I invite you to read about Renata, and then visit her blog The Diabetic Duo. Not only is she an expat living in New Zealand, but she has two teenagers with type 1 diabetes. You can also follow her on Twitter; she’s @DiabeticDuo.
I’d like to introduce you to Renata of The Diabetic Duo.
Tell me something about your children.
Both of my children are really funny. Very witty and make me laugh at times when it’s probably not appropriate to do so.
How old were your children when diagnosed?
Kelsey was four and Marty was nine.
How were your children diagnosed?
I was completely clueless with Kelsey. We were going through a big custody battle over her (I’m her stepmom) and all I knew was that she was sick and she looked worse and worse every time I went to pick her up. I won’t get into the details because it’s a pretty brutal story, but my husband had a voice mail on his office phone when he showed up to work one Monday morning. Let’s just say obtaining custody was pretty straight forward after that stunt. I do remember being an overwhelmed new mom of a child with a disease I knew nothing about. It brought Kelsey and I together pretty quickly; we all were learning to love and take care of each other. It was a lot to take in, but we rallied as we Porters tend to do.
Martin’s hit me just me like a ton of bricks. He was allergic to red dye for the first six years of his life then he moved into epilepsy. I had just pulled Marty out of the neurology department because I knew in my gut something wasn’t right. I never once felt it was epilepsy. We finally figured it was most likely sleep apnea and had surgery scheduled for his tonsils and adenoids to be removed. All the weight lifted, so I thought. We were sitting at the movie theater a couple of days later and Marty had finished his gigantic diet coke, gone to the bathroom and started drinking mine. I remember yelling at him to not be so greedy and him crying because he was thirsty. My heart just sank. All four of us left the theater, sat at a table and tested him with Kelsey’s meter. People swirling around us all happy with their cokes and popcorn and we just had the rug pulled out from under us again. And…that was that, we got up and went straight to the hospital.
How have your children’s life changed since diagnosis?
Kelsey’s been diabetic for 13 years, so I don’t know that she knows any different. To be honest, I don’t know how to answer this question. It just is. Their life, our life, just is. The kids do what they have to do because they love themselves and life. They complain but it doesn’t last long.
I guess one thing I could say is they are more organized than most kids their age and like all D-children have more responsibilities.
How has your family’s life changed since diagnosis?
I think we are a really close family. And I don’t know that diabetes is fully responsible for that, but I do know that it plays a part. I think Marty is still getting over my being a worry wort with him since he is basically a new diabetic. But he understands why I check in often and doesn’t resent it. As far as our overall life, I don’t know that we would be doing anything different. We don’t hold back from anything now because of diabetes, so I don’t imagine that we are missing anything.
How has connecting online helped you cope with diabetes? What online resources do you use?
The online community has been amazing for me. I read about 15-20 blogs a day. I use Twitter when I can, TuDiabetes. I have learned so much and there are so many people there to support me even in times when I feel I don’t need it. I wish New Zealand had a bigger online community because I know there are families that would benefit from it. Kelsey has started to read my blog consistently and now has made some quality D-Facebook friends. I am hoping she will get the bug and jump in. (I am trying not to push!)
How do you manage diabetes?
Both of my kids are on MDI. They love their freedom and are extremely active. They don’t want the hassle of unplugging and re-plugging in. They know they have the option to explore the pump, but for right now they have no interest. They both do a great job with counting carbs when there are labels and they are diligent, I am quite proud of that. It’s when there aren’t labels that I think we all kind of slip up from time to time.
They test often (4-5 times a day). Marty tests more than Kelsey but he has that type of personality and sometimes goes overboard. I am thinking about getting the funding for a CGM. Being able to strap that on once a month would do wonders for us since night time (like most families) are the most nerve wracking.
What would you tell parents of a newly diagnosed child?
Well telling them to not worry is useless isn’t it? I would say have faith.
Have faith that you and your family can manage diabetes. If it’s a family effort and everyone tries their best, that’s all you can ask. I would also tell them to have an open, honest and as much stressless relationship you can have with your D-kid. They pick up on the stress and you don’t want them to hide it if they ate a cupcake at school. You need to know everything that is going on so you make the right decisions. Blood sugars do what they want to do even when you manage the disease tightly. No sense in freaking out, just correct it. Bolus or pop some food into them and move on. The more even keel you are, the better they will be during the teen and grown up years.
Lastly, connect with the DOC. Read blogs and go through their blog rolls until you find ones that align themselves closely to your personality. There is someone out there for you to connect with. All you have to do is look.
What do you know now that you wish you had known at diagnosis?
We were told that Kelsey’s life was over. And I think we believed it for a few months. Thankfully we came to our senses early, but even now I think back at how stupid I was to believe it even for a minute.
I think the other thing I wish I had known early is that there is no one way to treat and manage diabetes. That it’s an ever changing disease and you need to expect the unexpected and it’s okay to follow your gut if you feel like you wish to adjust some things.
Are you involved with any outreach or support groups? Do you do any fundraising?
To be honest, as the years moved on I fell out of outreach in the US. Since moving to New Zealand, I have started again. I am on the Diabetes Youth Auckland committee and the Diabetes Youth New Zealand committee. I feel privileged to be a part of two big organizations and I am truly enjoying myself. It has also forced me to pull my kids into more events and learning activities. Now I wish I had done more in the US if only it were just for them.
An Expat in New Zealand
Were your children diagnosed before or after your move to New Zealand?
Before, we have only been in New Zealand a year.
Were you hesitant to move to another country so far away? Did their diabetes play any role in your decision to move?
Yes, we were hesitant. We found out that the kids would be covered under the medical system. However, I probably should have done more looking into it. Some things are covered and some aren’t. Not that it would have changed our minds, just so we would be financially prepared.
Were you able to find out about medical care before the move or did you go into it blindly?
We were able to call and ask about it before hand. However, I am nervous about what will happen to them if they have serious complications. If something happens before we get residency, we will have to go home. If it’s after residency, the burden of proof that medical treatment will further their life is on us.
How does the medical care compare between the US and NZ?
Our care is wonderful. There are some things that are behind the times but, it’s more from an administrative standpoint. However, there are people who live nowhere near the cities and don’t and aren’t able to receive quality care with regards to their diabetes. It’s a big issue here. But overall I am very pleased with the quality of care my kids are receiving.
How does the insurance differ? Is there private or nationwide insurance there?
You can purchase private insurance if you have no medical issues. The kids don’t qualify, which may or may not create big problems if they have complications when they are older. I would say the good thing about socialized medicine is that the kids don’t have to worry about getting that top notch job to be covered. But how much they will be covered is always going to be an unknown.
Laugh, Love, Listen and BELIEVE that it will be okay. Diabetes sucks, but it’s manageable. You can do it, your kid(s) can do it, your family can do it. Have faith.
Meet other D-Moms and D-Dads each Monday.