Sunday, May 29, 2011

the importance of support

So far most of my posts on this blog have been about things that my kids have done or said - or about some of the tougher aspects of being a parent of kids with type 1 diabetes - at least the emotionally tough bits.

For this one though I've decided to write about the amazing support I have from the Diabetes Online Community (DOC).

One of the most difficult aspects of being a parent of a child with a chronic medical condition is the sense of isolation. With Type 1 Diabetes this isolation is compounded by ignorance based in a complete lack of understanding of the differences between Type 1 and Type 2 Diabetes. Not only do parents feel that none of their friends or family members understand what they are dealing with, they also find that, for the most part, the wider community automatically lumps our kids condition with what they hear about "diabetes" in the media - that it affects overweight or obese people who have not looked after themselves.

Okay - so I am the same as many parents of T1D kids in that before my kids were diagnosed I didn't have much of an idea about Type 1 Diabetes. Some years ago I did watch an adult friend become very ill and suffer dramatic weight loss, he was eventually hospitalised and diagnosed with "Juvenile Diabetes' - but my knowledge was very limited and I had no idea about the difficulty in managing this condition in a child.

So, our job as parents is not only to keep our kids alive but also to be their advocate and defender - and to educate everyone we come into contact with about Type 1 Diabetes.

But now I'm getting off track - since I wanted to talk about the DOC.

When my daughter was diagnosed I found myself essentially left to my own devices. Nobody had any idea what life was like with a child with T1D. Everyone had advice - usually along the lines of, "she'll be better now that she's on insulin", "it's pretty easy to manage - just a couple needles a day", or the one we ALL love, "chin up, at least it's not cancer!"

I eventually gave up trying to talk to friends about what I was dealing with and how hard it was for my daughter because it was easier to just keep it all inside and pretend I was doing fine than to see the look of pity and the "when is she just going to get over this - it's not that big a deal" on their faces whenever I spoke to them.

If there is one thing that is an absolute certainty with this disease it is that unless you live with it you JUST DON'T GET IT!!!

It was then that I decided to turn to the internet, at least to see if I could find some kind of support network of other parents living with T1D. There were lots of options although none of them ONLY for Parents AND only for Australian families.

As the old saying goes - if you want something done - do it yourself. And that's just what I did.

I set up a Facebook based support group called Parents of Aussie Kids with Type 1 Diabetes Support Network. Not a particularly interesting name - but I wanted a name that was so obvious that if people typed it into the Search box on Facebook they'd find exactly what they were looking for.

In the beginning it was a Public support group but as it grew I decided to make it a "Private" group in order to provide a bit more security for the members - and since then the support network has grown and essentially become a second family.

Every member of that group knows exactly what I am going through with my kids, they understand the sleepless nights, they understand the fears, they understand the utter frustration that occurs on a daily basis when things just don't go right - or the thing you did that worked yesterday - or even 2 hours ago, is not working now. They get what it's like to deal with schools and daycare centres and ignorant people.

Finally - I found a group of people that do truly GET IT!

Now - when I'm with my "outside" friends and family I really don't talk about T1D much - if they ask something about it I'll answer them but I don't complain about being tired and I keep my mouth zipped tightly shut when they complain that they "only" got 6 hours sleep the night before because one of the kids was coughing or had a bad dream.

I do not know where I would be without the amazing Diabetes Online Community. Every member of that community has an inspirational story and every family does whatever they can to look out for their child or other family member with T1D.

A lot of bad stuff happens online, particularly on social networking sites such as Facebook - but support groups like the Parents of Aussie Kids with Type 1 Diabetes Support Network - and the one my son started, Teenagers with Type 1 Diabetes, are an example of how these forums SHOULD operate.

Tuesday, May 24, 2011

Remember Me Video

This video was presented to Ms Jenny Macklin, MP, Minister for Families, Housing, Community Services and Indigenous Affairs at the meeting attended by myself, the "2 kids" and a few other families on the morning of 17 May 2011 in Melbourne as part of our campaign to have current Carer Allowance (Child) legislation changed so as to remove the "10 years of age" cut off for carers of children with Type 1 Diabetes.

Wednesday, May 18, 2011

"the only thing I want...."

Earlier this week the 2 kids, 2 pumps and myself had to travel to Melbourne. The 2 dogs had to stay at home.

The purpose of our trip was to meet with a Commonwealth Government Minister as part of a campaign to try to have vital changes made to current legislation regarding the Carer Allowance for children with Type 1 Diabetes. There is currently a review in progress and I will post all about it once the review has been complete - or more likely, before the review is complete - but right at the moment I'm way too tired to even think about it so I'll just write about this part of the story.

The meeting was very emotional and confronting for the 2 kids. Yes, they live with T1D, day in, day out - and they hate it, but that's just the way things are so they get on with it. They know the "bad stuff" about this disease and, yes, it frightens them - but they do their best not to think about it too much.

The 2 kids are Youth Ambassadors for the JDRF, part of their job is to take part in these kinds of meetings to provide a human face to the issues at hand.

However, it's tough for these kids to sit through a meeting like that and hearing their parents talking about the "bad stuff" to other people.

Of course, we sent the kids out of the conference room when we needed to talk to the Minister about the REALLY bad stuff - the kids know about it of course, but they didn't need to hear it the way we needed to tell it.

Once the meeting was over the 2 kids were emotionally drained and feeling very raw and vulnerable.

I decided to take them on a bit of a shopping trip to find them something nice - not bribery, just a "thank you" for coming to the meeting and doing such a great job.

My son was very flat and feeling ill. I was at the point where I just wanted to see a smile on his face. We spotted a huge music store and I knew the sight of a room full of beautiful guitars would cheer him up. And I was right - the guitar he dreams about was there! He never thought he would actually see one in person! A Gibson Les Paul Custom (I think - I have NO idea). The guitar was more than $6,000!!! But it was beautiful.

My son said to me, "I know, I can sell my insulin pump and go back on needles - then I can get the guitar!"

Hmmmm - interesting idea.

Needless to say, we did NOT buy the guitar - nor did we sell his insulin pump!

As for my little girl - well, she wandered around the big Myer department store - what an amazing place! I asked her over and over again if she saw anything she liked. Each time she sighed and said, "no, they don't have what I want."

Whenever she said this I asked, "Well, please tell me what you want - so that maybe I can ask someone if they have it or if there is somewhere we can get it?" She just shrugged her shoulders and kept wandering around aimlessly.

Eventually, after we had been through this about half a dozen times she came up to me and quietly stuck a folded piece of paper in my pocket.

She had written a note on the paper for me.

The note said:

"I don't want to tell you what I want because I don't want to make you sad or upset. But since you keep asking now I have to tell you so that you will stop asking. The only thing I want is a cure."

"Mummy, please! I don't want to do it anymore!"

Ohhhhhhh - that is one of the hardest things to deal with when you have a child with a serious chronic medical condition.

What do you say? They know there's nothing they can do about it and there's nothing you, as their parent, can do about it! They know that you would do anything to give them a life free of injections, blood tests, doctor's appointments, hospital admissions, counting carbohydrates. They know that there are doctors and scientists trying to find a cure.

So what do you say?

I don't have diabetes, so I don't know what they are feeling.

I know that the injections and site changes and finger pricks hurt, but I don't know how it feels knowing that there will never be an end to it.

I know that it's frustrating to have to weigh their food and know how many carbs are in it, but I don't know how it feels to know that if I don't do these things I could become very sick or die.

I know that hypos make you feel terrible and are very very frightening, but I will never experience the feelings that my kids best describe as "feeling like you're underwater but different" - even if I sink to the bottom of the deepest ocean and have to fight my way up - that's still not the same - and I don't know how it feels to know that this can happen at any time, day or night and for no apparent reason.

I know that blood tests hurt - I hate them myself, but I don't know how it feels to worry that every single blood test may diagnose something else to worry about.

I know that hyperglycaemia makes you feel like absolute crap and that your brain does not function properly when BGL's are outside of normal range, that you feel sick, angry, tired, thirsty - but I don't know how it feels for my little girl to know that when her BGL's are high it is causing irreversible damage to her body that could leave her blind or disabled right around the time that she should be having kids or watching her own little girl start kindergarten.

I know how exhausting it is to have sleep interrupted by nocturnal BGL testing, I'm the one that gets up to do the testing - and I can barely function throughout the day due to lack of sleep and constant worry - but I don't know how it feels to go to bed at night knowing that I may not wake up in the morning.

Today was clinic day for my almost 11 year old daughter. We usually get through it fairly well - but today was different. Today's clinic day involved the first of my daughter's annual blood tests.

My little girl has a severe needle phobia - yes, even for someone who has thousands of needles and finger pricks each year it is possible to have a severe needle phobia.

When she was diagnosed my little girl was severely traumatised when she had to be held down by two huge male ambulance officers - who had to stop the ambulance in the middle of the road in peak hour traffic - so they could insert a cannula and get fluids and insulin into her very sick body. Matters were made worse when insensitive nursing staff at the hospital she was originally admitted to attempted to dig around with the cannula in order to get a better flow of blood for tests - and rather than comforting her, told her to "get used to it" and "toughen up".

The team at the hospital we transferred to the next day are wonderful. When attempts to draw additional blood for extra tests at this hospital proved far too traumatic for not only my little girl, but for every nurse and doctor in the room, they refused to push on and assured us that they would make do with the bloods drawn at the initial hospital. They said that my little girl had been through too much. And they knew that, mentally, I was barely hanging on after having to hold my little girl down while she screamed and cried and was poked and prodded.

So - today, the team at the hospital knew to expect the worst. They were wonderful. It was terrible - it took nearly 2 hours to draw the tiniest amount of blood. Once again I had to hold my little girl down while she screamed and cried in my arms.

What do I tell her when she says she doesn't want to do it anymore? Because I don't want to do it anymore either - but I will, and she will - because WE will not let this bloody disease beat us.

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!

Wednesday, May 4, 2011

introducing the "2 dogs"

Okay, so we know about the two kids, how about the dogs!

I was one of these people who swore that they would never get a dog. My kids nagged and nagged and nagged - especially my daughter. My response was always the same, "when you move out of home you can get yourself a dog, I'm not cleaning up messes from an animal that will never learn to do it themselves!"

Well, they wore me down.

I arranged to buy Heidi, our Spoodle, through a breeder several weeks before my daughter was diagnosed. Kept it a secret from her for ages. She'd been so out of sorts and sick on and off and seemed to just not be coping with things very well. I thought a puppy would be a good distraction for her, someone she could talk to and cuddle and take her mind off things. I had no idea at the time that there cause of her being "out of sorts" was undiagnosed Type 1 Diabetes!

I decided to tell her about the puppy while she was in hospital after she was diagnosed. She'd been through such a rough time, I wanted to give her something positive and happy to think about.

Heidi became part of our family the day after my daughter was discharged from hospital. And we could not live without her!

Even though she has not been trained to recognise fluctuations in BGL's if Heidi is around my daughter when she is low she will not leave her side.

Holly is our No. 2 puppy. She's a "Bordoodle" - a Border Collie/Poodle cross - and she's completely insane. My son desperately wanted a Border Collie but I refused to have a shedding dog. Beautiful dogs, but I could not handle the shedding. So he found a Border Collie Poodle cross breeder! No shedding. Holly's 6.5 months old and is a terror. The interesting, and slightly freaky, thing about Holly is that we'd been in touch with the breeders for several months waiting for word that the mother was pregnant, and following that, that the puppies had been born. We found out about the birth of the puppies on 25 October, 2010 - via an email sent to my phone while my son and I were at the hospital about 30 minutes after my he had been diagnosed with T1D during a series of blood tests to see if he could participate in the INIT II Clinical Trial (since he'd tested positive to high levels of T1D antibodies a few months earlier).

So, life gets a bit crazy in our house!

Oh - and did I mention that we also have 2 guinea pigs???

Tuesday, May 3, 2011

..."well, it seems that your daughter has the diabetes"...

These were the words said to me by the endocrinologist at the hospital the day after my daughter was diagnosed. as he leaned on the wall of the hospital room, head down, arms folded, looking as though the weight of the world was on his shoulders.

Geez - talk about crappy bedside manner!

The way this guy delivered this news to me (which of course I already KNEW since my daughter had by then received numerous insulin injections and had been poked and prodded countless times by every person who walked into the room) seemed like he was delivering a death sentence!

Yes, I knew it was serious, and yes, I knew that it was going to be tough, but seriously, I was half expecting him to tell me that I should get my 9 year old daughter's affairs in order!

Even worse was the fact that there was another little girl in my daughter's hospital room who was diagnosed several hours earlier than my daughter. As soon as this moron had finished with me he went to the other parents, leaned against the wall on their side of the room and, you guessed it, said,..."well, it seems that your daughter has the diabetes"...

and what's with "the diabetes" anyway? That's just weird???

I was beginning to freak out about dealing with this doctor for the foreseeable future with respect to my daughter's ongoing care but, thankfully, about half an hour later a lovely nurse came in to our room and asked if we would like to transfer to a hospital closer to home! Several hours later, after some very stressful blood tests and a terrifying ride across the city in a taxi (arranged and paid for by the hospital) where I was armed with a bag full of hypo treatments and 2 pages of emergency instructions just incase my daughter decided to go into a diabetic coma on the way, we arrived at the other hospital and into the waiting arms of the most wonderful paediatric diabetes team I could have hoped for.

You learn very quickly in this world of T1D that not all doctors or diabetic nurses and educators are the same and that YOU are in charge of the care of your child, not the endo or the nurse or anyone else.

I wonder if Dr HappyPants is still scaring the crap out of parents of newly diagnosed kids on the other side of the city???

Monday, May 2, 2011

The first post

Well, this is scary - what do I write?

Okay - how about a bit of an intro.

You already know that I'm a single mum with two kids with Type 1 Diabetes! So, you know that I'm exhausted, I look 10 years older than I really am, I stress about absolutely everything, and I have the remarkable ability to be able to tell you the carb content of every single food item in the supermarket!

If you're reading this blog you probably have a kid with T1D yourself, so I'll ask this question - how many times have you received strange looks from other people when they overhear you telling your kid that they can't eat something because it has too many carbs! I swear there are people who think that I've got my kids on some weird Atkins diet.

But, as a parent of a T1D kid you'd be used to getting strange looks from lots of people for lots of reasons.

Pretty simple - you don't live it... you don't get it.

Well, dinner was ready about 15 minutes ago - my kids need to be fed!

On the menu tonight:

Roast chicken (Carb content: 0 grams)
Corn on the Cob (small) (Carb content:  12.5 grams)
Carrots (Carb content:  4.1 grams)
Broccoli (Carb content: 0 grams)

Total Carbs:  16.6g

Looks like the kids can have dessert tonight!