“Lucas hadn’t been himself for a while. He was grumpy, cried a lot and didn’t want to play anymore. But what was especially striking, and what I found difficult to place, was his unquenchable thirst. He was only two years old, but he often drank two liters of water a day, which resulted in many wet diapers, and Lucas also lost a lot of weight.
In a period of a few weeks I saw a big difference in his behavior, so I decided to go to the doctor anyway. His blood was drawn there. His blood count turned out to be sky high: thirty-three, while that should normally be between four and eight. The GP immediately expressed the strong suspicion that Lucas had diabetes and took this seriously. I didn’t even know what awaited us then, but at that moment the ground was already sinking under my feet.”
“Of course I had heard of diabetes, but it was a far-from-our-bed show. It didn’t run in our family, nobody around me had it. I associated diabetes with a certain lifestyle – especially overweight – and older age Lucas turned out to be unlucky with type 1 diabetes.
This type can develop very suddenly and means that the pancreas no longer produces its own insulin at all. Insulin regulates your blood sugar. In type 2, too little insulin is produced or the body is insensitive to insulin. This form can be associated with a high weight and cholesterol level.”
Squirming, screaming toddler
“Lucas was immediately sent to the hospital for further examination, after which we were referred to Diabetes Central, a treatment center for children and young people with diabetes. My friend Jan-Jaap had joined us in the meantime. We tried to stand up for Lucas, but we were terribly shaken. At the diabetes center we were given syringes with insulin and instructions on how to do everything. We had to become specialists in the field of diabetes in a rush.
When we got home, our whole table was full of medication. We had to go poke Lucas, which of course he hated. I was also heavily pregnant with his sister Sarah at the time. I stood there with a big belly, grabbing a thrashing, screaming toddler to stab him. It is so unnatural to hurt your child, you want to protect your child from all evil at all times. Tears often rolled down my cheeks as I jabbed Lucas.”
“Lucas is now four. He has a pump on his leg with which we can administer insulin and there is a sensor on his arm that measures his blood values. We can monitor his blood sugar throughout the day via an app. If it gets too low, we can Lucas get a so-called hypo and pass out or in the worst case even go into a coma. So if I see that his blood value is too low, I give him fast sugars such as Dextro tablets or a banana. I notice that his values just skyrocket, in other words a hyper, then I give him insulin.
Everything he eats or drinks must first be weighed and then we calculate how many carbohydrates it contains. We are regulating this all day long. Sometimes Lucas is hungry while he has a hyper, sometimes he has to wait half an hour for his blood counts to drop and he can eat. He doesn’t understand that very well yet, because why are others allowed to eat something? We are constantly fighting about this.”
Eating out is a gamble
“And where other families can go out for a carefree meal, a visit to a restaurant presents many challenges for us. At home I know exactly how many carbohydrates are in something, but in a restaurant I have to ask the kitchen what the ingredients are. And I always have a small scale in my bag.
I don’t want to be confined to my house and it is also good for Lucas to participate in ‘normal’ life. But eating out remains a gamble, sometimes his blood value becomes too high or too low.”
“Lucas has been at primary school for a few weeks. There was a whole process that preceded that, in which an external coach helped us and the staff at school to get off to a good start. The teachers learned how to administer insulin to Lucas and what to do in case of a hypo or hyper. I deliberately started working close to school and Jan-Jaap and I always have to be available. Sometimes we have to drop everything immediately and race to school, for example recently when Lucas’s pump broke .
Sometimes I have a work meeting and then I turn out to have three missed calls from school and the alarm has gone off six times: if his blood values rise above thirteen, a ‘hyper alarm’ goes off. And if his blood count drops below four, the ‘hypo-alarm’ goes off. Even at night the care for Lucas continues. If his blood sugar is too low, we will give him something to eat and if it is too high, he will receive insulin. On average, we have to get out at least three times a night.”
Farewell to ‘normal’ life
“Yes, it is care-intensive and quite tiring. But I turn a button and just keep going, for my child. Because if I really consciously reflect on how our lives have changed since the diagnosis and what impact his illness has, then I can I couldn’t stop crying, especially the first year I was really down, it felt like a kind of grieving process, I had to say goodbye to the ‘normal’ life and my healthy son.
It was also tough for me and Jan-Jaap’s relationship, all our attention and time went to the children. We have been going out for dinner for six months now, our babysitter and the grandpas and grandmas are trained in caring for Lucas. But we’re not letting him go out to sleep yet, I don’t want to give our parents such a broken night.”
“As a parent you would like to do everything perfectly for your child, but that is not possible. That is difficult to accept. I wish Lucas so that he can live carefree and free, and not be hindered by his illness. It breaks my heart that he has to deal with health problems at such a young age, he wants so much to be ‘normal’, no different from other children.
The pump on his leg has to be changed every three days, which remains a struggle because he hates it and I go through the ground every time because I have to hurt my own child. The daily struggle of regulating his blood sugar keeps us busy non-stop and it consumes energy. We will never live carefree again, that feeling now seems to be gone forever.”
Afraid of the future
“But Lucas is much more than just a diabetic. He is bright, sensitive, cheerful, very social and he likes to go to school. And he is a little clown, always making jokes. I enjoy it when he dresses up and makes us a Above all, I am a very proud mother of two beautiful children.
But sometimes I get scared when I think about the future. My biggest fear is that Lucas will have complications as he gets older, such as kidney failure, heart failure or an amputation. That is why we hope that there will be more money for research into diabetes, it would be fantastic if this disease can be cured in the future. And that we go from never living carefree again, to living carefree ever again.”
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