Hoping for a Return to ‘Normal’

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For kids with T1D, disruptions are a part of everyday life.

The Oshima family (from left): Stacie, Andrew, Tyler, Evan and Mark.

By MARK and STACIE OSHIMA

Evan, our 12-year-old son, has Type 1 diabetes (T1D). T1D is an autoimmune disease in which a person’s pancreas stops producing insulin – a hormone essential to turning food into energy. It is unrelated to diet and lifestyle, and currently there is no cure for this disease that afflicts Evan and 1.6 million people in the United States.

It has been over six years since Evan was diagnosed with this terrible disease, and it’s hard to remember when his day-to-day experience reflected a more “normal” childhood — devoid of carb counts before every meal, warning alarms from blood sugar lows and highs, and hovering parents asking, “What’s your (blood sugar) number?”

With all that’s going on with the COVID-19 pandemic, the desire for “normalcy” is probably something that all of us can relate to. There’s no question that we’re looking forward to the day when we can go to the store without a mask, gather together with people we love, and take our kids to an actual school (in an actual building). And due to the tireless work of the medical and scientific community, we’ll get there soon; hopefully very soon. Our hope for a return to “normalcy” helps us endure the troubles of today in exchange for a better tomorrow.

That’s the same hope that adults and kids with T1D have — the chance to live their lives just like the rest of us do. And, while we’re not suggesting that T1D is comparable to a global pandemic, COVID-19 has certainly taught us how disruptive and challenging it can be when we can’t do some of the everyday things that perhaps we have all taken for granted.

Evan Oshima

Here are some of the everyday things that are a part of Evan’s day-to-day life due to T1D. Although he has worked hard at managing his diabetes, we are on alert every day, knowing that a miscalculation of his food carb count, insulin dosage, or mis-monitoring of his blood glucose can cause irreparable harm.

Before every meal, Evan checks his blood glucose levels and counts the carbs in his lunch. If his glucose levels are too low, he drinks juice and then waits 10-15 minutes for his glucose to rise to a safer range. Then, he can proceed with dosing his insulin and eating.

If his glucose levels are too high, he doses insulin and then waits 10-45 minutes before eating, as it often takes that long for insulin to kick in and bring his glucose levels down to a more stable range. Sometimes that means he waits while other kids have started (or finished) eating.

This year, it seems that the hormones associated with adolescence have made controlling Evan’s diabetes that much more challenging. At times, it’s as though insulin runs through him like water, ineffective against his stubborn high glucose levels.

Sadly, the short- and long-term effects of mismanaging T1D are devastating. If Evan’s blood sugar is too low, he can lapse into a hypoglycemic coma. If it is too high, he can suffer from ketoacidosis, which requires hospitalization. Both complications are dangerous and can result in death.

If Evan doesn’t manage his condition over time, the long-term complications can also include blindness, neuropathy, strokes, and heart and kidney disease. The consequences can be overwhelming.

Thankfully, JDRF (Juvenile Diabetes Research Foundation) is working hard to fund research to find better treatments, technologies, and a cure for Type 1 diabetes. On Nov. 1, our family will participate in the JDRF One Walk to help support this cause. This year, due to COVID-19, the walk will be a virtual celebration in lieu of an in-person walk.

While we admit it feels a bit uncomfortable asking for support for T1D when 2020 has been such a rough year, we value the importance of JDRF’s fundraising efforts because we believe that those suffering from T1D need and deserve a little hope — hope that one day there will be a cure and that they can lead the “normal” lives that many of us have taken for granted (pandemic or not).

For those who are able to make a contribution to help JDRF fund life-changing Type 1 diabetes research, we thank you for your support and the difference you are making in the T1D community. Our dear family friend Kristi Savacool is offering to generously donate $5,000 to JDRF when Evan’s Evangers raises $15,000, so your contribution can make an even bigger impact in the lives of those living with T1D.

Our hearts go out to those of you who may not be in a position to donate towards this cause during this uncertain time. Please know that we are thankful to have you in our lives and that your love and concern for Evan makes a huge difference to us everyday.

Regardless of your situation, we invite all of you to join Evan’s team, “Evan’s Evangers,” for this virtual celebration to help create a world without T1D. Go to: http://bit.ly/EvansEvangersJDRF

While we don’t know when a cure will be found, we hold on to the hope that one day Evan will be able to say that he used to have diabetes. Thank you.

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