Newsflash: Girl who falls face first stands up

I haven’t written a blog post in 4 months. This feels like the confession of a girl who’s not Catholic. I REALLY feel like writing today though. I’ve got the mojo, but I don’t think Falling Face First is my home anymore. Let me explain.

I feel today like writing my usual type of post. My usual ‘my husband talks in his sleep about putting barcodes on the dog’ -kind-of-post. A men baffling me kind-of-post. About them having bucks’ parties that last longer than most weekends. About them going emotionally AWOL with work then LITERALLY bringing home the bacon. About not being sure if I want any answers, or if I like them better shrouded in mystery and a misting of beer. Because I like bacon, and bacon is better than answers. But instead, I’m not writing that post.

I’m wrapping up this blog, and moving to new premises. Here’s why.

Sometimes laughing at yourself and at things isn’t coping, but hiding. I’ve been doing a lot of it over the last couple of years. When I get hemiplegic migraines that make me lose half my body for a day or two at a time, I laugh at myself afterwards. I crack jokes about Weekend at Bernie’s while my kids put stickers over my frozen face. It doesn’t upset me anymore because it just is, but it’s a huge mess in our lives. I’m trying to fix the mess, slow down, and take as many stressors out of my life as possible. I needed rest, food, a different job, to gain weight, and to be present with my family without taking photos and jotting notes. So no posts for the last 4 months.

Tinygrass is dreaming

I got a better job, 4 days, closer to home. I’ve rested. I’ve laughed with my girls and watched Frozen 50 ten million times (not a typo. It’s a real number). I’ve napped on Saturday afternoon. I’ve read blogs and commented on Facebook cos commenting the other way is too hard right now. Had no hangovers instead of 5. Gone to bed at 9pm on many of those Saturday nights. Didn’t manage to gain any weight. Drank an amazing martini last night. I’m feeling happy and relaxed.

My just 7-year-old Little L, with Type 1 Diabetes, is sunshine. The diabetes is not. I make light of the coping, because we just do, partly because I haven’t had a spare moment to take a look at my unacknowledged grief. Somewhere under here I am very sad about the loss of her carefree childhood. The worry, stress, and the fact she will NEVER eat a mouthful without checking and considering her blood sugar and insulin balance and entering the carbohydrate content into her pump. Sometimes there are tears that catch me completely by surprise – I am so caught up in managing the day-to-day of her condition.

Pocket-sized package of wiseness.

Pocket-sized package of wise old woman. 

Instead of cracking jokes to cope, I’m dealing with the shit. I think it’s called being a grown up. It’s pretty boring and bullshit on the social front, but on the personal front, connecting with my kids, getting to know my husband between our Outlook appointments, and reading good books and having beautiful dreams, it really rocks. I didn’t really want to grow up, but now I think I am, I can’t be Falling Face First anymore.

I also have a pretty big project in the works. 

This is our logo. Do you like it?

This is not the last post. There are too many awesome people I have to yell my love to before I go. I just don’t know if I can hang out here very much anymore. I’m done falling on my face.

Watch this space for directions to my new place. You didn’t really think I could run away and just not write anything anymore did you? xx

 

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.

20131107-082345.jpg

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 exchange week

Week, I’m going to take you back to the shop in exchange for another one.

In the depths of the night, quietly, stealthily, a small child steals on padded feet into the warmth of a mother’s bed. She snuggles. A second tangle of blonde hair arrives, nestles, and barks like a seal beside the mummy meat in the girl sandwich. There is water, there is panadol, there is a semblance of sleep.

It’s morning. Rays of filtered grey light finger through the slits in the blinds. The thumberlina child dances awake, whirling like a dervish, spinning on the sheets, before beginning to cough, and like the exorcist, a lava of vomit spills forth from her rosebud lips. The dog is awake now.

Dolly was sick, sick, sick, so she lay on the bathroom floor until the nausea passed.

Meanwhile, in a galaxy far, far away, there is a Man. Man drinks a whisky drink, he drinks a vodka drink. He drinks a lager drink, he drinks a cider drink. (Does this sound like a song? It is.) He’s in a blues bar, in Chicago. He is jetlagged, but calm. He phones home (does this sound like a movie? It is). He wonders why things look a bit tense over facetime when he calls from the bar to share the music. It is WONDERFUL music. I’m glad to hear it.  I’m going to be a blues singer when I grow up.

It’s afternoon. Someone should tell the car that smoking is bad for your health. It can cause cancer and birth defects. It also smells terrible. We climb out. The tall one is tired. So, so, tired. And flushed. She drags her body to bed. I worry. She wheezes.

It’s morning. It’s the clutch. It’s $2000. The tall one has high ketones, normal blood sugar, and is really wheezing. I call the hospital, for the paediatric endocrinologist that manages her diabetes. She wants her to drink and eat. The tall one is too tired. I convince her, and the numbers settle slightly.

In Manland, the Chicago Bulls are playing. The Man is watching. The Man has won an International POPAI Award for his designs, and is attending the awards and a trade show. I am very proud. Next week the Man will be mingling with the locals in Shenzhen while he oversees his production run. I hear bird flu has made a comeback in the eastern provinces of China. I hope he does not come home laying eggs.

At the doctor, the tall one is given ventolin to help ease her breathing, and antibiotics for her respiratory tract infection. She hopes we can manage it at home. I do too. Ants fall in my hair. From a tree? They bite me. The tall one swats them off. I lose half the broken key from our borrowed car. The part that starts the car. I scrabble around in the street. I find it. This is my lucky day. (Does this sound like a horse? It is.)

Does this look like a key to you? Yeah, nah. I call B*&shit on your self-description of ‘KEY’.

 

I am thankful this Thursday there is a persimmon growing on my tree. I guess we’re meant to be thankful for stuff on Thursdays because there’s a ‘th’ in both ‘thankful’ and ‘Thursday’. Personally, I find persimmons revolting, but some people like them. And they are an interesting colour. I’m reaching here, ok? And unless someone can watch my sick daughter while I be thankful for scotch, this persimmon will have to do for now.

Here. Have a persimmon. I don’t want it.

xx

Mumbot Version 2.0 – an update

Mumbot’s home!

She’s here! She’s arrived! Well… not the complete Stepford version, since I’m wearing gym pants and a sweat shirt, but I’m feeling, strangely … serene. I wrote previously of my frustrations at home with the girls, and my lack of patience. Lately something’s changed, for the better. I’m really enjoying my girls. They’re not driving me crazy, and when they’re slow or non-responsive, the banshee is not coming out. My care factor is lower. Why????

They are cute and fun. Little A told me on Good Friday that poor Jesus was hung up on the clothesline, but that on Sunday, he’d come back up to life and we might see him walking down the road. Woah. Interesting stuff going on in that Sunday school class she visits sometimes with her grandmother.

Even diabetes played nice over Easter. I’d like to personally plant a big sloppy smushy kiss on the inventors of the insulin pump. Last Easter for Little L was a horrorshow of insulin injections, sugar-free easter eggs, the after-effects of sugar-free easter eggs (have you read about the delightful laxative effect from artificial sweeteners? Don’t leave your kids alone with a container of Eclipse mints, EVER), and some head-spinning rocket-launching tantrums as her blood glucose levels went through the roof despite carefully meted out chocolate hits. This year, however? You want two eggs? Sure. I’ll put the carbs in your insulin pump, then you can eat it. Another four little ones after lunch? No worries. I’ll add up the carbs then it’s all yours. She went high, but we could correct it straight away with another boost of insulin delivered through the pump. I LOVE YOU MR AND MS INSULIN PUMP INVENTOR PEOPLE. And so does the Easter bunny.

The whole long weekend they’ve been gorgeous, and I’ve been trying to pinpoint what’s different. I think they’ve changed because I’ve changed. I’m trying to turn off the trigger mum yell response (which is THERE, believe me) and listen to the need underneath the annoying whinge or refusal. I’m taking two extra minutes to squat down and cuddle and talk quietly, and though it’s taking practice, I’ve found it’s saving me 10 minutes that would have been spent in time outs and escalated crappy behaviour while we head butt like goats.

I am the brown goat. Cos I am bigger, obviously.

It’s far from perfect. It’s taking A LOT of time. I am running late. My parents’ cat, aged 21, died over the Easter weekend and the girls are really sad, and need extra cuddles and talks while they spontaneously pop out with questions about death and wishes that he come back to life (WHILE GETTING READY FOR SCHOOL). Add some rain and the fact that kids turn into frozen confused statues as soon as you add a raincoat (until PUDDLES! Oooh now they’re all Peppa Piggish), and we have a record for school lateness. 10 minutes after the bell! Whoops. But they are happy. And, I didn’t yell.

There’s much refining to be done. It’s not like you can get everyone out of bed 20 minutes earlier in case someone needs some touchy feely time. If you’re anything like me, that’s not enough to stop you from pressing ‘snooze’ on your alarm button. I wonder also whether my new ‘zen’ state has anything to do with the new epilepsy meds I’ve recently started in addition to the ones I’m already taking for migraines. I’m feeling a little whacked, I have to admit. It’s quite dizzy-making at times, and I’m tired, but I’m also feeling really chilled. Hard to work yourself into a frenzy about something when you’re a floating fairy.

As always, I’ve got to find a balance. Tips for being nice, and also being on time please? Punctuality is my nemesis. I suspect you’ll tell me we need to just turn all the clocks in the house back an hour before the real time, but then I’ll have to come around and punch you. Sleep is perhaps more important than food.

See? I’m still me. I still have the energy to punch people when it’s absolutely, completely necessary. Threaten my sleep and I’ll take you DOWN. Nicely, in a quiet voice.

xx

Not Charlie Sheen #winning- but LOOK! A funny goat!

I’m not Charlie Sheen. Not winning today. Tiredy, ranty, tired pants. Just back from the neurologist, loaded with scripts for more drugs. Weeeeeee! Hemiplegic migraines are spaced 3 weeks apart now, which is fairly good going, but we’re hoping to get them to six. My neuro is awesome and I love her a lot. I went down like a sack of potatoes in the school playground last Thursday, which was HIGHLY embarrassing, particularly since I’m now not only the ‘new mum with the diabetic daughter’, but we’re now also the ‘family whose daughter has diabetes, and mum that falls down in the playground after she forgets how to walk’. So much for keeping it out of sight. At least we have the ‘cute little sister’ and ‘husband that rides a motorbike’ going for us. Maybe??

Little L’s diabetes is all over the place. She’s high, she’s low, she’s mostly high, high, high, and emotional and cranky and tired, but trying to hold it together. Like a 17-year old girl, trying to get a grip on her hormonal swings, and be the smiley girl the world wants to see. It’s hard to watch the struggle at 17, and it’s hard for me to watch the struggle at 5. She infuriates me with her irrational rage and tantrums, and I want to squeeze her tight at the same time.

Anyway – I’ve had enough of all this whingey whiney blah-dy blahness. Have you? This is possibly my shortest post in history, but I’m flat out trying to get all this shit together, and get some work (cos that’s gone away now too), and run to appointments, and KITCHEN. FAIRY. WHERE ARE YOU?

So when I saw this I laughed, and laughed, and kept on laughing until I weed a little bit.

I do (secretly) quite like Taylor Swift. But I like the goat even more.

xx

It’s a diaversary! Happy one year, diabetes baby.

Happy diabetes to you! It’s your diaversary! Here, have some cake! Umm….

Yesterday marked one whole year since Little L’s diagnosis with type 1 diabetes. While not exactly cause for celebration, it is a milestone, and in much the same way as a birthday it’s given me pause to reflect and think back on how far we’ve come. We’ve made a year. We feel in control. Most of the time.

Sushi, bai bai

The coincidence of this milestone occurring at the same time as Little L starting school tomorrow has made this quite a reflective week. I’ve been neglecting the bloggy world to soak up some time with my munchkin before she runs away to share her gappy-toothed grin with the big bad world.

Last week was also quite extremely sucky, and this whole starting school business, though we are both very excited about it, has been more nerve-jangling than I’d been hoping for. It’s going to involve a lot of my presence over the next couple of weeks while I support the teachers through finger-pricks and insulin pump button-pushing, and work to allay their understandable anxieties about looking after my special little girl. I dealt with some surprising crap that I don’t want to go into because I’m trying to be positive this week, and I’ve already chucked a different ranty post in my drafts folder, about dentists and abscessing 5-year old teeth, never to be retrieved.

All this reflective time has me focusing on the parent I am, the parent I’d like to be, and the parent I NEED to be.

Diabetes is making me be a teacher and a tiger mother, a fighter and a crusader, and none of those things come naturally to me. So often out of the house these days I’m totally out of my comfort zone, finding myself justifying, explaining, and arguing, when really I’d prefer to listen and agree. Training the school staff, when I’m terrified of public speaking.

There are two recent people problems that have driven me quite mental and have been hard to avoid. The first is the tendency that many have to compare diabetes to something else. The second is dismissing its seriousness. They say things like, ‘At least you can manage this once you’ve got it sorted. If it was asthma you’d never know when it was going to strike in the middle of the night and you’d find yourself off to hospital.’ It’s nothing like anaphylaxis, and it’s nothing like cancer. Do I feel better now or do you? It is what it is. And it IS life-threatening.

Sea food!! One classy chick.

I recently related the sad story of Lewis Marnell, an Australian X-games pro-skateboarder who passed away last month aged 30 from type 1 diabetes. He’d had it since the age of 10, but it still got him. He leaves a wife behind, and it’s so upsetting that young people die from this disease despite all the technology. It is definitely manageable, with extreme vigilance, every minute of your life. Sorry. Ranty pants off. I’m just tired of people dismissing it, and think if they understood it better it wouldn’t be the case.

BUT HEY!!!! We’ve come a long way baby. And we’ve got a longer way to go. But now it’s a diaversary!!! So let’s have some icecream and pump it up!!!

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

 

Dentists are not a Type 1 girl’s best friend.

‘This man is a dentist – that’s why we can only show you his terrifying mask on television’

 

Wednesday, you can get wucked. Prepare for a ranty, cranky post. I have nobody to be mad at except nobody’s friend, diabetes.

Apparently, when you have type 1 diabetes, (or any type, AKA, ‘normal’ type 2 diabetes) you have a much higher risk of tooth decay. Not earth shattering information in the big scheme, I know, and probably everyone you and I know has a filling or two, but HOLY HELL. Today was shocking and suckful. Or sucking and shockful.

It turns out Lauren has an extremely large cavity in the back molar that is exposing the nerve, so she has to go back for not only a filling, but  nerve treatment as it’s exposed and will get infected and abscess if it’s left much longer. The dentist told me this very calmly. I don’t think my face was terribly calm, though she kindly used the word ‘pulp’ instead of ‘nerve’. Lauren’s so beyond reacting to anything that has to be done to her I doubt she’d have baulked anyway. There’s a little hole in the other side too, but hey, what’s a little hole when we’re talking about PULP. It’s making me want to protect my teeth’s balls just saying the words NERVE and PULP.

So – the tooth ‘repair’ is what they’re doing to Lauren on Monday. Tomorrow, meanwhile, is just another little 2-hour diabetes clinic visit. She’s just a hamster on an appointment wheel. She’s becoming so docile and compliant with all things medical I almost want her to go nuts and rebel, just so I know she’s still a child instead of a patient.

The technical term for what they’re doing is a pulpotomy - so the pulp root is still ok (small mercies?) and the decay is isolated in the pulp tip, so the dentist will leave the healthy part alone and only remove the affected pulp and surrounding tooth decay.  The resulting gap is then filled. She’s going to get a face-full of needles and become a numb drooler in any case, and while needles may be tolerable in your belly or bum, I know for a fact they hurt like hell in your mouth.

I’m feeling really beaten down about this. Really sad. Really guilty. It’s the crap about ‘putting your baby to bed with a bottle’ that’s stuck in my head, and though I didn’t do that, what we’re doing now IS bad for her teeth, and I can’t help it, and have to keep doing it. She’s hypo or low at least two nights per week, and we have to give her a juice popper in her sleep (she literally sits up, sleep drinks, then lies back down) to get her back to safe blood glucose levels. Lauren has only had diabetes for a total of seven months now, and never drank anything but water as her ‘drink of choice’ before that. Can her teeth really fall apart that badly in only seven months?

She does have to have a lot more sugar now, because she’s low probably five times per week and needs juice to get back in ‘range’ (i.e. above 4 mmol), but I’m now also wondering, if this can happen in seven short months, WHAT ELSE don’t I know about diabetes and its side effects? After some reading tonight I find it’s not all about the juice.

When diabetes is not controlled properly, high glucose levels in saliva can help bacteria and plaque thrive. The average non-diabetic person should have their blood glucose remain stable within a range from 4—6 mmol as a constant. With Lauren’s blood glucose level bouncing from 2.5 mmol to 22 mmol on some days (hell yeah, I’d say we’re uncontrolled), it’s not just the juice we’re putting in to save her that’s eating her teeth, but also her saliva itself that is sweet and helping plaque thrive. Ahhhh.

Now that I understand the reasons, do I feel better? Nope. Not even a little bit. One more piece of crap for my little girl to be watchful for, already from the age of 5. And for me to worry about the next cupcake, about drinking water after to rinse her mouth out because she’s more likely to decay with those sensitive little baby teeth. To try and sleep-rinse her mouth after I’ve sleep-treated her hypo.

What next? Is there something else I need to know about? I wish somebody would hit me with it all at once, so I can digest it, then be better prepared for the parts that I can do something about. I know the medical profession hates Dr Google, but my dentist didn’t know about any of this – the increased risks or the issues with treatment. At least with the internet we can better equip and prepare ourselves to prevent things that can be prevented. I’m all for reputable, well-researched and resourced health-sites providing information for those seeking the specifics. GPs are stretched, and specialists specialise, quickly and expensively in problem-solving. I want more information, and I want it now.

 

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.