As I was seeking out ideas to write about, I was contacted by a woman who has Lyme disease which is nothing unusual any more. After talking with her, she said, "Get your story out there somehow. People need to hear it." Is this the thing to write about? Can I glorify God by writing about it? At this point, I can look back and see His hand in this six year journey - maybe it is right to flesh it out here on this space. I will try.
Once upon a time there was a little girl who was active and creative and very organized. Even as a small child, she loved to rearrange her room, organize her clothes and toys and she would play all day non-stop. Her parents put her in gymnastics because she needed an outlet for all this energy and she excelled. Gymnastics four days a week, four hours at a time could not drain her. She would still come home and ride her bike, climb a tree, or play chase with friends. She rarely cried, got sick, or complained. She was fearless and carefree.
A month before she turned 10, she became sick. The doctor said, "Stomach virus." After a week she was better but three days later she was sick again and this time worse. The doctor said, "Reinfection of the stomach virus." The loss of appetite, vomiting, fever, headache and diarrhea lasted a week but after that week she was not exactly better. She was scared to go places, to do things, and panic attacks became a daily occurrence. If we did go somewhere, she sometimes would freak out and start crying loudly. Her stomach hurt and some days were battles with severe constipation or diarrhea. She was weak and had to quit her beloved gymnastics.
The months were filled with more tests and appointments. We were sent to the children's hospital for more in-depth tests, ultrasounds, and x-rays. During the blood work, she passed out and looked like she was having a seizure. I was scared and all I could do was tell the doctors that this child was not the same child any more. The doctor found nothing.
We ended up at a less-than-friendly GI doctor who spent five minutes with us then pronounced the cause as "post-infectious IBS" caused by the dual stomach viruses and would resolve itself in 6 months to a year with a high fiber diet and probiotics. It took a year but still this girl was not the same. We downgraded to a new normal.
In those three years, the girl stayed inside more and more. She began to have more headaches and strange joint pain plus a very weird pain in her tailbone. The doctor would do tests and tell us that there was nothing. After a few visit like this, the doctor suggested that it was in "her head, too much stress." I became apprehensive about taking her to the doctor after that. So, this step downward became our new normal and the plan was to give her a relaxed life and pray this would pass.
One year later, symptoms still existed and the joint and tailbone pain were worse. After pushing for a real answer, we were sent to an orthopedic doctor. Another exam and x-rays and this doctor gave us knee braces and sent us to a physical therapist. He had no answer for the tailbone pain. The physical therapist gave her exercises and put her on a regimen of three Ibuprofen three times a day. This only brought slight relief and more symptoms were being added. Severe neck pain with stiffness, migraines, increasing fatigue, and weight loss. In July 2013, we stopped the therapy after a month and again downgraded our normal.
By August, the fatigue was causing a large part of her day to be consumed by sleep. Pain and headaches had her in tears at least once a week. I was thankful for home-school because I was not sure how she could go to school in this state. By October, she could barely climb the stairs or sit down some days because of pain. Her crying increased and on occasion it would be for no reason that she could explain. There was no way any of us could continue as if this was normal, our normal had hit rock bottom. It was taking a toll on all of us.
That November, the girl became violently ill and the doctor said, "Kidney infection" and put her on a round of antibiotics. When that did not do much, the doctor changed the antibiotic. She was also concerned that the girl was losing so much weight. I told her again of all the symptoms and she sat quietly for a moment then examined her chart. Finally, the doctor said that nothing else showed up in her blood work so maybe it was just the kidney infection. I could not understand why no one wanted to see all the years of symptoms as related.
December brought no relief from the kidney infection and dehydration and pain sent us to the emergency room for more tests, ultrasound, and painful antibiotics injected into the thighs plus lots of IV fluids. As she laid there, I looked at her small, weak body and face so pale. We tried to make jokes to each other but I was afraid and it was the first time my prayers changed from "Lord, help my daughter" to "Lord, are You going to take my daughter? If You are, I need You to prepare my heart because I am not sure how I can get through it in a way that will bring You glory." The infection passed but not the other symptoms and depression became our foremost enemy.
Not many words can describe that time. The girl was acting so strangely and was awake only about 4-5 hours a day. One evening I yelled for her to come to dinner but she did not answer. I called her cell phone, no answer. I went upstairs and there was no girl. Frantic, I searched all around. I knew she was in the house. Finally, I found her in the dark of her bathroom linen closet, curled in a ball quietly sobbing. "I don't know what's wrong with me. I can't quit crying. I want to die." My heart sank and I sat holding her while we both cried.
Little did we know that an answer was coming...
- Psalm 18:6
"In my distress I called upon the LORD; to my God I cried for help.
From his temple he heard my voice, and my cry to him reached his ears."