Sunday, August 28, 2011

When fatigue sets in...

What do you do when you are soooooooo tired?

Many parents of kids with T1D do regular overnight BGL testing, myself included. We get used to the lack of sleep and disrupted sleep patterns are just a fact of life. Most of the parents I know in the T1D community have permanent bags under their eyes, myself included.

But every now and then it takes it's toll and you find that you are completely exhausted.

Like just about every parent on the planet well all put our kids first, but most parents don't get up in the middle of the night to check on their kids.

It's a well known fact that disrupted sleep and not enough sleep can increase the risk of serious health problems such as cancer and heart disease. It can also lead to obesity and Type 2 diabetes.

According to Eve Van Couter of the University of Chicago, "Lack of sleep disrupts every physiologic function of the body. We have nothing in our biology that allows us to adapt to this behaviour." ("Scientists Finding Out What Losing Sleep Does to a Body" - Rob Stein, Washington Post, Sunday 9 October 2005).

This is a serious concern for parents of T1D kids - how can we look after our kids if we are putting our own health at risk?

For 2 parent families it is very important for BOTH parents to share the load when it comes to the care of your child with T1D. Perhaps work out a roster for doing nocturnal BGL tests. I know of some families that do week on/week off so that each parent is able to catch up on sleep regularly. This has the added benefit of ensuring that both parents have an equal understanding of the complexity of this disease, particularly when BGL's play up overnight and in the early hours of the morning.

But what if, like me, you're a single parent?

Many of us don't have a big family support network, many don't have family around at all and, for those that do, we often find that trying to get extended family members to understand what is involved in the care of our kids is an uphill battle.

I guess the lesson from this is that we all need to make sure that we have some kind of support network, whether it's a partner, a close family member or a trusted family friend. We all need to realise that we can't do it all ourselves and that it's okay to ask for help.

Now, if I could just listen to my own advice....

Friday, August 26, 2011

Wish On A Star For A Cure - Friday 2 September 2011

I received an "invitation" to this event today via Facebook and decided to share it here. Please read below for the details and click on the Post Title (above) or the image to join in on this event - and invite your friends and family.

This Facebook Event was created by T1D Mum Cathy Knight McConkey took this idea from a fellow Diabetics Mum who's diabetic child was going to go out and wish on a star for a cure one night, but was too sick to go. So we (a collection of D mums or mum's of diabetic kids) decided to create an event of wishing on a star. The more people wishing on a star for a cure, the better our chances are of getting a wish to come true.

Invite your friends and tell them to invite their friends

So get out there anytime after dark and wish on the first star you see. Don't forget to check in on this event page and please upload pictures so we can see how many wishes were made.

Thursday, August 25, 2011

It's not only children who grow. Parents do too. As much as we watch to see what our children do with their lives, they are watching us to see what we do with ours. I can't tell my children to reach for the sun. All I can do is reach for it, myself. ~ Joyce Maynard

I came across this quote today and it got me thinking.

Before my kids were diagnosed with T1D I had hopes and dreams for them, just as every parent does. I did my best to provide them with opportunities to experience different things, as a family we travelled quite a bit and always told my kids that they could achieve anything and to set their goals high but be prepared to work for it - since nothing worthwhile in life is handed to you on a silver platter.

When your child is diagnosed with a chronic, life-threatening medical condition one of the first questions a parent will ask, after the obvious "will she/he be okay?", is "how will this affect her/his life?"

As parents of kids with T1D we worry about the things that our kids may not be able to do but always do our best to let our kids know that there are very few things in this world now that they can't do. Okay, so scuba diving is pretty much a "no-go" for people with T1D - as is flying a commercial airline - but every day people with T1D are pushing the boundaries and I believe that our kids are lucky to be living with this disease at a time when they can essentially live a "normal" life, provided they take care of themselves.

But that's not the point of this post.

Many of us parents, once our kids have been diagnosed, forget the hopes and dreams we have for ourselves. Our lives become completely focussed on our kids and just getting through each day, often too tired to think of anything but the absolute necessities of life: dealing with T1D, caring for our other family members, going to work, looking after the family home. A lot of the time we even put the pets before ourselves!

The problem is - what kind of an example are we setting for our kids?

If we're telling them to reach for the sun, and we're so heavily weighed down here on the ground ourselves then what kind of message is that?

There are many parents of T1D kids, and other kids with chronic or terminal illnesses, that become advocates for their child and other kids in the same boat, this is a wonderful thing and something that I encourage as much as possible (obviously). At the same time there are many parents who struggle to manage caring for their child (or children) with a medical condition while trying to work full-time or part-time to provide for their families.

I guess my point is that, in whatever way we can, we as parents should always try to better ourselves, to continue to reach for the sun, the stars the moon and show our kids that life does not stop when the road gets a little bumpy.

All of us as parents should use the tools we have been given and do whatever we can to be the best person we can be.

So, you're a parent of a kid with T1D, your a Mum or a Dad, but you are so much MORE than that. 

What do YOU want out of life?

And what is stopping you from achieving your dreams?

Tuesday, August 23, 2011

DRI Foundation Chairman: Harold Doran

DRI Foundation Chairman: Harold Doran

This link will take you to a video of Harold Doran talking about his son's diagnosis and how it changed the lives of his entire family - a story we can all relate to.

Today I have released another new video.

This one is a celebration of our amazing kids!

Saturday, August 13, 2011

It's all about Awareness!

Over the last week I have been working on two new projects. The first is not really new - but now is the time to ramp it up - we are now petitioning the Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs for access to the Health Care Card for ALL Australian's with Type 1 Diabetes for LIFE. The Petition for this issue has received almost 600 signatures in less than one week. There is a link for this petition on the right hand side of this page - as well as right here in this post:

The other project this week is to create a series of Awareness posters to be placed in doctors' offices, hospitals, schools, preschools etc. Below is the first of these posters. If you would like a copy (or copies) of this poster you can email me and I will organise whatever you need.

Friday, August 5, 2011

Crazy busy but AMAZING week!

This week has been so crazy that I just don't know where to start!

Early in the week I attended a JDRF Research Luncheon - the guest speaker was the CEO of JDRF International, Jeffrey Brewer. There were only about 30 of us there and it was a great opportunity to learn about what is happening in the JDRF at the moment, what they are focussing on and where they see the JDRF heading in the next few years.

I met a lot of amazing people at the conclusion of that meeting - including Sean Busby and Mollie Shambeau who founded and run Riding On Insulin! Sean and Mollie travel the world running ski and snowboarding camps for kids with T1D! Right up our alley!

When I arrived home from that meeting I had a bunch of emails and messages waiting for me - what was going on??? I'm usually not that much in demand!

Then I found out the reason for all the attention...

We WON the fight to have the Carer Allowance (Child) Legislation changed!

Full details of the campaign and the changes made can be seen on the Carer Allowance (Child) Review - Victory! page on this Blog.

The next evening I attended a "brainstorming" session with the marketing department of a large pharmaceutical company who is developing a School Information Pack for parents of newly diagnosed kids. This meeting involved parents, teachers and a representative from the Australian Diabetes Council - and I'm confident that in the not too distant future this School Information Pack will be included with the information provided to parents of newly diagnosed children so that they can be better prepared and less confused about preparing their child for their return to school after diagnosis. I will keep you posted about this.

The following day I had another meeting with the developers of a non-invasive nocturnal hypoglycaemia monitor that the 2 kids and I have been trialling for the last few weeks. Some very important changes are being made to that device which should be available by the end of the year. Again - I will keep you posted about this!

A VERY productive week!

Oh - and I also delivered to the JDRF the money raised by the kids' school for their Jelly Baby fundraiser - they raised more than $1,200.00!!!

An amazing effort - and an amazing week!