What it’s like to be the mom of a kindergarten-age child with diabetes
All of us parents deal with our child’s diabetes somehow. Sometimes easier, sometimes harder. There are good, less good and bad periods. One thing in common is that there is no surrender, there is no looseness and we must always be vigilant. The things we experience every day are not always visible to everyone on the outside, but diabetes is lived 24 hours a day. There is no activity that can exclude him, nor can we forget that he lives with us. Our formula for overcoming diabetes is to keep sugars as close as possible to those of healthy children, because only such sugars in the long run guarantee a life without the complications of the disease.
Here’s how, through the eyes of always-concerned moms of a child with diabetes, every day, ordinary situations in our family look, and I believe it’s similar with others.
While the child is in kindergarten, she is taken care of by a kindergarten teacher. The Teacher is great. He calls at the agreed time to consult about the snack and the required amount of insulin.
As soon as her teacher calls outside the agreed time, I stop breathing for a moment so that I can hear why she is calling as soon as possible, because as soon as she calls outside the agreed time, something is not according to plan.
If her teacher isn’t on shift, I go to kindergarten shows with the kid.
I am happy because the child is well accepted in the kindergarten and the teachers take good care of her. Many parents do not even manage to enroll their child in kindergarten, due to misunderstandings they encounter, and the child is not provided with the necessary socialization. You would be surprised how common this is.
Going to the city / park / neighbor / anywhere outside the house
- We check to see if we have enough glucose, if we have a sensor reader.
- We brought a pre-prepared snack because we can’t, sorry, we don’t want to buy anything quick at the bakery / store because it will cause sugar chaos.
- Going somewhere for the whole afternoon / day, e.g. to a cottage for harvest, celebration, barbecue, etc.
Packaging when going to any and especially all-day activity, can never be neglected or forgotten, and it includes the following:
- dextrose 2.
- sugar meter
- insulin pen if the pump snaps
- extra ampoule of insulin just in case
- spare pump set
- finger blood meter and enough strips
- cotton swabs and alcohol wipes
- juice just in case or liquid glucose
- low carb snack, sandwich, biscuit or cake, etc.
Most of it fits in a diabetes bag, and the rest in a cooler bag, to isolate the weather effects on insulin and the rest.
And then, with all the preparation and experience, a day like this happens:
- In the car, while mentally counting all the necessary diabetes props, I remember that I did not bring glucagon (an injection that raises blood sugar if the child is hypoglycemic and unconscious), just in case.
- After only half an hour of arriving at the destination, the sensor on hand fails. Of course, the backup sensor is the only thing that is not packed of all the diabetes equipment. Luckily, a finger gauge is packed so we will know the current sugar value, but not the movement trend.
- Adrenaline, meals and high activity have different effects on sugar and it is difficult to predict the trend of blood sugar movement and dose insulin. Moms are known to have some magical powers, strong intuition, sixth sense and some more abilities, but situations like this are a pure lottery to predict.
- We remained the last guests at the party until I was convinced that her blood sugar had finally stabilized (calculation of active insulin, movement, and the meal she ate). Still, a longer drive home awaits us, during which the child will fall asleep and it is impossible to say that he is not well from low sugar, and I want to avoid standing by the road and measuring with my finger, if it is not force.
Going to the cinema or playroom
- I arranged with the child to go to the cinema, feed her, give her insulin and she wishes that she would rather go to the playroom today, and to the cinema some other day. In the meantime, I forgot that I used to give the usual insulin with a meal, because then I calculated that the child would sit in the cinema for 90 minutes.
- And so while she is playing in the playroom, I occasionally measure her sugar levels because she is extremely active, and in such situations the sugar can drop or rise sharply.
- For the last 15 minutes in the playroom, I see sugar levels suddenly rushing down and I start feeding her with dextrose. The sugar meter already shows very low values, for example 4.0 with a trend of a sharp drop, and at that moment I calculate exactly: when the child ate, before she got insulin, how much insulin is still working, I count how much glucose she has already received and how much needs to start acting.
- The child is sweaty from play and I am from torment.
- At that moment, I realize that I did not bring a device for measuring blood sugar from my finger, and that is the only way I can see what the exact condition in the blood is, because the one on her hand is actually late for the real condition from the blood and in the trends of rapid rise or fall of sugar. Not reliable. This means that it is possible that it shows hypoglycemia, and the sugar is already in normal values.
- We leave the playroom because an hour has passed and I am constantly questioning her how is she.
- So tired we sit down in a cafe and I watch her blood sugar now, because of all that dextrose and semi-successful more math, skyrocket. We can only eat when values normalize.
When my child, who has diabetes, is not with me
- I have an irresistible urge, with my cell phone or remote, to read sugar to my other child on a sensor on her/his arm.
- I notice that I lack a constant, already built into my body rhythm of measuring sugar.
- For a moment I feel what carelessness looks like.
The child’s departure for training.
- We wear everything usual / obligatory like when we go to the city + sports equipment.
- I can’t go anywhere like other parents, but I’m by the field all the time watching the child, and when she comes to drink water I measure her sugar, so I intervene if necessary.
- As I wait and surf, for a moment I envy all those parents who then don’t have to be in the gym and supervise the child. Still, I enjoy watching my child have fun and progress and I am happy.
- I think how great it would be if, while the child is in training, I do my training in that same complex. I believe I will do that one day, when I worry less and she grows up and will be able to take care of herself, at least for 1 hour.
Nights are, in fact, the hardest part of the whole diabetes story. The child is sleeping, and we would like to sleep, and a lot of things can go wrong.
- We cannot leave a child in the care of anyone but ourselves. We alternately wake up at night, 2-3 times, to control our sugar.
- When we wake up, for example, at 02:00, we have to make sober decisions about the necessary additional amount of insulin, or the amount of glucose that should be taken so as not to fall into hypoglycemia.
- Sometimes, rarely, but it happens, at the coiled clock I get up, turn it off and go back to sleep. In the morning, when I wake up, I REALIZE that I don’t remember waking up and running off to check the baby in the room next to mine. Until I see that I am breathing well, I feel guilty all day because I fell asleep.
- There is a certain fear when I open the door of the room at night because I am afraid of what condition I will find the child in.
- Sometimes when I enter a child’s room, the child already sits down and opens her mouth thinking she has to eat something or extends her finger to measure her sugar.
- Often after waking up and measuring I can’t fall asleep right away even though everything is fine at the moment.
- If I wake up and the sugar level is high, so I give insulin. I can’t sleep because I’m thinking: Did I give enough dose? Or too big? Or maybe too small? When I finally fall asleep, it’s already time for a new check, or it’s morning and time to get up.
- There is a very small circle of people to whom we can leave a child in care for at least an hour – the number fits on the fingers of one hand.
- I suspect high or low sugar in every child’s inappropriate behavior. So, whatever the situation with the child, if he gets angry, cries, hysterics, locks himself in the room, we must first eliminate low sugar as the cause, because the child just does not always recognize the symptoms, or does not react properly. Sometimes it’s really low sugar, sometimes it’s high, and sometimes I forget to measure it, so I punish the child and only later find out that the sugar certainly contributed to that bad behavior. When I realize this, a feeling of sadness overwhelms me.
Mother of a child with diabetes
- All of the above is normal for her.
- It is normal for her until she thinks a little and then she understands that none of this is normal, but it is every day.
- She has not slept for more than 3 hours in a row since the diagnosis of diabetes.
- And after a sleepless night, everything that needs to be done that day should be done.
- She occasionally thinks that, for the sake of heightened care for a child with diabetes, he is neglecting a child without diabetes. When she realizes that this is true, she decides to correct it, having no slight connection how.
- When she happens to forget to measure her sugar for more than 2 hours, she laughs contentedly for a moment because she thinks she has been living normally for those 2 hours, like before diabetes.
- She has seen that there are also moms who do not have their blood sugar measured at night and she does not understand how they manage to do that. She hopes she will succeed too.
- As she looks at the data on the car’s trip computer, everything reminds her of the BG’s measured values. A lot from the immediate and distant future instills fear in her and she thinks about how to empower herself and her child for all challenges.
- When she is sober, she realizes that her child with diabetes tolerates everything quite well and that there is no room for grief, because she grows into a cheerful girl in spite of everything.
- She knows that some things will be easier and some harder as he grows up, so he concentrates on living in the moment and enjoying it (she doesn’t always succeed and it takes a lot of work to make her aware of it again).
- She is happy that her child’s illness is “just” diabetes, not something worse or worse.
- Her child is absolutely perfect for her just the way she is and it is not difficult for her to play her pancreas all day, because he is still there, now, with her and she is grateful for that.