Jodie joined JDRF at Parliament House in Canberra, to bravely share her family’s story during an update on the Government’s investment in type 1 diabetes research. Her speech, raw with emotion, gave MPs and staffers a first-hand look into what it’s like for families to live with the burden of T1D every day. There was barely a dry eye left in the house afterwards.
Here is Jodie’s story…
Our son Rilan turned eight in February. He was diagnosed on 16 July 2014 when he was five-and-a-half.
It was very overwhelming when Rilan was diagnosed, we only knew of one family whose son had diabetes, but we ourselves didn’t know anything about it or what support was available.
We were put in contact with JDRF, and Mel from the ACT office became a huge support for us. The entire T1D community have become part of our support network. On top of that, we have our families and friends – we are forever thankful to them all.
Not long after Rilan was diagnosed, we heard that we could apply for a Government-funded pump through a JDRF program. My husband Dom and I had looked into a pump however once we found out how much they cost (approx. $9,000) we knew we could never come up this that sort of money, especially since I only work part-time. We also didn’t and still don’t have private health insurance, because again we can’t afford that with one full-time income, one part-time income, three children, rent, bills, car rego, medical supplies and all the other bills we have to pay.
I applied for the grant in 2014, however funding had already been allocated, so we were told our application would be reassessed for the next year.
I remember the day JDRF called me. I was working in the canteen at Rilan’s school and a lady called me to discuss our application.
She told me that JDRF had looked at our application for a pump for Rilan and that it had been approved. I went completely silent on the phone. The lady asked if I was still there, and all I could get out was a small “ah ha”. She asked if I was okay and I burst into tears. I cried on the phone for I don’t know how long before I managed to ask the lady “what exactly does this mean?”. She told me that JDRF would fund a certain amount of the pump and once we decided on what pump we would like, the pump company would fund the remainder amount. Again, I cried into the phone and in between tears I tried to apologise for being so emotional. She said to me, “please don’t be sorry, it’s phone calls I make like these to families like you that make my day”. By then, I was able to speak, but all I could say was “Thank you, with all our heart, thank you so much for making this happen for Rilan.” She said we were so very welcome and I replied, “but thank you doesn’t seem enough”.
To this day, ‘thank you’ still doesn’t seem enough, so to the Government and JDRF, we say thank you again and we will continue to help fund raise and do whatever we can to help you help and support families like ours.
Having the pump has made a huge difference to Rilan’s life – the biggest being that now he only needs one injection every three days as opposed to four or five daily.
This might not seem like a huge difference to people who don’t have diabetes, but when you are dealing with a child who hates having diabetes, who hates being different, and hates having injections, this is a huge deal.
Rilan would, on a regular basis sometimes daily, have a complete meltdown and physically hurt himself or me just to try and avoid having an injection. He would bite, scratch, punch, hit, and kick me. He would hit himself in the face and bang his head on the wall. We would have to hold him down while he yelled “I hate you… I hate diabetes… I wish this never happened to me!”.
And all we could do was try and calm him, and love him, and try and make him understand he had to have this injection, and the next one, and the next one after that, because we didn’t have an option – because the reality is he would die without those injections. How do you explain that to any child?
Since Rilan has been on the pump, his meltdowns have decreased and although at times he says the site changes hurt and he wishes he didn’t have diabetes, we can manage a lot better and he’s not physically lashing out, hurting himself or me anywhere near as often as he used to. He’s more relaxed at site changes, and with some deep breathing leading up to the site change we can usually mange it smoothly.
Another huge thing is that I am able to work longer hours as I’m not having to go into school every day before lunch time to give insulin like I used to have to. The schools are not allowed to administer injections, so the responsibility is the families – that’s so hard every day having to leave your workplace to go to school and give an insulin injection and then go back to work. You’re lucky if you have an understanding workplace. It’s really stressful and families really struggle with this at times.
I personally still find Rilan’s diagnosis hard to accept. I struggle accepting this is his life now; weighing his food, making sure he boluses for food, making adjustments to his pump for exercise, making adjustments for sick days, making sure his levels stay within a good range to prevent long term damage. There’s checking his levels up to 10 times a day and throughout the night at 10pm, 12am and then again at 3am, just to make sure his levels are safe and don’t drop dangerously low, because we fear Dead in Bed Syndrome.
You can’t control diabetes you can only manage as best you can, and just when you think you’ve got it… BAM it slaps you in the face. Diabetes doesn’t stop for anyone!
As a family, we try really hard not to let diabetes consume us, but at times it’s just so hard!
Jodie
