Thoughts on a year of a child with a chronic illness
I have mixed feelings about today; the anniversary of a marathon, a reunion (and later marriage), a funeral and a diagnosis.
Nine years ago I ran the Edinburgh marathon (in record-breaking fluke Scottish heat), flew home, went out to a miniature school reunion and won myself a husband.
One year ago today, it was the wonderful Dave Cruse’s funeral. The most wonderful man and an inspiration to all fathers. He died decades longer than forecast, but decades too young, and will always be treasured.
One year ago today too, our little girl was diagnosed with type one diabetes. Diabetic ketoacidosis is quite a life-threatening big deal as it turns out, not just a bit of pre-baby-brother-itis as I mis-diagnosed her earlier signs of illness. We couldn’t understand why she deteriorated so fast; couldn’t walk properly, barely ate, struggled to breathe. The body turns to acid and starts to eat itself: https://www.diabetes.co.uk/diabetes-complications/diabetic-ketoacidosis.html
One tiny drop of blood at an out of hours bank holiday surgery and it was all concluded. Being told “Get her to paediatric A&E quickly and don’t dilly dally on the way”, then being swept into an intensive care room with nine staff awaiting your arrival with monitors and gadgets galore, was the single most terrifying hour we’ve had and, hopefully, will ever have. I’m glad I didn’t understand what was going on and no one told me she was on a heart monitor as a cardiac arrest was possible. I’m pretty sure it’s also why the WiFi in A&Es is so bad; no one wants Dr Google adding to such occasions.
I don’t recommend a hospital canteen as an anniversary venue, nor sleeping in a hospital for three nights while 38 weeks pregnant being woken every 20 minutes 24/7 for blood tests. Labour inducing perhaps but thankfully not.
We left the hospital with bags and bags of needles, medical paraphernalia and wide bleary eyes but we had no idea it was the tip of the iceberg of how difficult it would be. It’s a lifetime of rollercoastering blood glucose, alarms, emotions, behaviour and a difficult relationship with food (60% of type one girls develop eating disorders by 25). There’s no cure, no off-switch day or night, no growing out of it, and childcare options are rare.
One’s child attached to a pump, sensors and cannula stickers all the time isn’t the pure innocent image small children are supposed to have. Inserting cannula into your child every three days is painful for them and upsetting for everyone. Stabbing them with medical needles regularly is pretty jarring with the trust you spend the first years building so they understand you’re there to look after them and not hurt them. Every night after her stories I close her door and wonder if we’ll miss the low blood glucose alarms and she’ll be brain damaged and a different child by the morning. She never is, she’s bounding around first thing even if we’ve been up for her through the night to dose insulin bring her down or glucose to bring her up, but it’s a real fear in the background.
Things to be grateful for…
It’s treatable, we have the precious NHS 🙌, the technology will get much better, she won’t remember life without it and we manage it as a family (type one single parenting doesn’t bear thinking about).
Things to be useful to others…
There’s been a 20% increase in paediatric cases for each of the past two years — that’s a very high rise. Children die if it isn’t spotted early enough but it’s flipping difficult to spot and easy to misread.
It has to be on both parental sides and have an environmental trigger too, but there’s so much variance in the demographics and geographics of the families who get it that the environmental factor is a mystery but it’s lurking somewhere. Tips on how to spot it:
- Thirsty : they want to drink more (it was hotter so we didn’t notice)
- Toilet : they want to wee often (she’d just been potty trained so we didn’t know how often she weed while in nappies)
- Tired: I thought she was worried and confused about the imminent new baby so showering her with cuddles was the answer (but not as critical as insulin).
- Thinner : she became really bony within days
- Breath : the dentist dismissed me when I asked why Connie’s breath smelt funny.
If you notice a child with a combination of these symptoms is definitely worth a check; and be extra mindful if any combination of autoimmune conditions (thyroid issues, coeliac or diabetes) are on both parental sides.
It’s been by far the worst year we’ve known (other than Bertie’s arrival and cheery chubby role in our lives) but we’ve all come a very long way. Connie is the bravest, strongest child I’ve met and I’m overwhelmingly proud of her. Most children are brave and adaptable — children with conditions like type one diabetes and worse really are incredible. It’ll always be a nuisance I’d do anything to take away for her but it’s making her even stronger and more determined.
All children and newborns are amazing but difficult and sometimes tiring. Parents with children with chronic illnesses or psychological challenges do have a different time. Hats off to any of you with extra child challenges.
Thank you Cheony and Andy for seeing the difference in how she’d deteriorated and prompt us to take her to be checked, as another day could have been too late. Thank you, family and friends, for your ongoing support and care.
Finally, please think carefully about how to you vote to protect our precious NHS. Families in America have a shocking time.
#typeonediabetes #type1diabetes #justcureit #saveournhs
