Preachers had warned me that being angry with or disappointed in God was wrong because He always did everything right and good.
And so He does.
But I had also read about a hundred different psalms where the writer cried out in anger, despair, sadness, or bewilderment. “Where are You, God?” the psalmists lamented. “And why are You so far from helping me?” At that time, those were the types of questions I was praying.
I realized there had to be a difference between blaspheming God (taunting His justice and questioning His character) and crying out in despair. I felt that my brutal honesty was a sincere offering. He knew my thoughts already, so how in the world could I fake a happy face and good attitude?
I felt as if it had to be okay not to be okay.
Emily eventually came out of the coma. I should have been ecstatic, but I was still numb. She was then moved to the eleventh floor, which is for stabler patients. The doctors and nurses hit us with an onslaught of information about insulin dosages and glucose parameters and how to operate a meter and how to detect dangerous blood sugar levels, and on and on. It was too much to take in. I was walking around dazed and numb. There didn’t seem to be any time to process our grief over the loss of health and what we considered a normal life. Instead, we had to get with the program and learn how to treat her diabetes.
“Mama,” she said, “I can’t wait to get out of here. I don’t want any more shots.” This broke my heart because to live she had to have several daily insulin injections. I gently gave the news to her that the shots were the new normal.
“I’m not going to eat; then I won’t have to have insulin.” She was grasping at possibilities other than the ones presented by the medical staff. It was a nice thought but not realistic.
When I had taken our first child home from the hospital and realized she didn’t come with a manual, I had felt inadequate and uncertain. But that was nothing compared to the feelings of trepidation when we drove Emily home from the hospital. I knew her meds or her food could get messed up in any number of ways and she might die as a result. But I could not lie down on the floor and give in to the fear. For her sake I had to be braver than I was, and had to choose to act how I wished I felt.
Those first days back at home were dark. We had more questions than answers. To help us understand the diabetes lifestyle, six of us took classes at the Children’s Hospital clinic building. Emily and I took a second course to make sure we comprehended the disease and its nuances. Isn’t the first rule of battle to know your enemy? Well, this enemy was crafty.
I really, really like walking into chaos and having the ability to restore order. Diabetes, however, can only be relatively controlled. For example, let’s say Emily did x, y, and z in one twenty-four hour period, and she subsequently had great blood sugar readings. The next day she could do x, y, and z in exactly the same way and her sugars could be out of range. The unpredictability of hormones, food, lack of sleep, excess sleep, exercise, cold temperatures, and stress could affect her body’s ability to utilize the insulin injected into her arms, legs, or belly. And if she got ill, oh boy, that could be a wild ride. This blood-sugar roller coaster would result in many tearful moments.
“I don’t want to live with this disease, Mom,” she told me one day. “I just can’t. It’s too much. It’s never going away. I’m never going to get better. How am I supposed to do this for the rest of my life?”
Emily’s question and others like it have driven me to pray like I have not done on my own behalf. I don’t have trite answers; if I did go down that path, she would blow those off quicker than I could say them. The response I usually give is “You don’t have to do this for the rest of your life today. You don’t even have to do tomorrow today. Just get through this next minute or two.”
I dreaded and feared the day she would get ill and the “Sick Day” protocol would kick in. And because God is good, that fear was faced head-on. The day came when it had to be instituted. Emily had the stomach flu again, not terrible, but enough that she couldn’t keep any food down. A normal child can go twenty-four hours without eating or drinking. They’ll be shaky but okay. For a diabetic there is no such luxury as waiting it out. You don’t say, “Toughen up and you’ll be fine.” At the very least she had to be able to keep down sugary liquids so she could receive insulin. She tossed everything back up again in spite of having antinausea medicine. Finally, after a day of checking Emily’s glucose levels every hour, the heavy uncertainty of whether I was doing the best thing or not, and making multiple phone calls to update the diabetes nurse, we cried uncle. We couldn’t manage the vomiting at home and had to go to the hospital. She was given IV fluids and glucose, and then was able to be given insulin injections.
What I had feared and dreaded and made me pray, “Oh God, please not that,” had happened. And crazy enough, the days moving forward became more doable because the scariness of the unknown was relieved. We then knew what we could manage at home and what would require a trip to the hospital. Once we had faced and conquered another worst-case scenario, the fear of the unknown had another bite taken out of it.
But my responses to Emily’s sugars being too low or too high unsettled my daughter. My heart being clenched in a tight fist of fear over the possibility she could die tainted almost all of our interactions. This inability on my part to let go of my need to control her disease nearly killed her because of her intense desire not to worry me.
I was suddenly up close and personal to the very real potential of having one of my own biological children die, and my fears about it had to be shaken and overcome. I found comfort in these verses from Hebrews 2:14–15: “By embracing death, taking it into himself, he destroyed the Devil’s hold on death and freed all who cower through life, scared to death of death” (MSG, emphasis added).
On December 28, 2013, our family celebrated Mary Elisabeth’s sixteenth birthday. Dozens of friends packed inside the house. It was part of the kids’ normal chaotic after-Christmas sledding party. Boots, hats, gloves, wet coats, and snowy mud tracks littered the first floor of our home. The hungry sledders chowed down pancakes and sipped hot chocolate. A fire blazed in the fireplace. The music was cranked up. The kids played games, talked, and lounged all over the family room, kitchen, dining and living rooms. There were bodies, bodies everywhere.
I was busy staying on top of the food supply and washing the dishes piling up all over the house. I don’t know whether I asked Emily what her sugars were that day, but I assumed since we had a year in of blood-sugar management, she was probably fine. This was an assumption I should not have made.
At 3:00 a.m. Mark and I awoke to a loud banging on the wall between our bedroom and Emily’s. We’d had no experience with this kind of noise before; it was rhythmic and repetitive. Mark called out her name, but she didn’t answer. I threw off the blankets and dashed across the room saying, “Dear God! I think she’s seizing!”
Mark stopped briefly to throw on a pair of pants before running to get to Emily. In the five seconds it took to get out of our door and into her room and flip on the light, the noise hadn’t abated. We found her writhing in bed, limbs flailing everywhere. Her head was repeatedly hitting the wall and the desk.
Mark instantly dropped to his knees by her low platform bed. I shouted as I headed down the hall, “Turn her on her left side so she doesn’t choke on her vomit! I’ll call 911!”
I ran down the stairs—half tripping in my haste—and flipped on the light in the dining room. I grabbed the phone with hands shaking so badly I could hardly dial the number. “C’mon! C’mon! C’mon!” I said over and over to myself. “Dang it all; get your fingers to work!”
The 911 operator answered quickly, and I explained our emergency. She said she would send the EMTs to our home.
I then glanced to my right and saw several pairs of eyes staring at me! I realized I was standing there in my underwear and a T-shirt. The youths observing my harried actions and hearing my frantic words were Joshua’s
friends from New Tribes Bible Institute who had come up to go sledding the day before.
Hello!
I put up my right hand toward them, shaking my head no, as if to say, “I cannot deal with you right now. I am so sorry you’re seeing me like this, but in the whole scheme of things, I don’t care!”
I ran around in the dining room to flip on the Christmas lights to illuminate our porch and front door, which I unlocked, and I ran back upstairs to Mark, who had been frantically calling me to come help him. As frightening as it was, there wasn’t much to do for Emily but try to keep her from hurting herself. Mark was sitting behind her back, propping her on her left side, both to keep her from aspirating any vomit but also to aid in some small way any breathing efforts she might be trying to make. Keeping her arms and legs and head from banging into the wall or the desk was the best we could do in the moment. I had glucagon but was too freaked out even to put two thoughts together to get it mixed up and injected. I felt like the worst mom ever. The grand mal seizures were contorting her features. Her hair was long, but stringy and coated in vomit, plastered in places to her forehead and neck. It was distressing to watch. I stepped quickly into my bedroom to throw on a pair of sweats so the paramedics didn’t have to deal with my state of undress. (No use in scaring or scarring them, too.)
The rest of the household was awake and congregated downstairs wondering what in the world was happening. Andrew, at thirteen years old, always the gentleman and naturally stepping into the role of directing traffic, met the Sheboygan Fire Department truck and ambulance with their EMTs and sent them upstairs to Emily’s room. She ended up being transported to St. Nicholas Hospital again.
We later learned her blood sugars had dropped to undetectable levels and then too low to manage anywhere except at a hospital. The grand mal seizures had developed because her brain needed glucose. All the shaking of her muscles was to release any sugar in them, get it into her bloodstream and then to her brain and vital organs. God has made our bodies fearfully and wonderfully and built in ways for life to be preserved in spite of seriously adverse circumstances.
Emily was in the emergency room for a couple of hours while we waited to be admitted.
I would need to be at her side to help maintain her health and safety, in spite of my feelings of complete inadequacy to manage her diabetes. Once again I ran home to get some clothing for myself while Mark remained with Emily in the ER.
I got home and lay down for a minute on my bed. I wasn’t ranting and raving; instead, the tears dripped silently out of the outside corners of my eyes and into my hair and ears. I just wanted to catch my breath and decompress for a second before heading back to the hospital where I had to be strong. I could not fall apart emotionally. My reprieve was short-lived, cut off by my ringing phone. I answered to find our personal pediatrician, and friend, was on the line. “Hey! Dr. There!” he said. “When are you coming back? Your husband is not being very helpful.” He clipped his sentences out in his signature short-and-direct fashion, not necessarily waiting for a response to the first question before asking another.
I laughed so hard the tears started again. I could imagine the two of them attempting to communicate about medical things. I assured him I would be back very shortly.
I arrived at the ER, didn’t see Dr. T, and asked Mark what was up.
He told me, “Dr. T came in and said, ‘I need to know your kids’ names, their birthdates, and their health history.’ I told him, ‘I know my kids’ names—all eight of them—not necessarily in order. I do not know their birthdates, and I definitely don’t know their health history. That’s my wife’s job!’ and then he walked out.”
After the night’s emotional roller coaster, this no-nonsense, prefers-to-remain-ignorant approach my husband takes (and makes no apology for) provided me with some much-needed, though brief, comic relief.
My fear over feeling responsible to keep my child alive threatened to consume me. What I hadn’t known was that Emily had a dilemma about dosing with insulin. She had met many a type 2 diabetic in our social circles who told her they didn’t have to check their sugars with a painful finger poke. They just knew by the way they felt that their sugar was high. They also didn’t need insulin injections. They took a pill. They misunderstood the vast difference between the type 2 diabetes they had and Emily’s type 1, which affects only 5 to 10 percent of the diabetes population. This misinformation left Emily believing the doctors and I had lied to her about how to manage her disease. Why was she the only one who had to get stuck with needles all the time? Why couldn’t she just swallow a pill when she felt a little off?
At bedtime the night before, she assumed her sugars were probably very high because of all the syrup and cocoa she had consumed at the party. She misread the dial on her insulin pen and accidentally took thirty units of insulin, which is about six times what she normally takes. She then realized her mistake, checked her blood sugar—which was normal—and decided to go eat a bunch more junk food to help elevate her blood glucose. She told me later, “No way, no how did I want to come tell you at 10:00 p.m. what I’d done and have you freak out about it.” This wasn’t a sound decision on her part, but her fear of my reaction was greater than her fear of her actions. I have already described the fallout of this decision. She learned a sober lesson about the difference between type 1 and type 2 diabetes, and it was a valuable one. She’s a walking miracle. God definitely has a plan for her life because, humanly speaking, she should not still be here.
Emily is a treasure and similar to me in personality. We’re both “pistols,” passionate and enthusiastic. This makes for some heated exchanges. Remember the sassy attitude I had toward my dad when I got home late after staying at the library? Emily has come home late a few times from the library, too, a perfectly acceptable place to go, but not when no one has any idea she’s going there instead of coming straight home from school. I have not exercised the self-control I should have when she seems unwilling to manage her diabetes carefully or to let me know where she is at all times. This can create anxiety in my mother-heart. I have allowed her unexplained absences and then her snarky responses to my inquiries to take my wild fear for her well-being and turn it into anger.
I have sat on Emily’s bed and asked for forgiveness because my angry response to her was not justified, even though her behavior needed correction. My fear has been a lack of faith that God has her in hand and cares much more for her well-being here on earth and eternally than I ever could, and while that is hard to imagine, it is nevertheless true.
Emily’s days are numbered, and they were before there was even one of them. God knew her in my womb and knitted her body together exactly as He wanted it to be. Nothing that has happened in her life has taken Him by surprise. He is in control, and He is accomplishing His will. God has graciously preserved my life. He has preserved my daughter’s life on more than one occasion. For example, the night Emily was diagnosed with diabetes, Johanna had been prompted in her heart several times to go upstairs and put some lotion on Emily’s legs. This isn’t strange, as Emily has always had very dry skin, but Johanna didn’t want to go. She wasn’t feeling well, and Emily’s legs could wait for another day, but the thought that she should get up and go to Emily persisted. After going to Emily’s room, when she started to apply the lotion, she was confused and frightened to find that her sister’s legs were like sticks they were so thin. The skin was waxy white and looked like she was wearing purple lace nylon stockings because of the circulation being compromised to both her arms and legs. Johanna had no idea how sick Emily was, but the appearance of her lower limbs and her unwillingness to allow Johanna to get her dressed and warm caused her to come find me. Emily would have died very soon afterward in her bed alone if Johanna had not followed the promptings to check on her. On the day she had the grand mal seizures, if she had been farther down in her bed, her head would not have hit the wall between our bedrooms. Mark and I were deep in sleep and might not have heard any noise. So
she once again could have easily died, and we would not have known until morning.
“Death in bed” syndrome is a real thing for diabetics. One way that we handle it is to ask in the morning, “Has anybody talked to Emily today? Is she still breathing?” We’re not kidding. The words are said calmly as though we have asked whether someone wants eggs or oatmeal for breakfast, but we don’t let the light tone in which they are said take away from the seriousness of the inquiry.
I have had to learn to trust that God intensely loves and is carrying Emily, and is carrying us, no matter what happens. At times I have chosen to believe otherwise, and I have been heck to live with and made everybody miserable, dying “a thousand deaths dreading one.”1
She told me the other day, “You know, Mom, it’s kind of crazy what used to freak us out, and now you’re like ‘Pfft, your sugar’s 450, what are you doing about it?’ and you’re not panicked anymore. All the stuff that was so scary just isn’t that big of a deal.” We’re not lighthearted with a careless attitude toward the danger Emily could be in, but the stranglehold that fear has had on my heart has lessened and in turn helped my daughter, who can be more scared by my response to her diabetes than by the disease itself.
I have gone through the Esther study by Beth Moore2 a number of times, and the material helped me put things into perspective. Satan has threatened me time and again over the years, causing fear to well up and seize my heart and mind over the possibility that one of my children could die unexpectedly. “Is God good,” he taunts, “if He lets that happen?” I consciously choose over and over again (not just once and done), not to live there, being threatened and thinking to myself that I could declare God unjust and unfair because He didn’t answer my prayers the way I wanted, that I could rail against heaven, declaring God unloving should one of my kids die.
I Will Love You Forever Page 14