Tuesday, May 10, 2011

my first JDRF Jelly Baby Ball

Saturday May 7th, 2011 I attended my first ever JellyBaby ball! It was a lovely evening surrounded by some of my wonderful friends and fellow T1D parents. Every one of us parents of children diagnosed within the last 18 months.

It was a very very emotional night for every single one of us.

Nights out are rare for parents of kids with T1D - and when they do occur, they're very different than for other parents of kids without medical conditions. Sure, every parent that goes out without the kids has to organise babysitters - but how many of them have serious concerns about whether or not their children will be alive when they get home - or whether they will need to rush out of the ballroom to get home to a sick child? Not many.

These days many of us live far away from our extended families and most of us can't rely on grandparents or other family members to look after our kids if we go out - but for those families with T1D kids who are lucky enough to have family around it can be an even more difficult situation - often dealing with the heart-breaking realisation that you have little confidence in your own parent's ability to take care of your child!

For parents of T1D kids preparing for a night out without your T1D child can be so stressful it hardly seems worth the effort!

Sure, every parent wants to make sure that their kids are being looked after by someone competent and responsible, preferably with some First Aid skills - but very few babysitters (including extended family members) are willing to take on the enormous responsibility of caring for a child with a serious medical condition, let alone one that is so unpredictable!

The first time I went out after my daughter's diagnosis I think I lasted 2 hours - and during that time I was constantly texting the babysitter checking on levels, how much food had been eaten, whether boluses had been done. I felt sick the entire time I was out - even though I was only 5 minutes away from home.

Before I even left the house I had the babysitter (a person who had been looking after my kids since my daughter was a baby) come over 3 hours early so that I could run over the "basics" of T1D care with her.

Hmmmm - the "basics" - that's an interesting description:
  • How to do a finger-prick test - what equipment to use, how to use it, what the results mean.
  • How to enter that information into an insulin pump.
  • How to weigh food and work out the carbohydrate content.
  • What is hypoglycaemia?
  • What is hyperglycaemia?
  • How to treat a hypo?
  • How and when to use a Glucagon Emergency Injection Kit (obviously in this case ONLY under direct instruction from Ambulance officers who would by then be en-route to my house!!!)
  • How to treat a hyper?
  • What if the pump is not working properly?
  • What is an acceptable BGL?
  • What if she boluses for her food but then doesn't eat it all?
  • What the heck is a 'bolus'???
  • What does insulin do?
  • Where is the emergency contact list?
All I could think of was that it had taken me MONTHS to learn all of this - how could I possibly leave my children (since by this time BOTH my kids had been diagnosed) with someone who did not even know what Type 1 Diabetes was before she arrived 3 hours earlier?

Thankfully my son had done a lot of the T1D education along with me after his sister's diagnosis - so he had a pretty good idea of what to do and what to look out for. My parting words to the babysitter were, "Well, my son will be able to help you, unless he's the one who is unwell - and then you'll have a problem."

I am absolutely certain that had the babysitter been any other person and had not known me and my kids for 10 years, she would have gone running out the door screaming.

So - that night I made it through 2 hours - just, but I was never so glad to get home!

For the Ball on the weekend I knew I would be out much longer - it was in the city - which meant a much longer drive and I would not be able to get back home quickly. So I had to arrange for my sister to stay with the kids. Fortunately (well, fortunately for me -not for her) my sister was diagnosed with T1D when she was 38 years old following years of medical issues including septicaemia. She's also on an insulin pump - so I knew that I did not have to worry too much - she would make sure they did BGL's, she understood what was good and what was not, what needed to be treated, what needed to be corrected, how to weigh their meals and count carbs, where they should be before bed and how and when to call for help. 

That didn't stop me from being in very close contact via text throughout the entire night.

In fact - every single parent of T1D kids at the Ball had their cell phones within reach (if not actually in their hands) throughout the entire evening. There was a steady stream of text messages from babysitters, grandparents, aunts and uncles - most of which did not contain words - just numbers - lots of numbers...

Despite the stress of leaving the kids in someone else's care all night I had a lovely evening and the Ball was a great success for the JDRF. I think they raised somewhere around $330,000.00 - which will go towards research for a cure for my kids, my friends' kids and everyone else living with this dreaded disease.

All in all - a good night!

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