The first question people sometimes ask me is often how severe Tije's condition is? And I find that such a turn-off. Because that's just not how it works. It's not a matter of degrees or a scale on which you can measure it.

<h2>Intuition Can Also Save Lives</h2>
The diagnosis came in the middle of a hectic period. While Hilde and Chris were busy building their dream house, they saw their son Tije developing more and more complaintssymptoms. As a baby, he already suffered from fatigue and eating problems, but when he turned four, things quickly went downhill. He started wetting the bed, no longer wanted sweets or cookies, and only drank water, Hilde explains.

At that time, she worked as a management assistant in the hospital. Through my work, I learned about the symptoms of type 1 diabetes. I recognized the signs in Tije and already knew that this had to be it. But her suspicions were not immediately taken seriously by the family doctor. We often went by, but my concerns were always dismissed. Eventually, I had enough and spoke resolutely: 'You are going to test now, or I will do it myself.'

That first blood glucose test, on an empty stomach, showed no abnormalities. Yet Hilde continued to feel that something was wrong. When the doctor later in the day refused to test again, she decided to submit urine for examination. A little later, the assistant called me with the message: 'You need to go to the hospital immediately.' There, Tije collapsed and became unconscious due to extremely high blood glucose levels. The pediatrician said it was a miracle that we were on time. That one moment left a deep impression. It was so intense and impactful. Everything changed in an instant.

<h2>The World Turned Upside Down</h2>
The first days after the diagnosis were extremely tough. Constant finger pricking, injecting insulin, nothing was without worry or went without saying. Within a week, Tije received an insulin pump and glucose sensor, but Hilde and Chris felt overwhelmed. It was as if they stepped into an unknown world without a manual. We were sad, angry, and felt completely lost. We received hardly any explanation in the hospital and especially missed practical guidance from someone who helps you better prepare for a different normal. When we came back home, we felt like new parents bringing their baby home for the first time: and what do we do now?
The reactions from the environment sometimes made it harder. Many people think that living with diabetes only means watching your diet. But it is so much more. You live with it day and night. A little more understanding and awareness would make a world of difference.

By now, Tije has a pump and glucose sensor that communicate with each other via a closed-loop system, connected to a smartphone. His parents can follow his glucose levels via an app, which gives them a sense of security but also constant alertness. You know everything, every detail, and that can sometimes be overwhelming, says Hilde. Yet the family has found a rhythm.

It took time, but Tije has adapted to the new routine. He calls his parents if he has questions about his glucose levels at school and dares to make more decisions on his own. But it remains a learning process, says Hilde. He is still young, and for example, gym class or busyness can sometimes surprise him. Then he has to learn to step back and take care of himself first, which is difficult at that age.

<h2>Always Seeking Balance</h2>
Living with type 1 diabetes requires constant adjustments and remains unpredictable. We have figured everything out: what food works best and how Tije's body reacts? It is always trial-and-error, says Hilde. Every day we have to reassess what is needed, and what works today can turn out differently tomorrow. That's why discussing with my husband is so important. Even changes like traveling or illness have a direct impact. With illness, we often notice changes in his blood glucose even before the doctor, which helps in the conversation with the doctor.

<h2>The Support of Healthcare Providers is Indispensable</h2>
Hilde and Chris have a strong team around them. Our care team, with a diabetes nurse and pediatrician, is really a pillar of support. If we don't know what to do, we can reach a doctor 24/7 via an emergency number, says Hilde. That gives certainty, but it can sometimes be frustrating when little advice comes. You hope for answers, but they are not always immediate.

Yet the family greatly appreciates the collaboration. They tailor the treatment to what works for Tije, listen to our ideas, and explain why something can or cannot be done. Their medical expertise, combined with our experience, feels like a good combination.

The conversations now mainly focus on Hilde and Chris. That will change as Tije gets older, but for now, the ultimate responsibility lies with us. And that is quite intense, explains Hilde. You always have to think ahead: what is on the schedule, what needs to be arranged? Yet the family tries to be more conscious about spontaneity. Our last vacation to Gran Canaria felt like a victory. We could go away together without feeling completely overwhelmed.

<h2>The Biggest Challenge: Letting Go</h2>
It is important for people to realize that living with diabetes always and everywhere requires attention, says Hilde. What I sometimes find difficult is that people judge without understanding how much impact it has on Tije and our family. Besides the practical challenges, there are emotional obstacles. Tije's fluctuating blood glucose levels affect his mood. Sometimes he is exhausted and has a short fuse. Nights where we have to get up three times are no exception. That wears you out as a family. Yet Hilde remains positive. Tije is incredibly resilient. He always knows how to make the best of the situation.

<h2>Together Out, Together Home</h2>
After four years of living with type 1 diabetes, Hilde and her family have found a certain routine, but the constant care never fully lets them go. It is the small moments that keep them going. A board game with the family, relaxing with Chris in the sauna in the garden, or just quietly drinking a cup of coffee after dinner and going over the day – those are our valuable moments, says Hilde.

Their family motto is simple but powerful: Together out, together home. Despite all the challenges, they remain positive and enjoy each other and life. The little things make the big moments, says Hilde. And those often turn out to be the most valuable. As a family, we always have fun, stay strong, and show a lot of empathy. We always consider each other and form a close-knit team.

Heeft u vragen of wilt u meer weten? Wij zorgen dat u zo snel mogelijk geholpen wordt.

Wij staan klaar

Hilde (35) says it without hesitation, her voice determined. She is the mother of Koreanne (10) and Tije (8), married to Chris, and lives in Uithuizen, the northernmost point of the Netherlands. Their lives changed forever when their son Tije, then four years old, was diagnosed with type 1 diabetes.

No More or Less Severe – Living with Diabetes is Always There

TYPE-1-DIABETES

DIABETES

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