Prologue

Losing 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: “How many children do you have?”
I took a deep breath to gather my strength before delivering the answer I’ve worked hard
to formulate for these occasions. “We have four surviving children. Our oldest died at 31 of
diabetes almost 5 years ago.”
“Really?” she asked. “I didn’t know people could die that young from diabetes.”
This simple comment made me realize how little understood diabetes is among people in
general. 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 are
targeted 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’t
know that there are two types of diabetes — 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 a
good look at my healthy looking son and assumed he was suffering from nothing more than what
my physician friend called “Marcus Welby Syndrome”. At that time doctors, had to contend
weekly with patients complaining of the same symptoms to which they had been “exposed” 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 she
dipped 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. “Has Steve eaten yet
today?”
“No. He’s still sleeping.” concern crept into my voice.
“We 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 test
strip was faulty. This urine test confirmed the blood test — 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 to
be 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 how
to 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 “Total
Available Glucose” (“TAG”) 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 “trace”. This way, we would be sure that Steve’s blood sugar level
wasn’t too high to be unhealthy (though “unhealthy” was never defined for me), or too low to
cause insulin shock (convulsions and coma).
These seemed like simple guidelines, but we soon learned that Steve was a “Brittle
Diabetic” 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 and
uncontrollable fluctuations in his blood sugar levels. If a late morning urine test showed a high
“spill” of sugar into his urine, for example, he would need an extra shot of insulin. Some days, as
many 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 have
to 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 disease
process, 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 in
his 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, he
could 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 his
sugars 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 and
fought 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, he
developed 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, causing
him to develop a “slap 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 on
his 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. One
third 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 the
space 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 us
he 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 (“How do you want to be buried?”
“Cremate 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, sometimes
still 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 had
to 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 haunting
questions such as, “Am I the only one who feels like this?” “Will it ever get any better?” “Will 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. Although
controllable 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 an
end 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, Juvenile
Diabetes will no longer be a threat.
Please join me in praying for a cure.
God bless you all.
– Debbie Haas, Winter 2011