This is what I think of you

Diabetes. You can go to hell. I don’t write about you much, because I try to put you in the background. I don’t want you to run our lives. I want to just get on with it, and let you be a footnote.

Today I’m upset by you. Fuck you diabetes. I don’t write about you here. I don’t want pity, but I’m angry at you. I’m exhausted by you. I’m tired of waking up to you in the night. Sick to death of forcing my sleepy little girl to drink juice after juice in the dark to get her blood sugar back up to a safe level.

Last night you pushed me too far. You make me argue with my husband. You disturb my other daughter in her sleep. You dropped little L down to 1.9. That’s not OK. It was sheer luck, mother’s instinct, or fate that told me upon going to bed that the usual 3 am check wouldn’t be safe, and that her bedtime level of 5.7 would need a 1:30 am check. THANK GOD I did. 600ml of juice later, and little L saying ‘ENOUGH!’, she was back to 4.2. What happens the time my instinct doesn’t tell me to check her at the ‘right’ time? Two weeks ago she was so low she was shaking and not ‘there’ and I was about to pull out the orange needle in the dark. She was screwed up and tired and headachy with a ‘glucagon hangover’ the whole next day. She slept for hours. LEAVE US ALONE.

I need a break from you. I want a weekend away. I want to go. But I will miss my girl. I want to see her, and be with her, but without this thing in the way. You are in the way. Why can’t YOU go away for the weekend instead?

I know you make her tough, resilient, wise beyond her years, and great with numbers. Whatever. I want her to be a 5 year-old kid, and carefree. Not watchful and wary. Missing out on fun stuff because she has to sit out with a hypo.

Diabetes, go to hell. You are thorn in our lives, and a nightmare in my nights. I’ll probably regret publishing this post, but I feel calmer already. I need to tell everyone what I think of you, because perhaps people don’t realise how much you truly suck.

Diabetes_Insulin_Pump_opt

My heart needs to do squats

Off to the gym for you. Wussbag.

Diaaaabeteeeeees. Not much fun to talk about, not much fun to play.  Can’t really write a song about it (though it HAS been done – thanks Spicks and Specks for throwing that one on telly and giving me a good laugh one night), and definitely can’t run away. Although you can … please feel free to now if you feel so inclined, but I’m not in a position to unfortunately, and I do need to talk.

Being diabetic does not guarantee dress sense.

Most of the time I just get on with the day-to-day type 1 management for my daughter who’s just turned five, and try not to think too hard about her ten years from now (though I suspect she may hate me and be embarrassed by me quite frequently). I try not to think about what she’ll be like as a diabetic adult, mother, wife, career woman, champion hurdler, opera singer (hey – I’m not one to put her in a box). I just try and make each day as easy for her as I can.

I have been thinking ahead this week, though, as the permanence of her disease has really started to settle on Little L’s shoulders, and she’s struggled to deal with her grief in 5-year old terms. She was diagnosed eight months ago, and the novelty of being brave is wearing off. Now she’s tired of it all, and wants to stop and get off the ride. This ride saw her come home from an ordinary day at preschool on Tuesday, and have an ordinary sit on the couch, and a fairly drastic hypo (low) of 1.3 while watching telly. Normal to you and me is no lower than 4. It was only by chance that I checked her because she wanted a snack and had been as high as 22 mmol only two hours previously. Five more minutes and her not noticing the symptoms, and then what? The usual adrenalin kicked in and we fixed her up pronto with juice, and though she’d been pale and shaky and nauseous, she was starving hungry and bouncing around ten minutes later. Time for me to get shaky then. If only this were a rare occurrence I would be stronger, but she scares me like this at least a few times a month.

These physical ‘scarings’ are one thing. I’ve got them licked. I’m pretty good in a crisis. I’m all business and get shit done, and save the shaking for afterwards. The emotional stuff though? It’s REALLY scary. I don’t know how to do ME with this. I think I’m ok, then whammo – I’m freshly sad. How do I do the right thing by little L? How does a 5-year old process the ‘foreverness’ of an illness? She asked me last week how many more sleeps it would be until her diabetes went away. Then she asked this week if, after our ‘Walk to Cure diabetes’ fundraiser walk today, her diabetes would be gone.

I read an article in the paper last Sunday by Chrissie Swan that really resonated with me about boys, and how she’s glad she doesn’t have girls; these on-the ball, analytical, emotional little creatures who are so watchful, and need to be managed ‘just right’ so they grow up into strong, confident women with self-esteem and a good body image. I agree that girls are tricky.They seem to gain mature insights at such an early age, making observations that are wise beyond their years. Little L makes me go ‘WOAH’ at least twice a week when she talks about things like a woman being ‘silly pretty’.

With two of these magnificent, capricious little beings, I’m already worried that I’ll do or say something that will be absorbed into their spongey brains and retained later for reference, damaging them in some as-yet unimagined way. What if they catch me checking out my bum from behind? What if I put on makeup too often? Don’t iron anyone’s clothes? Let them go out without shoes on? Walk around naked after my shower and they’re demanding toast before I can get dressed?

Shoosh. We’re not talking about my unmown lawn.

The diabetes factor has quadrupled this fear. Studies showª rates of depression in teenagers with type 1 diabetes are far higher than in the general youth population, due to the chronicity of the disease, and are particularly elevated in females. Depression in type 1 teenagers also leads to poorer health management and more hospital admissions. Scary stuff. I need to get it right!

I want to be positive, and I will be again. I know it could be worse (but please don’t tell me that), and I know it’s treatable (though the treatment is frigging hard work and imperfect and she is still all over the place, high and low every day), and I know she will live a full and happy life. I know all of that. But just now, I need to grieve a little bit for my healthy little girl who isn’t any more. Especially because she’s still so sensitive and caring towards those around her. This week I went to buy both girls a ‘prize’ at the shops after Little L’s traumatic dental visits for being so brave, then she turned around and wanted to choose me a prize – a bracelet – for taking such good care of her diabetes.

One of the toughest and sweetest little cookies I know

After I’m done wallowing, I will swallow a bowl of concrete, send my heart off to the gym to ‘harden the F&* up’,  then knuckle down and get back to ‘doing’ diabetes. As hard as I can. Because I love my strong amazing clever girl, all the way to the end of the world and back.

If anybody has some helpful insights into 5-year old emotional development, psychology and processing grief, please let me know!

ª  doi: 10.2337/dc06-0087 Diabetes Care June 2006 vol. 29 no. 6 1389

 

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.