prologue ~ losing steve, finding myself: one mother's journey through grief

8/7/2019 Prologue ~ Losing Steve, Finding Myself: One Mother's Journey through Grief

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PrologueLosing Steve, Finding Myself: One Mother¶s Journey through Grief

Not long ago, I was talking with a new acquaintance at church. After mentioning my son

Nick, who attends the same church, she asked me the inevitable and still painful innocent

question: ³How many children do you have?´I took a deep breath to gather my strength before delivering the answer I¶ve worked hardto formulate for these occasions. ³We have four surviving children. Our oldest died at 31 of

diabetes almost 5 years ago.´³Really?´ she asked. ³I didn¶t know people could die that young from diabetes.´

This simple comment made me realize how little understood diabetes is among people ingeneral. We all see the commercials advising middle-aged people to control their blood sugar

through diet and exercise, and, when necessary, to add a little pill. These commercials aretargeted to people with Type 2 Diabetes. Although this is a serious disorder, it can usually be

controlled or cured through lifestyle changes, including diet and exercise. Many people don¶tknow that there are two types of diabetes ² or that one of them, Type 1, usually strikes in

childhood and can be a brutal killer.I didn¶t know, either, until bitter experience taught me.

My son, Steve, was diagnosed with Type 1 Diabetes at the tender age of three and a half.Fortunately, a friend of mine at the time was a doctor, or Steve would not have been diagnosed

until he slipped into a diabetic coma. My friend recognized the hallmark signs (intense thirst,sweet and fruity-smelling breath, sudden weight loss, fatigue, and increased urination), and sent

us to Steve¶s pediatrician. Unfortunately, a recent episode of a popular TV medical drama had featured a child with

Type 1 diabetes. When I brought in Steve to have his blood sugar evaluated, the nurse took agood look at my healthy looking son and assumed he was suffering from nothing more than what

my physician friend called ³Marcus Welby Syndrome´. At that time doctors, had to contendweekly with patients complaining of the same symptoms to which they had been ³exposed´ on

their favorite TV medical dramas.During our visit, the nurse dutifully took Steve¶s history, carefully noting each symptom.

She then had him provide a urine specimen, which proved her suspicion. The test strip shedipped into his urine read negative for sugar (indicating no excess sugar in his blood).

Unconvinced, I requested a blood test. A vial of his blood was drawn and we were sent home.At 9:05 the next morning, I received a frantic call from the nurse. ³Has Steve eaten yet

today?´³No. He¶s still sleeping.´ concern crept into my voice.

³We need to get him in here right away. His blood sugar is remarkably high!´Within an hour, we were sitting in the exam room again. The nurse opened a new

container of test strips and tested a fresh sample of Steve¶s urine proving that the original teststrip was faulty. This urine test confirmed the blood test ² Steve¶s blood sugar was dangerously

high. Normal blood sugar fluctuates between 80 and 110mg/dL. Steve¶s blood sugar was over 700.

Steve was immediately admitted to Long Beach Memorial Hospital for what turned out tobe a weeklong introduction to a whole new world for both of us. I had to learn about insulin¶s

role in the body, how to test urine with a reagent tablet, what dietary changes to make, and howto deliver an injection to a squirming child. Steve began what would become a lifelong regimen



of at least twice daily insulin injections, urine testing four times daily (later daily blood testing),regular visits to the doctor, and frequent visits to the hospital.

We also were introduced to a new way of eating that involved calculating the ³TotalAvailable Glucose´ (³TAG´) in his daily diet (a part of therapy his next pediatrician

discontinued), and limiting refined sugar as much as possible. We were told to keep his sugars

low enough to test out as ³trace´. This way, we would be sure that Steve¶s blood sugar levelwasn¶t too high to be unhealthy (though ³unhealthy´ was never defined for me), or too low tocause insulin shock (convulsions and coma).

These seemed like simple guidelines, but we soon learned that Steve was a ³BrittleDiabetic´ a condition that affects about three in every 1,000 juvenile diabetics. Even though we

followed the rules regarding insulin dosage, exercise and diet, Steve often experienced wild anduncontrollable fluctuations in his blood sugar levels. If a late morning urine test showed a high

³spill´ of sugar into his urine, for example, he would need an extra shot of insulin. Some days, asmany as 10 units of the fast-acting regular insulin would be needed but other days 2 units would

do the job too well, sending him into insulin shock. This meant that Steve would sometimes haveto endure an injection of 1 or 2 units every half hour until his blood sugar returned to a more

normal level.Aside from close monitoring, daily life for a child living with Juvenile Diabetes can

closely resemble the daily life any other child. There are no outward signs of the inner diseaseprocess, except when his blood sugar plummeted, depriving his brain of the fuel it needed to

function. At these times, he would become lethargic, sweaty, and get a wild, unearthly look inhis eyes. He would behave irrationally, and if his glucose level wasn¶t raised soon enough, by

forcing him to drink orange juice or prying his mouth open to pour in spoonfuls of sugar, hecould go into convulsions, and eventually a coma. Even on those days when Steve¶s blood sugars

were very high, he looked like just another normal, healthy boy.But on the inside, those high blood sugars were causing irreparable damage to his internal

organs. We had no idea that, little by little, it was killing him because we couldn¶t keep hissugars within normal limits.

After 25 years of living with diabetes, it became obvious that the years of uncontrollable

high blood sugars were taking their toll. In the years leading up to his death, Steve developed andfought many of the complications of diabetes: Any scratch or flea bite, especially on his arms,

could easily develop a staph infection. His skin was often painfully itchy. In his early 20s, hedeveloped dental disease. At 27, he was diagnosed with diabetic retinopathy. He would have

been blind the rest of his life had a kind eye surgeon not donated his services. The doctor removed the blood-clouded fluid from his eyes, repaired the retinal tear, and then refilled his

eyes with a substitute clear fluid as Steve reclined in the chair perfectly still, yet wide awake.When he was 28, his kidneys failed, necessitating first hem-, then peritoneal dialysis. The

periodontal disease was one of the things that made him ineligible for a kidney transplant.(Among the other factors were his ongoing troubles controlling his blood sugar, adhering to the

very strict kidney failure diet, and smoking cigarettes.) The kidney failure caused half dollar-sized grainy skin ulcers (caused by calcium deposits in his skin) all over Steve¶s body, including

his head and handsome face. At 30, he developed neuropathy (nerve damage) in his feet, causinghim to develop a ³slap foot´ gait; every step was like walking barefoot on cactus. Also at 30, he

had a mild heart attack. A few months before he turned 31, his energy level plummeted.



In December 2002, not long after Steve¶s 31st birthday, one of the grainy skin ulcers onhis head became infected. He spent a week in the hospital, receiving powerful intravenous

antibiotics. They didn¶t help at all. His doctor decided to remove the infection surgically. Onethird of his scalp had to be removed to cut away all of the infected tissue.

After the surgery, Steve continued to weaken. Every day, we could see the strength

fading. At the same time he developed a generalized pain throughout his body. By May 2003,Steve could no longer walk without assistance, and had to be pushed in a wheelchair. Within thespace of one year, he had fallen from a hard riding desert biking enthusiast to a very sick man

dependent on others for his every move.By June, his daily pain had become so great that his doctor hospitalized him again. On

July 8, after four weeks of trying all they could to help Steve¶s body fight back, doctors told ushe would not improve. We were told Steve might live as much as three to six more months. We

spent the next two weeks sometimes trying to face facts (³How do you want to be buried?´³Cremate me, it¶s the cheapest´), but mostly avoiding discussion of this reality. Meanwhile, his

weakness continued to intensify.On Tuesday, July 22, just 14 days after being told he was dying, Steve was too weak to

be helped out of bed. An hour later, he couldn¶t even stay awake. He slept fitfully, sometimesstill struggling with the beast that was consuming him from the inside out. Very early

Wednesday morning, July 23, he fell into a coma. At 3:26 that afternoon, Steve breathed his last,succumbing to a brutal killer and leaving behind a large family, including two young sons.

His absence from our family is still palpable.What follows is the story of my journey through grief, the ups and downs on the bumpy

road to recovery. Most of this material was taken from my journal, and though some places hadto be filled in from memory, it is an honest account. My prayer is that no parent should ever have

to travel this road, but for those of us who must, I hope my story can be of some help to hauntingquestions such as, ³Am I the only one who feels like this?́ ³Will it ever get any better?´ ³Will I

ever enjoy life again?´The quick answers: No. Yes. And YES, YOU CAN!

Approximately 180,000 people die each year as a direct result of diabetes. Althoughcontrollable with injected (or pumped) insulin, diet, and exercise, Juvenile Diabetes remains

incurable as of this writing. However, an army of dedicated researchers is working to bring anend to this devastating disease. Some research organizations, like the Juvenile Diabetes Research

Foundation, feel that there is real hope on the horizon so that, for future generations, JuvenileDiabetes will no longer be a threat.

Please join me in praying for a cure.God bless you all.

± Debbie Haas, Winter 2011

prologue ~ losing steve, finding myself: one mother's journey through grief

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