I’d like to introduce you to Tiburon of Shark Bait.
Tell me something about your child.
Ethan is an 11 year old, active boy. He loves to play football and baseball, swim, ride his bike, skateboard and play video games. He is a funny and outgoing kid.
How old was your child when diagnosed?
He was 4 years and 9 months old.
How was your child diagnosed?
In hindsight he had probably been exhibiting symptoms for close to 6 months. We wrote them off to him being a strong willed 4-year-old. He was extra thirsty and made multiple trips to the bathroom after we had put him into bed for the night. We used to go under the sink to shut off the main water supply lines so that he couldn’t drink any water. Then one night we found him in the bathtub drinking straight from the tap. He was so thirsty!
When we witnessed the excessive bathroom visits we assumed that he had a bladder infection. I scheduled an appointment at our Pediatrician’s office and we were seen by a resident doctor as our regular doctor was busy. They took a urine sample and put us in a room. It only took about 3 minutes to get the results back and the nurse came in and handed the doctor a piece of paper. He looked at me and said “Oh, he doesn’t have a bladder infection – he has diabetes. And we need to get him admitted to the children’s hospital RIGHT NOW!”
And that was the moment our lives were turned upside down.
How has your child’s life changed since diagnosis?
Aside from the blood sugar checks, boluses and extra doctor’s appointments, it really hasn’t changed. We do not allow Ethan to use his diabetes as a crutch or an excuse. He can do anything he wants. And we will not allow type 1 diabetes to shape or limit him.
How has your family’s life changed since diagnosis?
If anything, it has brought us closer together. We have always eaten healthy, but as a family we now have something to fight for. We are actively involved with the JDRF. We participate as a family in the Walk to Cure Diabetes. And this year will mark my second year in the JDRF Ride to Cure Diabetes. I will be riding 109 miles in Tucson, Arizona in November. (Tiburon talks more about this below!)
How has connecting online helped you cope with diabetes? What online resources do you use?
It has been fun to connect with other type 1 moms via D-Moms. I use my blog as a way to vent when we are having a bad day or to keep family updated in during a hospital stay. I also use my blog to help raise funds for the JDRF.
How do you manage diabetes?
He is on a MiniMed Pump that he has been on since participating in the artificial pancreas study. He checks blood sugar 8-10 times per day. And we use the CGM once or twice a month to make sure the 24 hour sugars aren’t jumping around.
What would you tell parents of a newly diagnosed child?
The first few months are hard. And type 1 sucks. It really does. But don’t spend your whole life dwelling on it. Don’t allow your child to spend their whole life dwelling on it. They are kids, let them be kids. And they are SO MUCH MORE than type 1 diabetes. They have it. There is no cure for it. And there isn’t much they can do but learn to live with it.
Don’t micro manage your child. They will learn to care for themselves by how you care for them. Stress the importance of good care but don’t stress about every single blood sugar number. Learn about the disease. Learn to care for your child. Enroll in studies. And don’t let your child or anyone else in your family sit around crying about it. It won’t fix anything.
What do you know now that you wish you had known at diagnosis?
That it isn’t the end of the world. Even though it is difficult, it is manageable.
Caring for a child with diabetes is a full-time job in itself, how do you find time to fit in work outs to train for a century ride such as this one?
I get up at 4:45 every morning to hit the gym while the kids are still asleep. I am home by 7:00 so I can get them up and off to school. Some days I go back while they are at school – other days I go in the evening after my husband gets home. The hard part is getting the mileage in – and that usually requires several short (15-30 mile) and one long (50-65 mile) rides per week. (Especially as you get closer to the actual ride). Fortunately, I have a very understanding and supportive husband that doesn’t mind me leaving for several hours on a Saturday… Any ride over 100 miles is called a “century” ride. There are also metric centuries which are 100km – or 62 miles. The ride that I did for the JDRF was slightly longer than a century – it ended up being 110 miles from start to finish.
Were you a cyclist before this? If not, what made you choose bike riding?
I wasn’t a bike rider. I purchased my bike last February with the sole intent of training and riding for the JDRF. We had always supported the walks but I wanted to take on the challenge of fundraising the $4200 minimum and doing something extraordinary. I wanted to push myself in my fitness and do something to help the JDRF and my son – and this seemed like the perfect way!
I’m good at awareness raising, but not as good at fundraising. What are your tips for raising the large amount of money required to participate in the JDRF ride?
Don’t stop asking! I posted it all over my blog and Facebook. I sent out letters. I emailed. I called. I pestered. I had plans to do a Zumbathon to help raise some money – but that didn’t end up working out. Instead, I did a charity auction. I had people donate whatever they felt they could, from homemade crafts to art to clothes to electronics to sports memorabilia. Then I listed everything on eBay and 100% of the money raised went directly to my ride. It was a lot of work but it was so worth it. I hope to streamline the process more and more every year.
I’m in awe that you were able to finish the ride. It seems like it took a lot of fortitude. When you could have easily gotten off the bike and called it a day, what kept you going?
My son fights with diabetes every day of his life. The bike ride was so hard. The winds were unbearable. They were excruciating and they wore me out. But I am capable. I went into this ride wanting to finish – nothing more and nothing less. I just wanted to cross the finish line. I wanted to show my friends, family and most importantly – my kids – that I could do this. It was so hard but crossing the finish line made it all worth it. Even if I was the very last person to finish – I finished.
What do you think completing the race taught your child? Yourself?
I HOPE that it taught him to keep going – to keep fighting. I hope that it taught him that if you go after something and you give it your all and you DON’T QUIT you can get there. It taught me that I am stronger than I thought. I wanted to throw in the towel so many times and I pressed on and I am so glad that I did.
What words of advice do you have for other parents who want to take on a fundraising ride like this?
Four words – YOU CAN DO IT! I think that every one with type 1 and their parents should experience a JDRF Ride to Cure. It is AMAZING. When you sign up for a JDRF ride – it is soooo much more than the ride. It is a whole weekend filled with awesome. All you have to do is walk into the first dinner after you arrive and you can feel it. You are in a room with over 100 people that are some of the greatest people you will ever meet. They have worked their tails off just like you – to get to right where you are. Most of them have a type 1 connection – either they have it or their child has it or their sibling has it. They all speak your language. They all understand what you go through on a day-to-day basis. They all know how scary and unpredictable type 1 is. They are all there for one reason – to find a cure. There were some that raised $5000 – some that raised $10,000 – one that raised $32,000 and everyone in between. This is your party. The hard work of raising the money is over – now you get to sit back and enjoy the four day celebration of all your efforts. I spent most of the evening meeting riders from all across the country and sharing our stories and our reasons for being there. And I knew that all the hard work was worth it. I plan to return every year until I can no longer ride a bike. It is one of the most incredible things you could ever participate in.
To read more about her experience raising money and training for and participating in the JDRF Ride to Cure Diabetes, read these posts on Shark Bait:
Also read Tiburon’s D-Mom Blog guest post Highs and Lows.