Life is full of highs that raise you in joyful exultation and lows that oppress you like a dark winter’s morning. And then, then there are the days when everything comes crashing down around your ears in the space of a few, brief words: “I have some bad news…”
That was my world today.
I was with my daughter at her quarterly endocrinologist check-up for her Addison’s disease (primary adrenal failure) and thyroid condition. The endo asked me how my daughter had been.
Well, generally. She’s been well.
Ok, her vitilego is spreading rapidly, leaching her skin of pigment in its pitiless, erratic march across her body.
Also, after several months of gradual and sustained weight loss, she’s started putting it on again.
And her resting heart rate has jumped from low 70s to high 80s in the past month.
One of her behaviour patterns has become more rigid and, at times, her anxiety seems more prevalent.
But really, overall, her health has been okay.
The endocrinologist looked at me with compassion. “I have some bad news,” she said. “Your daughter has Type 1 diabetes.”
Type 1 diabetes. My heart plummeted.
I thought I’d hear this news one day, preferably many years down the track. In the best world, never. However, given that my daughter already had three autoimmune conditions (and my family history), she was odds on to develop it.
Anyone familiar with Type 1 diabetes will know what that diagnosis entails. Not just the daily routine of blood sugar monitoring and multiple injections, but the careful balance of food intake and exercise, the worry of hypos, fatigue and potential for complications with eyesight, foot and leg health, the effect of anxiety, hormonal change and overall health on the blood sugar balance you need to maintain for life and health.
It will take a village – the family
I grew up in a household where my father, sister, and youngest brother had Type 1 diabetes. My niece has had diabetes since she was six. Until he died at 45 from cancer, Dad lived a rich and fulfilling life. He and Mum bequeathed a family cultural legacy of self-discipline and moderate behaviours to my siblings and thence to my niece. That has made all the difference to their long-term health. But their journeys have not been – are not – easy.
I have a reasonable idea of what I’ll have to help my daughter manage.
However, it will be particularly difficult for her (and us), given her minor intellectual disability, significant sensory issues and autism.
She understood on one level what the doctor was saying. “I’m scared,” she told us plaintively. “I want it to go away. I don’t want the pricks.”
She understands about finger pricks and injections. Quarterly blood tests as part of monitoring her Addisons have been difficult enough. Now, she’s facing multiple daily pricks for her injections and blood sugar testing.
“When will it go away? I want it to go away,” she pleaded. “Never” is hard for her to grasp. When so many things in life have beginnings and ends, the concept of something unending is difficult to convey.
It will take a village – the providers
This diagnosis has broad implications for the providers who run the services that my daughter accesses. They’ll really need to get on board with her diet in a big way.
My heart sinks when I think of the food choices at her social activities. I’m not quite sure yet how it will be handled. When I’ve raised this issue previously, the ability to access healthier food choices seemed limited. It will be a tricky issue to negotiate. I don’t want her to miss out on valuable opportunities to socialise because the only food on offer is fast food.
Yet food is probably the least of my worries. How will she manage the logistics, so to speak, of diabetes management during the day when she’s not home?
I can’t see my daughter managing her own finger pricks in the short term, if ever. She’s not dextrous enough. As for recording the results, that will be impossible. Writing is painstaking and laborious for her, and her letters are large, too large for the small boxes of the record books.
In the short term, those jobs will probably – and rightly – fall to me. But in the longer term? Will this alter the sort of programs she can access, if she’s dependent on others to administer and record her finger pricks and injections?
Writing down your own test results is fiddly and time consuming, even if you have excellent fine motor skills. If you don’t, there’s an app for that…perhaps…
And then there’s the future beyond the “long term”. To a large extent, my daughter will always depend on others for her care. Despite my best efforts to remain positive, I’ve always harboured strong concerns about her future when I can no longer care for her. The stories that are emerging around the Royal Commission into Aged Care leave me cold.
It’s sadly inevitable that the recently announced Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability will reveal just as many harrowing stories of abuse and neglect. After today, my concerns have increased exponentially.
A not-so-shiny new tomorrow
“I have some bad news.” Those words were the beginning of a new tomorrow. The old world with its certainties and familiar adversities is gone. The new world has begun and I have no idea how I’ll step into it. At the moment, I have only questions and no answers. Worries without solutions. Heartache for my poor girl, for her fears about this new health issue that she must contend with.
And then, as if that wasn’t enough, the endo gently informed me that my daughter might also be at risk of early menopause with all the complications this can entail.
Oh great.
“I’m sorry,” the doctor said. “When I looked at the results, I just thought – oh no. That poor girl. You wouldn’t wish it on anyone, but with what your daughter already has to manage… I’m really sorry.”
Me too. All of us. But it is what it is. And that’s life, isn’t it? You just have to get on with it.
There are still many things to give thanks for. I’m glad that this was discovered early. I’m relieved that I already have some knowledge and experience of Type 1 diabetes. And diabetes isn’t the great phantom unknown it was when my father, and even my siblings, developed it. I’m grateful that my sister and one of my brothers just happened to be at my house today when I returned from the doctor. I’m extremely thankful that the diagnosis wasn’t for something worse.
But this doesn’t change the fact that sometimes life is downright difficult, and you have to hold your head high, breathe deeply, and take the next step.
Until next time, keep on wombatting.
