Barb Wagstaff remembers the trip from her family doctor’s office to the hospital with her then-two-year-old son, Adam like it was yesterday.
Seeking an explanation for Adam’s excessive urination and unexplained weight loss, and the white spots on his tongue, Wagstaff had taken him to the doctor, where her fear was confirmed: Adam had type 1 diabetes (T1D), an incurable condition where the body produces little or no insulin, the hormone that transports glucose from the foods we eat into our cells for energy. Without enough insulin, glucose can't get into the body's cells and instead builds up in the bloodstream, causing symptoms like Adam’s. Her son was very, very sick.
Fortunately, Adam was whisked straight into intensive care, where his blood sugar levels were gradually brought down to normal, although “normal” would be the last word Wagstaff would use to describe her emotions that night.
“I was stunned, numb, shocked, terrified, lost, unsure and in a haze when my son was first diagnosed,” says Wagstaff. “I didn't truly understand what was happening, beyond the fact that whatever this was, it could be fatal if left untreated.”
It’s easy to sympathize with Wagstaff’s shock and fear, but much more difficult to understand the full range of emotions a parent feels after being told a child has a life-threatening condition. If you have recently found yourself in Wagstaff’s position, endless questions may be running through your mind: What will the impact be on the rest of my family? Will my child get the required support? How will my child stay safe and healthy day-to-day?
Although that fateful day at the hospital was marked with a sense of hopelessness for Wagstaff, today, Adam is a happy, healthy and active young adult (albeit with a few more responsibilities than most young men his age). Drawing from the experience of parents like Wagstaff, here’s some advice to help you navigate the sea of emotions that may be threatening to overwhelm you if your child has recently been diagnosed with T1D.
Understand and help others understand
The key to helping your child live a healthy life with diabetes is to understand the condition, its symptoms and the treatment available. Know what you can control and help others do the same. Start by educating others about the condition by offering information resources to family and friends. Despite the growing awareness of T1D and recent advances in treatment, many people aren’t familiar with the condition and its impact. For example, of the close to two million Canadians living with diabetes, 90% have type 2 diabetes (T2D), a condition that can typically be prevented or postponed through healthy diet and exercise. But T1D can’t be prevented or postponed, and there is no cure as yet. People living with this condition depend on insulin injections to stay alive.
Depending on your child’s age, you might also provide teachers and school administrators with information so that they’re better equipped to help manage your child’s condition and be able to respond in the event of an emergency.
Access support networks
One of the benefits of living in an age where “Google” is a verb is that we have access to reams of information at our fingertips. While your healthcare team will provide the foundation for your child’s ongoing health and wellness, you’ll be able to find many valuable resources on the Internet.
But don’t limit yourself to searching online. Wagstaff recommends connecting with your local Juvenile Diabetes Research Foundation (JDRF) chapter, where you’ll find an invaluable support network and be able to forge strong relationships with other families.
“Go to local support groups or diabetes events through JDRF,” she says. “Share on social media sites that have been created to help and support parents of children with diabetes.” Whether it’s volunteering for fundraising events or helping to raise awareness through social media, getting involved can be a very gratifying experience.
Take time for yourself
As with any life-threatening condition, the diagnosis of T1D affects not just one person, but everyone around that person as well – particularly close family and friends. Like Wagstaff, you may feel like you’ve got the weight of the world on your shoulders, and that can put excessive strain on other aspects of your life.
“It’s normal to have a range of emotions, which can vary day to day,” says Wagstaff. “It’s important to make time for your partner, any other children and yourself.” She suggests dedicating some time each day to do something for yourself, whether it’s going for a bike ride, reading a book or watching a movie.
“Your child can’t be healthy unless you are, so ask for help if and when you need it. Above all, keep yourself healthy and vibrant,” says Wagstaff.
Instill confidence in your child
From an early age, do everything you can to give your child the confidence needed to manage his or her T1D responsibly. Although this depends on the age of your son or daughter at diagnosis, keep in mind that you can’t assume accountability for management during every waking hour -- this will become your child’s responsibility in life.
You might start by having your child take charge of a small task once a day, such as checking blood sugar levels and recording the results, or administering his or her own insulin.
Over the years, Wagstaff has taught Adam to be accountable for his health by testing his own blood glucose and giving himself insulin via his pump.
Take life four hours at a time
The journey can seem daunting, with little relief in sight. Wagstaff suggests taking life four hours at a time. “A month, a week or a day can become exceptionally overwhelming when dealing with a child with diabetes,” she says. “And trying to find a ‘perfect’ blood glucose day is almost as elusive as searching for a unicorn. Four hours, however, is manageable and is also the approximate length of time that rapid-acting insulin works.”
Above all, reassure your child that although life has changed, diabetes doesn’t have to limit childhood fun. By sharing the stories of other children and adults with T1D, such as CFL star John Chick, you’ll show that through responsible management, diabetes doesn’t need to block the road ahead.