My health has been restored in a great measure on all fronts. I still have a number of autoimmune diseases, but according to the Sanoviv mind-set, I don’t mess around trying to medicate the individual symptoms; instead, I continue to carefully control my diet and my coping mechanisms for the stress in my life to keep my inflammation levels a pile of coals rather than the active, raging fire they have been. I will not be cured this side of heaven, but I have been given a new lease on life and am able to live remarkably well now compared to the difficulties I faced for decades.
God carried me through the valleys. He preserved me through my attempts to alienate all who loved and cared for me. Those He wanted to stay did so. I was not ever truly abandoned, and this fear I cowered under for years had the power shaken out of it, and fear of abandonment does not hold sway over my life anymore!
One of my heroes is Joni Eareckson Tada. She has thanked God from a deep place in her heart for all she has endured as a quadriplegic. This act is humanly flabbergasting, and the only way she can genuinely do it is because Jesus has supernaturally given her a heart of joy. She wrote the following in regard to her own sufferings:
“And I get to become like Him in this life. I get to experience the intimate fellowship of sharing in His sufferings, the sweetness and the preciousness of the Savior. I become holy as He is holy. O God, “you will make me full of gladness with your presence” (Acts 2:28 ESV).”1
The song lyrics from “Amazing Grace”—“I once was lost and now am found”—also summarize my experience. Those words would not have the gravity and glory they deserve if my plight had been only a slight detour. I was at a complete dead end before God lifted me out of the pit. I endured a hurricane, not a spring shower. I have my feet on the Rock of Ages, and He has sheltered me in the midst of the storms.
* rectopexy
8
THE TIGHT FIST OF FEAR
Fear not, I am with thee, oh, be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by My righteous, omnipotent hand.
—JOHN KEEN, “HOW FIRM A FOUNDATION,
YE SAINTS OF THE LORD”
When I was sixteen and a sophomore in high school, my dad took me to get my driver’s license. At the time I thought it was because I was nearly an adult and mature for my age; now I know it had more to do with his being sick and tired of running my brothers and me back and forth to school and sports activities. After I got my license and what I assumed was newfound freedom, I felt as if I had my dad’s blessing to go wherever I liked. A couple of weeks later I discovered a library. I found a whole row of “racy” novels by Grace Livingston Hill. I sat down on a couch and read one of them in an hour. Honor Girl was something akin to Seven Brides for Seven Brothers where Milly comes in and restores order to a messy, rambunctious household. My ideal world!
I then checked out about twenty-five more books and headed home.
Back in the olden days when I was a teenager (1981), phones existed, but they were attached to walls by very long cords. The library had such an invention; however, the thought never occurred to me I might want to call and let my dad know I was stopping there and would be late getting home.
I walked into the house to find my dad pacing between the living room and kitchen. His expression was fierce, his eyes wild. He demanded to know where I had been.
I was taken aback by his intensity and mental state; it made me nervous and confused. My complete and utter lack of maturity reared its stupid head, and out of my mouth came a foolish display of bravado. I answered, “What’s it to you?”
Yeah.
What transpired after that will not be recounted here. Let’s just say it wasn’t pretty, and I learned a valuable life lesson that day. I never used that tone or those words with him again, rightfully and respectfully so.
I will tell you now, and have advised my own teenagers to take my example and learn what will not gently diffuse the rabid fear parents feel when they are afraid their child might have died or is dying.
My sister had died just months before this interaction with my dad. Because I was not a parent, I didn’t have any idea the toll actually having a child die unexpectedly could take, and the possibility something terrible had happened to me wasn’t so far-fetched. I didn’t put the two together until three months after Emmalynn’s funeral.
Emmalynn was conceived and carried and birthed by another woman. I walked into her life knowing her days were limited.
While some of the unknown unsettled us and at times left us a little fearful, we didn’t feel terror associated with her dying, because we had already acknowledged that our role was not to save her from death but rather to provide a life.
In December 2012, only a week after our meeting with the foster care social worker, almost everyone in our family had the flu. Mark was pretty much the last man standing. I was down with it; my kids had taken turns puking for days too. The evening of December 20, nineteen-year-old Johanna, ever the responsible one, came into my room and told me I needed to come talk to Emily. She had gotten out of the tub but was not allowing Johanna to help her get dressed.
I fought through the mental fog that the illness had created and thought, Emily is eleven years old. She does not need you to help her get dressed, seriously. Irritated, I pulled my aching body up and out of bed and stumbled into Emily’s room. She was lying on her bed uncovered, shaking, and most certainly not dressed. What I saw shocked me to complete wakefulness.
Emily appeared to be nearly unconscious; her breathing was loud and deep and labored. Her rib cage was clearly defined. The skin on her collarbones was severely retracted, emphasizing that there was no fat on her chest. Her elbows, knees, and wrists were all sticking out, only skin and bones. Her arms and legs were mottled with lace-like purple discoloration. She was so gaunt that images of concentration camp victims flashed through my head. Fear turned terror gripped my soul. I cried out, gulping with sobs, “Oh my God!”—I was not swearing; I was fervently praying—“Baby girl, what is wrong with you?”
I gathered Emily up in my arms with a blanket wrapped around her and carried her out to the van with the help of Johanna and Charity. I wasn’t well myself and obviously not thinking super clearly, since calling 911 would have been the better option. The other kids were sick, so I decided against bringing any of them with me to the hospital. I can’t even remember what I told them because my only thought was to get Emily to the hospital as fast as possible. On the way, I got out my flip phone and called Mark, who was at work. In full hysterics I told him to get to the hospital.
Now, when I’m panicked, his first line of defense is to go into super-calm mode (which is super annoying) and land at the opposite end of the emotional spectrum. This kind of response tends to make me feel as though I have to get even more intense to help him understand I’m losing it for a good reason.
He told me in a flat tone, “Calm down. I’m working!”
It was about 9:00 p.m., and he wanted to wait an hour until his shift was over.
Usually I appreciate his work ethic, but in this crisis, it made me so angry my fear was displaced, and I lashed out. “I’m taking Emily to St. Nicholas Hospital!” I took a breath, and before slamming the phone shut, I ended with, “I. Cannot. Do. This. Alone!”
I arrived at the hospital and whipped quickly into a parking space. I didn’t care if I had parked in between the lines or not. I ran into the building for a wheelchair, zoomed crazily back out again, threw the side door of the van open, and struggled to position Emily in the wheelchair. Then once more I raced like a madwoman into the hospital and pushed Emily straight to the nearby admitting desk, where I am known by sight. (One benefit of living in a small town.)
The staff took one look at her, or maybe me, and immediately took us back into the ER, room 4. Gulp. Room 4. I knew that room was fully equipped to handle a life-and-death situation. It was the room in w
hich codes were most often called. It was also the room where codes weren’t always successful and the patients didn’t make it out alive.
Suddenly a flurry of activity broke out, and people rushed past me on all sides. Someone asked me to stand back while the ER team got Emily situated on a gurney. I stood there, trembling almost uncontrollably. I pressed my fist into my mouth to keep from screaming out loud, even though I was certainly doing so in my head.
Emily was very still. Her breathing was ragged, deep, and rasping. Listening to it was agony.
The medical personnel were poking all over her arms trying to get blood for tests. That the poking was unsuccessful was disturbing enough, but even more frightening was Emily’s lack of response. She displayed no reaction to the repeated needle sticks, which certainly were causing pain.
The phlebotomist finally got enough blood to send to the lab, and then IV fluids were started. The respiratory therapist applied an oxygen mask to Emily’s face, and someone covered her with blankets to warm her mottled, emaciated body.
Throughout those first few minutes, I was hyperventilating and nearly fell down, but somehow I was able to slump into a nearby chair and curl up into the fetal position, dropping my head onto my knees. It was my attempt to slow my breathing and get some blood back to my head. I heard the nurse tell Emily to slow down her breathing. Sometime later—minutes or hours, I don’t know which—the doctor came in and announced, “We’ve gotten some of her lab results back. Her blood sugars are elevated. She has diabetes.”
I choked in disbelief, and my right arm shot up into the air stiff, unyielding. My hand was palm toward him, resisting everything he was saying as if to ward him off and swat him away. I spoke through gritted teeth, my words chopping the air between us in pieces. “No! You do not understand. I don’t do diabetes. It’s the flu. SHE HAS THE FLU. Give her some fluids, and I’m taking her home. She’s going to be fine.”
After a weighty pause, he quietly said, “She does have the flu. She’s also in a ketoacidotic coma. And you do, do diabetes, now.” His words were gentle, but they cut me to the core. He was not the enemy, but I felt venomous toward the news he delivered. My fear evaporated, and instead, I felt intensely angry. I was grappling for answers.
I wanted to know why. I wanted to know how. I wanted…
My Jesus, I wanted to wake up from this nightmare.
Mark arrived in the room. We were both bewildered, and we paced around in the small space near Emily’s bed, hashing through how in the world we had missed the fact that our youngest child had type 1 diabetes. Before Mark had left for work that afternoon, he had told me he had asked Emily to stop hyperventilating. But in my fluinduced stupor, I just thought she was “normal” sick and dismissed it. Shaking our heads in confusion, we were no longer at odds but one in our souls on behalf of our child.
Throughout the winter Emily had worn layers and thick clothing that hid her form. In recent days she had been wearing winter sleepers, which also disguised the dramatic weight loss she had experienced. We knew she was thinner, but it didn’t signal an illness because our family’s diet had changed due to my celiac disease, and she no longer ate doughnuts, cake, or cookies on a regular basis.
The doctor said the scary hyperventilation she had been doing was actually her body’s compensation mechanism, called Kussmaul breathing, which is an effort to preserve life by blowing off CO2 to offset the metabolic disaster uncontrolled diabetes can cause. This type of breathing signifies the onset of a diabetic coma, and if treatment isn’t given, it is the hallmark of imminent death.
We also found out that it’s common to discover that a child has diabetes when the flu hits. A diabetic child has a much more debilitating response to illnesses, which often require medical intervention. The mottling on Emily’s arms and legs was caused by compromised blood circulation to her limbs—a shutdown—to allow more blood to flow to her organs, keeping her brain and heart, liver, and kidneys functioning. This was another of her body’s last-ditch efforts to preserve life. The scariest news, however, was that even with treatment, Emily’s brain could swell while she was in the coma, a condition that could be fatal or lead to brain damage.
The ER doctor conferred with the specialist at Children’s Hospital in Milwaukee, and they decided that Emily must be moved the sixty miles south to the superior facility. The regular Sheboygan ambulance wasn’t sufficiently equipped, and so the move required a pediatric intensive care unit on wheels. The raging blizzard made the road conditions hazardous, but the risk of death from diabetes outweighed the dangers of transporting her to Milwaukee.
Since I was the one who would stay with Emily at Children’s Hospital, I needed to go home and get clothing and my purse. Mark stayed with Emily while I went home.
At 2:00 a.m. I began the twenty-seven-block drive while still wearing my pajamas.
I didn’t rush. Even if I had wanted to drive recklessly fast, the roads, slick and full of snow, prohibited it and required careful navigation. The streets were empty of traffic. Most people appeared to be at home, snug in their beds, their children sleeping soundly. My thoughts darted to how unfair it was our family had to deal with this, as though somehow we didn’t deserve this trouble. As if we had a right to think life is fair.
I felt blindsided by the life-threatening diagnosis of diabetes. My nursing experience had given me compassion toward my patients with the disease but not empathy for the way it turned a world upside down.
I was angry, fuming, yet praying. How crazy is that? I didn’t go off on the doctor at the hospital. I did not scream at the nurses about how unfair I felt this was. I went to the One who holds it all.
I found myself screaming and pounding on the steering wheel, crying out in agony, “You planned this? Are You kidding me? You planned this? You have messed with me. You have beaten me down. Crushed my heart. Wrecked my physical body so I’ll never recover. It is one thing to do it to me, dear God, but how dare You mess with my child! Do you hear me? Not. My. Child!”
My chest heaved out sobs, coughing with the effort, and I felt as if my lungs would explode as I expressed the huge sense of injustice I felt.
The lyrics of “Trust and Obey” flashed through my mind, taking me back to when I sang it with all my might in Sunday school as a child. The pastor’s wife pounded away on the old upright piano in the corner of the open basement room. One of the kids held up a large poster with the hymn’s words written in huge letters: “Trust and obey, for there’s no other way to be happy in Jesus.”
Those were sweet words to sing in church on a sunny day in May. On this freezing cold night in December, when the sky was as black as my world, the words mocked me.
Because I was ranting, telling God what I knew to be true from my perspective and not necessarily listening for His take on it, my spirit was not immediately calmed. I didn’t have a good explanation for how I could be so adrenalized while at the same time feel beyond exhausted from both the flu and the terror of the past several hours.
Once I arrived at my house, I quickly put on my faded and worn Boy Scout hoodie and jeans, gathered a few other things, and made my way back to the hospital. The trip back had a touch less intensity only because I was completely spent and running on fumes. I reined in my anxious feelings before facing the medical staff in the ER again. When I am afraid, I often feel powerless, and I sometimes flip into angry mode instead, which probably wouldn’t accomplish anything worthwhile.
The specialized ambulance and crew arrived from Children’s Hospital by 3:00 a.m., and Emily was gently loaded into the back. Two paramedics sat next to her to keep her stable. I was directed up front and climbed wearily into the seat and leaned my head against the icy cold passenger’s window, shivering almost uncontrollably.
Mark told me later that he watched as Emily was loaded into the ambulance. His baby was strapped securely on that stretcher, but it may as well have been his own heart. There was nothing he could control or do about it but pray. As the ambulance drove
away, he dropped to his knees on the cold driveway, shoulders slumped, and wept.
At Children’s Hospital Emily was quickly moved to the ICU, the staff started an insulin drip as well as glucose into Emily’s IV lines, and they frequently checked her level of consciousness. “Emily, Emily, do you know where you are?” a doctor or nurse would ask. She gave no response.
Hours later her coma was finally beginning to lift, and one of the doctors came in and did a firm sternal rub, pressing his knuckles hard against her breastbone. This painful stimulus caused her to gasp and tear up.
I gave him an “if looks could kill you’d be ten feet under” scowl; I was not happy at all with his seeming callousness.
Emily stirred slightly, and when he asked again, louder and more insistent this time, “Emily, where are you?” she sighed wearily and said, “I’m. Right. Here.”
For the first time in about twenty-four hours, I felt myself smile. She was indeed right here. And if the doctor pressing literally and figuratively didn’t know where she was, that was not her problem.
I would like to tell you that God’s peace and comfort came in like a flood and carried me away on a life raft of love. It didn’t happen like that. No audible voice or quiet inner voice assured me all was going to be well. I simply placed one foot in front of the other, having no ability to see down the road and not knowing for sure that anything would ever be all right again.
Ironically, I had faith that God was listening to my prayers even though I hissed some of them. I knew God was real even if it seemed as though He wasn’t helping me. I couldn’t be angry with Someone who didn’t exist, could I? I would have drowned in hopelessness and been completely lost if I couldn’t pray through my anger. Warm and fuzzy would not describe our relationship in that moment. Deep down I felt steady and secure, knowing He was hearing me, whether or not He was answering in a way I liked. Praying helped me to avoid panicking and kept me at the level of just plain ol’ mad.
I Will Love You Forever Page 13
