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Edward is the father of a child with type 1 diabetes. He recently shared a bit about his life with me.
Be sure to also read Veronica’s story about her daughter’s type 1 diabetes impact on their family and Bonnie’s story about being called a helicopter mom when all she’s doing is working to keep her child alive.
These are Edward’s own words.
When Samuel was younger, the disease was entirely ours as parents. We worried about every piece of food he put (or didn’t put) in his mouth, every change in his demeanor, every time he went to sleep, every time he went to the bathroom, every time he was more thirsty, every time he misbehaved (normal childhood development or a symptom of high/low blood sugar), and so on.
Now that he’s a little older (almost 8), he is starting to be more aware of his health and his disease, and is even taking responsibility for his testing, his carbs, and his dosing. We reinforce that he can do anything he wants, that the diabetes simply comes along for the ride, just another thing to take care of – he has diabetes, diabetes does NOT have HIM.
Emotionally, we continue to struggle since we know that his disease will affect him every moment of every day – there’s no escape. Yet we remain hopeful that research and technology developments will reduce diabetes’ effects and complications, and make it easier to manage on a daily basis. We have had our share of sadness and frustrations, but we can also find joy and pride with the disease: Samuel senses his blood sugars accurately; he scores a goal at soccer while wearing his pump; he checks his blood sugar publicly and answers strangers’ questions about his diabetes; at 6 years old he biked the entire 8 miles for ADA’s Tour de Cure; he never takes off his diabetes alert bracelet; he empathizes with his brother when his brother is sick.
We are very lucky in all the above. The personnel at Samuel’s schools (he was diagnosed in preschool) have always been supportive and helpful; Samuel’s grandparents and other caregivers have risen to the challenges of helping to care for a young child with diabetes; Samuel’s endocrinologist is the most caring doctor we’ve ever had; we have each other.