LIVING WITH TYPE 1 DIABETES

“He has Type 1 Diabetes.”

At first I thought I’d heard the words wrong. But it was true.

My oldest daughter had just learned that my 11-year-old grandson has Type 1 Diabetes.

No one else on either side of their family had ever been diagnosed with Diabetes.
But my wise daughter had taken her son to his pediatrician because she’d detected the following warning signs:

• An uncommon thirst. For instance, a week earlier my grandson was at my home for dinner and asked countless times for more sweet tea. Thinking he was thirsty from ball practice, I indulged him. But his thirst seemed unquenchable.

• My grandson started taking a water bottle into his room at bedtime. When my daughter asked him to leave it in the kitchen, he became uncharacteristically upset and insisted he couldn’t get through the night without drinking water.

• He began getting up several times at night to use the bathroom.

The diagnosis was quick. But because his condition was unstable, my grandson was sent to a hospital emergency room.

During the hospital stay my grandson’s condition was stabilized and my daughter and son-in-law received a crash course on living with Type 1 Diabetes. Then they were released to go home and figure out how to manage the disease.

It hasn’t been easy.

 

What is Type 1 Diabetes

• Type 1 Diabetes is not the same as Type 2. Only about 5% of people with Diabetes have Type 1.

 

• Type 1 (previously called insulin-dependent or juvenile diabetes) is usually diagnosed in children or adolescents, but it can actually develop at any age.

 

• If you have Type 1, that means your pancreas is making little or no insulin. The condition presently has no cure and cannot be reversed. It must be managed by either injecting insulin or infusing it with a pump.

 

• Without insulin, blood sugar builds up in the bloodstream and can cause life-threatening complications.

 

What does living with Type 1 Diabetes look like?

For the rest of his life, my grandson’s blood sugar will have to be monitored day and night. At the beginning he checked his blood sugar by pricking his fingers several times a day. Then he gave himself insulin injections to keep his body functioning properly.

Today he wears a special monitor that keeps track of his blood sugar levels, but the monitor itself must be checked and recalibrated. He also wears a special pump that infuses insulin into his body.

Every bite of his food is measured and carbohydrates are counted to determine how much insulin to add.

Whether he’s at home, at school or on the baseball field, my grandson’s life as a diabetic is different than it would be if he did not have the disease.

In many ways learning to live with Type 1 Diabetes has been like adjusting to life with a newborn baby.

 

How living with Type 1 Diabetes is like adjusting to life with a newborn:

A whole new world

Living with Type 1 Diabetes has introduced us to a new world we knew nothing about. Even though my daughter and son-in-law have faced the disease with courage and determination, deep inside they know they aren’t always absolutely certain about what to do. Nevertheless, there’s a tireless determination to create a new normal.

 

Broken sleep

For the past several months, consistent sleep has been a thing of the past. When my grandson was first diagnosed, my daughter and son-in-law were up several times during the night, pricking my grandson’s fingers and making necessary adjustments. It takes time to detect proper insulin dosages, so they watched him 24/7 until they felt confident they had things under control.

Today there are nights when everyone gets a good night’s sleep. But there are just as many nights when my daughter and son-in-law are awakened by my grandson’s glucose alarm, sometimes several times.

 

Advice Overload

My daughter and son-in-law are wise enough to elicit help from many different sources. Advice comes from everywhere. Well-meaning friends and family members, other parents with children diagnosed with Type 1, Google searches and Facebook groups amass a valuable but overwhelming volume of information. My daughter and son-in-law patiently sort through it, keep what they believe will work for their son, and file or discard the rest.

 

Equipment

Like a new mom packing a diaper bag, my daughter makes sure my grandson carries a survival bag at all times. Living with Type 1 Diabetes means he always has on hand things like alcohol swabs, needle pricks, insulin, an emergency kit, and snack foods.

 

New Gadgets

Thanks to modern research and development, people with Type 1 Diabetes have access to new gadgets that make it easier to manage the disease. My grandson’s glucose monitor did away with constant finger pricks and his glucose pump keeps him from having to give himself constant injections.

Although my daughter had planned to delay the use of Smartphones for her kids, my grandson’s phone has proven to be a valuable tool for managing Type 1. Coupled with a glucose monitor, it sends notifications to my daughter, son-in-law and other family members when his blood sugar level is dangerously high or low.

 

Sibling rivalry

It was inevitable. My grandson’s condition requires a lot of attention, so naturally his younger brother and sister (who happen to be twins) began to feel a little left out. My daughter and son-in-law did a lot of explaining and had a few family pow-wows to help the younger siblings understand that this new way of life will require temporary adjustments and patience from everyone involved.

 

A village

Life with a newborn is easier when parents have a good support system. The same is true for someone living with Type 1 Diabetes. My daughter and son-in-law educated both sets of grandparents as well as my grandson’s teachers so we could all help in the management of his disease.

With help from understanding family members and friends, my grandson is able to play baseball, attend overnight birthday parties, and enjoy an active, full life. During our annual Cousin Camp, my husband and I were able to successfully manage all aspects of my grandson’s needs because we’d been well-trained and my grandson was a huge help.

 

New budget Items

Insulin is costly. But it’s a non-negotiable expense. Fortunately my daughter and son-in-law’s medical insurance covers much of the cost, but that’s not the case for everyone.

My grandson’s insulin monitor requires sensors that must be changed every 10 days. On top of that, his insulin pump must be changed every 3 days. And there’s the cost of regular bags of supplies for emergencies.

 

Growth

My grandson is thriving. Since his diagnosis a few months ago he’s grown several inches and gained a few pounds. More than that, he’s  grown in maturity. He’s overcome his fear of needles. He’s developed tons of self-discipline as he patiently calculates carbohydrate counts before eating (even when he’s really hungry). And he takes responsibility for helping with the management of his daily insulin intake.

On top of all that, my grandson has learned to cope with feeling different. Because he has both a monitor and a pump attached to his body, both children and adults sometimes stare out of curiosity. When his blood sugar gets high or plummets at school or in the baseball dugout, his glucose alarm goes off and brings him unwanted attention. So my grandson has learned to patiently explain his condition to people who are curious or who need to know how to help him.

 

A silver lining

More than anything, my grandson is learning that, in the loving care of his parents, he’s safe. My daughter and son-in-law turn my grandson’s glucose alarm off at night to allow him a solid night of sleep. But they never turn their own alarms off. So when his blood sugar level gets too high or too low, they get up and tend to him. They’ve arranged their lives to accommodate whatever he needs.

When the weight of Type 1 gets a little hard for my grandson to carry, his parents are right there to help lighten the load and strengthen his resolve. Together they’ve been a model of grace and courage that I believe will direct my grandson’s path in whatever else comes his way.

Living with Type 1 Diabetes requires adaptability, education, consistency, flexibility, understanding, a financial investment, and patience. But modern equipment, knowledgeable health professionals, and a wealth of Internet-accessible resources have made living with Type 1 Diabetes more manageable than ever. And research indicates that a cure may be on the horizon.

My grandson’s symptoms developed suddenly with no prior warning. Here are the symptoms of Type 1 Diabetes to watch out for:

Symptoms of Type 1 Diabetes

• Increased thirst
• Frequent urination
• Bed-wetting in children who previously didn’t wet the bed during the night
• Extreme hunger
• Unintended weight loss
• Irritability and other mood changes
• Fatigue and weakness
• Blurred vision