From diagnosis to purple holster
I remember quite well – it was June 2009 when, due to frequent thirst and mood swings, we decided to take our then four-year-old daughter to the doctor on suspicion of diabetes. The results were ready in an hour and the same afternoon, the general practitioner put the result of the BG measurement (30 mmol / L) in our box and urgently referred us to hospital in Vinogradska.
Like any parent who learns overnight that their child is suffering from an incurable chronic disease, this information literally crushed us – I knew nothing about diabetes except that people constantly have to pee. It may be easier when you are older and you are diagnosed with type 2, but how to explain to a 4-year-old that he is no longer allowed to eat chocolate, ice cream, cakes, etc. Like I said, everything fell apart in a second.
The good thing about the whole story is that I react well in situations like this. While some less important nonsense completely throws me out of tact, I catch myself like this and with a great deal of patience and optimism I start to see the only thing that matters now – how to proceed.
The same day when Ira ended up in Vinogradska, the news reached her grandmother, who as is typical of her, received her with a cry like: “Oh mother, how come now, my poor child, poor thing!” such discouraged outbursts are completely out of step, especially when it comes to my own child. The conversation with my grandmother that evening was simple: “Grandma, things are as they are. Take the time while Ira is in the hospital and come to terms with it. If after that I feel that you transfer your nervousness and negative energy to her and turn her from a (relatively) healthy girl into a difficult complex, you will see her the next time she turns 18. “
I know, some of you will say it’s too rude, that everyone reacts differently. You may be right, but when I feel that someone could do something that will go to the detriment of my child, who has just been given a lifelong diagnosis, I lose patience and tact whoever it is.
Thank heavens (or whoever was on duty up or down), we solved that problem and now we had to adjust our lives to the new rules that were very strict and defined.
The next turning point in our diabetes saga was the entry of the insulin pump into our lives, 3 years after the initial diagnosis. My wife, who has taken on most of the responsibilities around Ira, her meals, and monitoring her BG, has been quite skeptical of a new technology that should take on such a delicate task as constant insulin delivery:
– “I’m not sure, who will learn all this?”
“Well, let’s take it easy, as time goes on.”
“But she has to carry it with him all the time.”
– “No pen poking?”
– “I do not know”
As in any marriage, any decision regarding a child was preceded by extensive online research, numerous controversies and putting the pros and cons on paper. We decided to try the pump, so where does it take us. And it has led us to no longer knowing how to live without that “ultimate diabetes gadget,” which even Ira agrees with – she says she doesn’t remember those first few years of pen poking and can’t imagine doing it now.
We remember, but agree that we would not like it to come back.
Year after year, daily monitoring to see if there has been any progress in treating (or curing) diabetes has brought us to the Abbott page which advertised some unusual gadget called Freestyle Libre. The discussion about the possible introduction of this method of measuring BG into Ira’s life sounded very similar to when we talked about the pump, with the difference that this time Irina’s diabetologist was not overly inclined to it either:
– “You know, these are still new things, we have to wait for it to be tested a bit.”
– “But it’s been tested for years!”
– “I know, but it could still be wrong.”
– “Numerous studies have shown that it measures excellently and that, as a rule, HbA1c improves soon after the introduction of such a measurement.”
– “I don’t know, I’m not into that”
Completely rebellious, we decided to get hold of that technological marvel as well. You guessed it, Libre came and stayed, as did the pump, and now we have a child walking around like a “Robocop”, equipped with all sorts of biotechnological accessories.
And Ira? How does she look at it all?
At first she often used to ask why she got diabetes, while lately she almost never asks. I tried to explain to her that it had nothing to do with anything but the cosmic lottery and the constellation at the time of her diagnosis. There is no solid thing to give her proof of why she got it. She just got it and that’s it.
But those moments are less and less. She lives with a pump and Libre, eats everything she wants to eat and what her peers eat (indeed, and healthier), plays sports and no longer cares about whether she has diabetes or not. She has, she will have it and it only depends on her how she will go with it through life – if she will watch out for blood sugar, she will experience a deep old age, and if she doesn’t, she could have problems. Also, I think that a child at a certain age should be made aware of this in order to be able to approach diabetes the way it should be – seriously and responsibly.
Of the other problems, I would mention just one that has been a huge torment for us over the last week:
– “Dad, the new pump is black.”
– “Yes and?”
“I don’t like black.”
“Well, what do we do now?”
– “There’s a silicone case to order, so if we could…”
“Sure, what color would you like?”
And there she is, running around with a black pump in a purple holster, eating ice cream in the park with a friend, and we’re still searching the roadless internet in search of even newer and more advanced aids. And when we find them, I know exactly what awaits me:
– “I saw something new for measuring BG, some implant, it takes 6 months.”
– “I don’t know, I’m not sure„ ”
And life with diabetes goes on.