

What advice would you give other parents who have children with disabilities?

I sat in silence for a few minutes and searched my heart and mind for the right answer.

My answer was simple, only four words.

It’s okay to grieve.  

My Advice to You: It's Okay to Grieve

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Four powerful words that scream “I love you” (Part 1)

I hung up the phone and hung my head between my shoulders.  I stumbled my way through the kitchen sobbing uncontrollably.  My daughter came up to me and embraced me in a hug.  “What’s wrong?” she asked.

My father had just called to tell me that my beloved grandmother had died.  This was a women that I spent many, many weekends with when I was growing up.  She lived on a farm and I have many happy memories of being with her there.

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I released my daughter from the hug and trudged along to tell my husband the bad news.  I walked past my daughter’s 18 year old boyfriend, who was sitting on the couch.  He looked up into my puffy, red eyes and spoke four powerful words that scream, “I love you.”

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