Manageable

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Well, it’s done. Day #1 of Diabetes Daycare is complete.

And I feel like puking.

Maybe it’s the hospital food I ingested ever so willingly. Or the millions of coffees I drank to sustain my energy throughout the day – or maybe it’s just that I feel sick because my kid has a terrible disease, a manageable but terrible – chronic invisible disease. Whatever it is, I feel pukey.

The day was long and though it was certainly educational to the hub and I, to Bear it was boring with a few sides of unwanted f’ing needles…not to mention we had promised him some time in the play center they have there, and by the time we got there it had closed. That was a hard moment. But we persevered, learning about Bear’s failing pancreas and the amount of time that it will take for the remainder of his insulin, 5% – 15%, to wear off – on average 6 months – they call this the “honeymoon period”. Right.

Some honeymoon!

We were shown his diabetes ‘equipment’ (for lack of a better brain to give me a better word at this moment). Pens – that are not pens, but needles for injecting the insulin. A Glucose meter, it’s many strips and the “finger poker” to check his blood sugar levels. The pee sticks to measure the ketones in his body and the pamphlet on what we can feed him, what we can’t, when we can, how much we can feed him and the ‘free’ foods he can eat. We also got a list of the foods that are dangerously high in carbs. We were explained, in detail, what was happening to the cells in his body and that none of this was our fault. They made no claims that this was, in any way, an easy disease to deal with. Nor one we could ever have any room for error with. They did say however – as the books say, and as my friends and family say, and as many times as they could say – that it is ‘manageable’.

Yes. I know. It’s manageable.

But I don’t want to hear that it’s manageable. I know it is, it has to be – or how would he have a chance at surviving? I want to hear about the stuff that isn’t manageable. The bad stuff. The scary stuff. Because I know it exist. I know it because of the letter template that I downloaded for the school. No letter goes into that much detail, with so many warnings and instructions and allowances (that Bear may need to take at any given time in the school day) if there aren’t some serious, scary, dangerous and potentially fatal aspects to this ‘manageable disease’. This disease that has literally fucking destroyed the use of an organ in my small boy’s body.

So forgive me if I don’t want to hear that we will manage it. I know we will, we have to. And I know that friends and family who say it are saying the right thing. Really the only thing that they can say to us at this time. Forgive me if I don’t accept hearing it from the nurses and doctors over and over again. From them I want everything. The good, the bad and the ugly. I have to know everything because I have to be prepared and I have to know what to watch for. I refuse to walk around with rose coloured glasses saying “it’s ok > it’s manageable”. I need my eyes sharp and at the ready, because that is really the only way I can guarantee that it will stay ‘manageable’. That is the only thing I can really offer him that feels like it’s from me during this time when our lives have been taken over with ‘equipment’ and medicine to keep my child alive.

Knowledge is power and that is how I will make sure I am always going to be one step ahead of this disease at all times. I will protect this boy, my boy, fiercely. Even – and especially – at the risk of finding out that the ugly, is really fucking ugly…and scary…and perhaps even – not so manageable.

In the meantime I will manage some sleep, or I hope to. And I will manage going in for day 2 of Diabetes Daycare (which, incidentally, is nothing like a daycare – it’s just a shitty little room). And I will manage my overwhelming emotions of fear and confusion, desperation and despair. Because what I do KNOW is that it isn’t “manageable” – what it IS is that it must be managed. For him to survive, for him to have a chance. 

And yes, I know that we will manage it. Because we must.
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Heading home after a long day.

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Filed under Asperger's, death, diabetes, strength, Transition

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