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A Mother's Perspective

When I was pregnant with Mandy, I would sometimes think.....what if she catches a cold, bumps her head or has an ear ache? Will we know what to do? Never, in my wildest dreams could I have imagined she would suffer the medical maladies she has. Her life has been consumed with one life threatening illness after another. We searched for 23 years for a reason why, but no one, anywhere could tell us why.

Mandy was born on June 18, 1981 a perfect baby with 10 fingers and 10 toes. But just a few, short months later our nightmare, of what would soon become our life, began.

Speed and I have been told 9 times over the years that we should come in to Mandy's hospital room and say goodbye. Her vital signs were dropping, her organs were failing or she was simply too weak and sick to fight to live. I've thought on many occasions that there were no more tears inside of me. That another piece of my heart couldn't break. But each and every time she faced an illness, God provided her a miracle and us the strength and courage we needed to mentally and physically survive.  

We were young when Mandy was born. We had been married for 2 years, I was 20 and Speed, 21. Our lives quickly became consumed with learning to live a life that we had no idea of how to live. We truly grew into adult hood learning to be the parents of a child caught in a medical mystery.

We had never heard of Spinal Meningitis. But after almost losing her to the illness 3 times over a one year period, we became very knowledgeable. This illness is a mad creature. Causing her to suffer seizures so horrible that we were assured she had become a vegetable, blind and deaf. "But really those things are irrelevant because she probably won't live" is what we were told time and time again. And our whirlwind began.

She suffered a stroke. She was paralyzed, couldn't speak and suffered in ways that I can't allow myself to think about.

She was critically ill in ICU. We hadn't been able to touch her for days. Her prognosis was grim, but because a nurse felt compassion for our breaking hearts, she allowed us to hold her. I watched as Speed took her little body in his arms and held her as if she were giving him oxygen to breath. Suddenly our almost perfect moment was taken away by a violent seizure. She went into convulsions, her body shook like nothing I'd ever seen, her eyes rolled back in her head and she began to choke. 

We've held down her quivering, terrified arms and legs as a nurse or doctor would search for a home for an IV to be inserted or to draw blood. Once it took 46 sticks to get one vile of blood. I knew my heart would never recover from the intensity, memory and pure exhaustion of it, but I prayed that she would.

I've sat in more doctors office's and listened to more horrible news than I thought was possible. "Your daughter is a ticking time bomb" is what we were told more often than you can imagine.

As I watched from the hallway through the tiny glass windows she began to have an allergic reaction to a dye that flowed through an IV for a CAT scan and suddenly she was losing the fight to breath. I screamed at the top of my lungs and beat the heavy, locked door until my hand bruised trying to get the attention of someone conducting the test to look at her. 

For two solid years we drove her two times a week and handed her over to a lab technician who would then draw her blood for it to be studied for a possible immune deficiency diagnosis. After a while, she had no veins left to stick, so they moved to her neck, legs and feet.

I have collapsed more than once as the operating doors closed in front of me watching them wheel her into the operating room for yet another operation that they hoped would save her life.

Doctors told us to come in and see her before she was air lifted to another hospital for a life saving treatment. I recognized her by the polish I had painted on her little fingers and toes the night before. She was now swollen and disfigured from the toxins that were filling her body.

What we thought were the sniffles turned out to be a mass that encompassed all four sinus glands, had eaten the bone away in the bridge of her nose and forked in different directions at the point of her forehead. The other end of the mass had no where to go, and began to grow out her nose. This is when the stuffy nose started. The surgeon felt confident this was a mass of cancer that was almost touching her brain. She was given a week to live.

I stood in the doorway of a hospital room as Speed turned to me and said, "you need to prepare yourself Lisa, they are going to have to amputate her leg." I slapped him and told him in no uncertain terms not to ever say anything like that to me again. His words made my mind spin and my chest heavy. While it seemed like an unimaginable nightmare, he was right.  

Four days after our precious daughter Alex was born, I carried limp, lethargic, beautiful Mandy in to our family doctor's office begging him to help her. She had been sick for months and no doctor, specialist or surgeon could tell us why. As I sat in his office he read the test results to me. He began with, "there's a mass in her stomach the size of a grapefruit and they are giving her 2 weeks to live." She was rushed to a hospital over an hour away. I only saw my newborn baby girl 3 times over the next 6 weeks as Mandy fought to live. 

As time passed I realized the only way I could mentally, emotionally and physically withstand her next illness, was by not looking back and re-living her previous illness. I simply can't let my mind wander back to think about all that has happened to her. I have to leave it at the hospital doors. Of course I take the knowledge of the illness with me, and I can tell you backwards and forwards anything that has to do with Mandy's health. But I can't allow myself to dwell on the past. I won't let myself go there.....I see no good in wallowing in the heartbreak of her illnesses. I can't stay positive and enjoy the good times of her health, if I live in the pain of the past. 

Watching our daughter suffer at the hands of one life threatening illness after another and experience years and years of gruesome, painful immune studies, is more difficult than words can express. Maybe that's why I can't imagine living a day of my life without having Jesus Christ as my foundation. The depths of my pain when Mandy is suffering can only be comforted and healed through Him. My relationship with Him is the most important one I have and I don't believe I would be sane and functioning without His promise to never abandon me. I believe Mandy's life has a purpose that unfolds daily and I love being part of it. I stand on the promise of His word and thank Him for trusting me enough to allow me the honor of being Mandy's mother.

"Honor your father and your mother, so that you may live long in the land the LORD your God is giving you." Exodus 20:12

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