So we begin...this story has been rattling around in my heart for eleven years. I have been putting pen to paper for the last three years and these are the words that have come through tears and many, many sleepless nights. I am not perfect, far from it as you will soon see. I am wounded, my marriage has been to hell and back, my parenting leaves a lot to be desired and through it all, my faith has been tested by fire. Some days I love the Lord, others we are NOT on speaking terms. I curse like a sailor and can be irreverent and disrespectful about things that should garner nothing but love and respect. The grammar will be atrocious and the formatting sometimes crazy. But the truth is the truth.
You come to this blog expecting encouragement, laughter, support and strength. You only see who I am NOW, today, this moment. You don't see the evolution of how God has redeemed my life, formed my faith, tested it by fire and brought me and my family to the foot of the cross and at peace with Him.
It wasn't always like that. Being totally hones there is still a struggle in my heart on the really hard days, to trust HIM completely with my life, my daughter's life, my marriage, my son, all of it.
You see I had a people pleasing problem. That's where the words I wrote in this space two days ago came from. A deep dark place in my heart. It has a name.
Despair.
It wasn't the first time. I pray it's the last...time will tell...
I NEEDED you to like me and if you read these words, my words, you may decide that's not something you could do. Pathetic...yes, I know.
I have lived in fear for a long time, not really ready to let the world see my story, my journey, every bad choice, every moment of indecision and lack of faith that has at times overwhelmed me and my family as we have stumbled through life's twists and turns.
I cannot tell Courtney's story, that is is for her alone. However, I can tell you how this child has changed my story and impacted the world around her. I can tell you how God moves in the light and shines it so brightly sometimes in the midst of the very hard places, that in time warmth penetrates, bring comfort from the pain.
I was reminded yesterday, that life is meant to be lived in faith not fear. So no more excuses, no more fear...and for the next few weeks, no more recipes or book reviews. It is time. This is the story of my heart that God has redeemed with His love and grace. He did not tell me to wait for a book contract to share this story. He did not tell me to keep it to myself. He told me to spread HOPE for He makes all things new.
I don't not seek or want your pity. I do not wish to cause scandal or harm to anyone who reads these words. They have been pulled from my heart and are now where God asked me to place them. With you...
So by HIS grace, I pray the story that I will share on this blog for the next several weeks will encourage you to know without a doubt that God is good...ALL the time. We are ALL new creation in Him.
Mary
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Prologue ~
November 1, 2004
“I hate hospitals, “ my husband muttered as I finished folding our daughters clothing she had worn into the hospital, placing it neatly into the duffle bag I had brought with me.
“I know Jerry. Try not to scare the nurses this time, would you.” I replied.
“I hate hospitals.” he repeated.
Courtney looked so pale laying quietly on the bed. I bent over and kissed her gently on the forehead as another tear slipped free and landed on her cheek, making her blink in surprise. As I wiped it away with my finger, I continued my silent barrage of prayers begging God to protect my girl, keep her safe and guide the neurosurgeons hands.
Neurosurgery?
Seriously? How did we end up here?
We had reached the end of the road. There were no other drugs, no other treatments that would stop the seizures that continued to ravage my daughter, stealing away bits and pieces of her every time. Twelve years, three to four seizures every day, ravaging her body, taking her breath from her, stopping her opportunity for learning and proper development. We had no choice. This procedure was all we had left.
Courtney’s blonde hair was trying to escape the yellow shower cap that strained to contain all her Shirley Temple curls. Wires peaked out from under her hospital gown that was covered with little grey hippos. Her left hand rested on a splint board wrapped with gauze to keep her from pulling out her IV. Medicine was already dripping into the tube, delivering some pain relief and a sleep agent. The blood pressure cuff on her upper arm inflated and squeezed every five minutes. Her heartbeat was steady and calm if the blips on the machine overhead were to be believed.
My heart was racing. I was glad no one wanted to take my blood pressure at that moment.
Jerry was holding her right hand and started singing “You Are My Sunshine” in that low baritone I had loved for sixteen years. Courtney was calm and for the moment had a sweet smile on her face. She was the only one in the room smiling.
Today was going to change the rest of her life. At least that’s what the doctors hoped. In a matter of minutes the surgical team would be wheeling my daughter back into surgery where they would place a Vegal Nerve Stimulator in her chest connecting the wires to the base of her brain. They had explained once more in Pre-Op that it was like a pace maker for the brain helping to regulate the electrical activity of the brain to try and keep her seizures under control. There would be an electric current sent to the brain every few minutes lasting anywhere from 10 − 40 seconds. There would be a wire wound around her neck on the inside connecting to the vagus at the base of her brain.
There were risks of course.
One seizure under anesthesia and Courtney could aspirate.
One slip of the surgeon’s hand at the wrong time and game over, irreparable nerve damage.
“Nothing is for certain with a fragile child like Courtney but I am very confident that everything will be fine.” the surgeon had assured us.
How many different doctors had told us that over the years? I thought.
“We hope for the best.” He said in his bold confident voice. I suppose you want the man that would be connecting electrodes to nerves at the base of your daughters brain in a matter of minutes to be that confident. He was going to change our world or so he said.
I didn’t know what to think anymore. This beautiful child had fought so bravely for twelve years and still those damm seizures would come and rob her once more of her ability to function. I was so tired of this life…I could only imagine how tired she was.
We just needed to get through the surgery. It will get better. It has to get better.
The risks were fresh in my mind from our early morning briefing. I prayed for the surgeons steady hand, for Courtney’s steady heartbeat, for a clean OR field, no complications, no mistakes.
Please God no more mistakes!
“It’s time.”
My head snapped up and I took a deep breath. The perky nurse dressed in smiley face scrubs pulled back the curtain and picked up the clip board on the edge of Courtney’s bed.
“Already?” My voice was shaking.
How do you say goodbye? How do you let her go not knowing what she will be after all is said and done? How do I do this? Just let her go not knowing if I will get her back?
I looked up at Jerry, tears were in his eyes.
He smiled weakly at me then bent down over our now sleeping daughter and whispered “I love you” and “Be strong” into her ear. He kissed her one last time and reached for me to do the same.
My heart pounded so loud I could hear it. Panic rose in my throat. I wanted to scream at the top of my lungs NO!! You can’t have her. I can’t do this. I’m too scared. What if the surgeon’s hand slips? What if she has a seizure on the table? What of I look up in the waiting room and see the doc come forward and say “I’m sorry Mrs. Lenaburg, we did all we could do.”
I NEVER want to hear those words. NEVER!!
“Mom you need to give her kisses the surgeon is waiting.” Smiley Face Nurse said gently. “She’s going to be fine. We do this surgery all the time. You’ll see her in recovery in a few hours. She’ll be right as rain.”
My mind raced as fast as my heart.
My hands shook and I had a running dialogue going in my head.
The surgeon could wait one more dam minute. Right as rain? Seriously lady, you and your freaky smiley faces are just too much. The surgeons have never done this surgery on MY daughter before. She’s fragile and she’s precious. Don’t you understand if anything happens to her I will not survive it?
Jerry led me to the head of the bed like a small child. He squeezed my hand one more time and whispered “God’s got this, Mar. Just let her go. He’s got her. You can do it, come on.”
Everything appeared in slow motion from that moment on.
I lowered my head and kissed her a thousand times all over her face.
“ I love you my sweet sunshine,” I whispered in her ear. “You are beautiful and the strongest girl I know. I am so honored to be your Mamma. NO matter what happens today, your daddy and I are going to love you forever and take care of you. Your big brother is waiting at home, ready to read you Fox in Sox. All you have to do was get through this surgery. God is with you my sweet. Our Blessed Lady is singing to you. Can you hear her? Mamma can. Just keep listening Court. She will not leave your side."
My tears made a little puddle on her pillow. I wasn’t sure I could stop crying at this point. I was about 30 seconds from losing it completely.
“I love you so much, Court. Daddy and I will be right here when you wake up. I promise.” More kisses and another hug. I did not want to let her go.
The nurse squeezed my shoulder.
“Mom, I promise we will take good care of her. See you in a bit.”
Labels: Courtney's World, My Crazy Life, My Story