A few of my favourite things.

A few of my favourite things are made from glass and are full of liquid. Here’s a photo.

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You thought I was going to show you my wine collection, didn’t you?
I love Little L’s diabetes equipment. I love her glass vials full of insulin. The magical juice that keeps her alive. I love her pump. Her blood glucose meter. Her pump inserter with its long sharp needle that makes her cry. Her canula that delivers the insulin to her body 24 hours per day. Her jellybeans.

I love these items that are solid and constant. We can wrap them like a bandage around this disease that shifts like sand beneath our feet, ever changing and keeping us wired and alert. We live in type 1 diabetes-land, where blood glucose numbers, emotions, insulin-dose requirements and health all change daily, or even hourly, or be interspersed by months of relative stability. Amidst the uncertainty, these items of ‘kit’ are my rock. They don’t change. When we have no idea what’s going on and she’s inexplicably climbing higher and higher, we replace everything, with fresh insulin, new canula, fresh line, different insertion site, check her blood sugar levels, and gain a tide-mark to measure how high the flood has risen. My favourite things bring us back our control.

Optimized-fingerprick

In the night, her equipment is my sleep salve. The ever-present threat of not waking up, for every person with type 1 diabetes, is the alarm that propels me out of bed at 3am to check her borderline low numbers. She’s not unique. She doesn’t have a ‘bad’ type of diabetes. Every person with the condition lives with this threat, and those you know with diabetes that don’t appear to treat themselves, or carb count, or inject or bolus, are either very discreet or not taking care of themselves.  I put on my miner’s head torth, and there is her fingerpricker and that drop of blood, delivering me real numbers in the dark, and with reassurance, I sleep soundly.

Being a small girl living with type 1 diabetes is an emotional ride. After the novelty of being ‘special’ at diagnosis 18 months ago has worn off, it’s just a hassle she can do without. Having very high or low blood sugar levels can make a person emotional. Being a 6-year old girl with feelings she can’t quite articulate, of frustration, confusion, difference, and being ‘over-it’ can make a kid Carrie-style emotional. She maybe can’t put it into words, but she does know how to release the pressure cooker vent through anger, just as we do when we’re tired and stressed after we’ve hit our limit. After a trying day looking after the kids at home, or a day at work being needed by too many different factions, we come home and snap at our loved ones. For a 6-year old? This will look like an impressive tantrum, while in fact there’s a sea of confusion and upset seething beneath the surface.

pump entry

When we’re at sea and I don’t know whether to punish the behaviour, or she’s reacting to a blood sugar level, or upset and expressing it through anger, we swim for the rocks. The equipment is our rock, and our stability. We check her blood sugar number, she calms, and we climb out of the sea to dry off.

Little L’s equipment, our rock, makes her feel safe. It keeps her alive. She can’t survive without insulin. And for this, though I hate it with all my heart, I love her equipment. These bits of kit are my favourite things.

Now. Would you like to see my wine collection? It’s quite extensive. Yoga can only go so far.

xx

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The unwanted ‘third child’ – Type 1 diabetes

Earlier this year another child turned up on our doorstep. This ‘third child’, Type 1 diabetes, was not planned or wanted, and she’s a little brat. She’s attached herself to Little L and won’t let her go for the rest of her life, just like family. And, just like family, you don’t get to choose it.

The arrival of diabetes in our lives is much like a new child in the way it’s impacted our family. We as parents have spent time in hospital with our new arrival, countless hours in doctor’s visits, and walked around weary-eyed from broken sleep. Our kids have had a huge adjustment too. Little L, of course, has this Siamese twin of hers to live with forever now, or until such time as a cure is found. She’s endured the sickness at diagnosis, the fear of the unknown with hospital admission, a new world of six-times daily finger pricks and four daily insulin injections into the fat on her stomach or bottom. She also had to get used to the feeling of ‘hypos’ where her blood sugar drops too low, and she needs a quick hit of sugar to get back to normal (in the form of juice or jellybeans). I had to get used to the idea that my little girl could fall unconscious any time we let our guard down for a few hours and stopped being mindful of her food, her insulin, the level of her activity, and the unpredictable effect from the interplay between these three.

Most of all, I had to get used to something that really sux, a lot. For her, and for me.

It’s like a new child in the house for my youngest, Little A, as well. She’s felt left out with all the time we’ve spent focusing and learning about Little L’s needs, and it’s even been a bit like breastfeeding a newborn with a toddler, as she tries to climb all over me while I’m giving insulin injections. Thankfully needles are quicker than feeds, but getting bumped poses more risk than a boob squirt across the room. Little A even wanted diabetes for a while too, so she could be like her big sister. She started wearing a replica insulin pump in a pump singlet. In my twisted new world I thought this was really cute!

Many helpful people contributed information when they heard about Little L’s diagnosis, like about their friends whose daughter just died from diabetes aged 17, or their uncle who now has no toes at all, or the aunt who was completely blind by the age of 60. These are incredibly sad stories, but unfortunately I just can’t cope with them. I offer my sorrow for their families, while inside I’m blocking my ears and going ‘LA LA LA’! Other people want to tell me that I’ve fed Lauren too many lollies, or are curious because she’s not overweight, or think that if I just try hard enough and manage her diet, giving her carefully chosen low-GI foods that she’ll grow out of it. The media is largely to blame here, as Type 2 diabetes is a HUGE and growing problem in our society, so people have little understanding of the fact that Type 1 is an auto-immune disease that would have happened to Little L regardless of her healthy diet, and that without insulin for life, she will die. Now, when I feel strong, I just try and offer a bit more information to anyone who is interested. Harder to do is to block out those who want to tell me horror stories about early death. As her mum, I’m more aware than anybody!

Diabetes is a huge part of our lives now and some days, when we’ve had to stop all activities because of hypo after hypo and Little L is wrung out and I’m drained from worry, its hard to think about other stuff. But, other days, its just something that we do, like making sandwiches, and there’s not much to say about that. Even though my sandwiches are freaking awesome. At least I get some things right!

On the topic of sandwiches, she’s starting school next year, and I’m quietly terrified. There’s a lot of education to do before she’ll be settled in safely and comfortably. What’s reassuring is that thousands of kids in Australia do this every year though, so I can do it too. I’ll probably be the psycho mother with bits of tree in her hair at school pickup, from being camped out in the bushes all lunchtime making sure Lauren doesn’t have a hypo. Hopefully not though. I like to think the school has security for people like me.

Diabetes, funnily enough, is actually not all bad though. Really.

I’ve made an awesome new friend – my support person through JDRF, and we’ve been invited to attend the Lord Mayor’s Picnic in the Botanic Gardens this New Years’ Eve, with a prime vantage point for the fireworks. Check back later for some pics! We’re going on a fundraising walk in October this year in Sydney, partly to raise money to find a cure, but largely so Lauren can feel connected to other kids like her, and not feel so ‘special’. Because special is rubbish.

Best of all, I’ve seen what an amazingly strong and resilient little girl Little L is. She even told me the other day that she quite likes having diabetes, because she ‘gets to do brave things’. She didn’t cower and hide when she had to start having needles, and only whimpered through the first few. Now she proudly shows off her gear to anyone who’s interested.

Little L’s broken pancreas may have temporarily let her down, but it’s giving her a mental toughness and maturity that can only help her to achieve big things as a woman. And the bonus for me is I get to be more proud of her than I ever could have been, before. If this ‘third child’ had to turn up, she picked the right girl to come and live with.

Read here if you’d like to learn more about Type 1 diabetes.