Meet The Type 1 Diabetes Community! Wendy Rose Of Candy Hearts

Welcome to an exciting new feature we are adding to our blog! Each week we will interview a member of the diabetes blogging community and offer them a chance to share their experiences with the disease, as well as their views on the search for a cure.

Our very first interview features Wendy Rose of Candy Hearts. Her inspiring blog focuses on the challenges and experiences her family deals with in the face of type 1 diabetes and celiac disease. She raises three young daughters: Tink, Tiara, and Sugar—who was diagnosed with type 1 at 24 months and celiac disease at age 5.

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In your “I Wasn’t Prepared For That” post, about seeing Tiara off to her first day of kindergarten, you discuss the differences between sending Tiara off to kindergarten and sending her older sister, Sugar (who has type 1 diabetes), off to school.  Are there other moments that you have experienced or noticed the differences in raising two children without diabetes and one child with diabetes?

Absolutely!  I have 3 daughters, and my oldest has diabetes.  Being my firstborn, every new phase is a new experience for me.  I have nothing to compare it to until her younger sisters enter the same stage of development.

·    Sugar was diagnosed 3 weeks after her 2nd birthday. We were trying to potty train, and it seemed impossible.  I couldn’t believe how effortless potty training was for my younger girls!

·    When preparing meals, I often find myself counting carbs for the other two.

·    If one of my non-diabetic children seems unusually thirsty, my brain always “goes there”.  I have a hard time assuming they’re just thirsty and usually end up checking a blood sugar.

·    When leaving the house, we must always remember to carry Sugar’s supply bag.  If I’m running an errand with one of the other two, it seems strange not to have Sugar’s bag with us.

What are the greatest challenges you face raising a child with type 1 diabetes?

Well, letting her leave my sight for the first time was pretty hard.  And, when I say “leave my sight”, I mean that I lost sight of her for a few minutes at a playground.  Nowadays, she’s off to her friend’s houses, loving school, and attending her church classes without me.  Even still, I keep my cell phone close, and can’t help but to worry a little.

Diabetes became the center of every major life decision…from where we would buy a home (access to a school nurse) to where my husband would work (benefits).  He took a lesser paying job with access to great health insurance, and our family left our support system behind to move across country for the opportunity.  Finding childcare for a diabetic 2 or 3 year old seemed impossible.  As a result, I’ve left the hospital setting, and now work from home during the evenings.  I feel like I’ve made a complete career make over to accommodate diabetes in our life.

Sending diabetes to school is a challenge in and of itself.  There are teachers to train, and schedules to make, and blood sugars to manage around testing schedules, recess, and PE.  Other kids and their curious questions, extra homework for missed class time, spontaneous parties, and what to do if there’s a lockdown…it takes considerable effort to have a plan for every possible scenario.

What do you wish people knew about type 1 diabetes?

I actually wrote a blog post about this very subject…here’s a snippet…
Sugar has Type 1 Diabetes.  Type 1 Diabetes is an autoimmune disease, which means her own body attacked the insulin producing cells in her pancreas, and no one knows WHY.  It was not caused by poor dietary choices, eating too much sugar, or lack of physical exercise.  We did not “do” anything to cause it, and there is not a significant history of diabetes on either side of Sugar’s family.  It just happened.

When you tell me that ”things could be so much worse” it doesn’t help. Managing this disease takes a considerable amount of time, energy, focus, and financial resources. Comparing levels of hardship demonstrates lack of empathy.  You should know that *I* can think of a zillion things that could be worse, but none of them are of any comfort to me when I’m watching my child struggle, suffer, and succumb to the effects of this chronic, life-threatening disease for which there is no cure.

Just because Sugar “looks ok”, doesn’t mean she is.  When a child with a seizure disorder has a seizure or a child with asthma has an asthma attack, you know they need help, because there is an outward display of symptoms.  When a child with diabetes has a low or high blood sugar, you may not be able to tell just by looking at them.  For this reason, it is necessary to check blood sugars every 2 – 4 hours around the clock, every day. If left untreated, both low and high blood sugars can lead to seizures, coma, and death.

When did you start your blog and why?

Sugar was diagnosed in 2005.  Between 2005 and 2008, I didn’t really talk about it.  Every now and then I’d peruse the internet, but ended up feeling very overwhelmed by the amount of information.  I felt like it would be impossible to learn everything I needed to know in order to keep my child alive.  Even though it had been three years, I still felt shell shocked and broken hearted at times…and then I felt guilty for feeling that way.  It was a vicious cycle of sadness and guilt.

I started Candy Hearts in August 2008 as a way to stay in touch with friends and family far away.  To my surprise, I began connecting with other mothers who are raising children with Type 1 Diabetes.  In 2010, I changed my URL, and made my archives private because of the personal nature of some of my earlier posts.  Blogging has helped me find a place in the Diabetes Online Community.  I don’t want anyone else to ever feel alone in the face of this diagnosis.

The JDCA aims to be an independent analyst of the type I diabetes philanthropic landscape.  We are seeking to form a paradigm-shifting coalition of donors who will work together to facilitate a cure for type 1 diabetes by 2025.  Two of our major tenets are the importance of defining a cure and establishing a cure-by date.

What is your definition of a cure? What restrictions would need to be lifted off a person’s lifestyle for you to consider something to be a “cure”?

This one is hard for me to answer.  No more glucose meters.  No gadgets.  Automated blood sugar regulation without having to think about it.

At the same time, however, I’m saddened by the number of people with type 1 diabetes who still cannot access insulin.  Every day there are children who die because of this disease.  I don’t want them to be forgotten in the hype about a cure.

Based on your interactions with the diabetes community, when do you think this will be achieved?

Honestly?  I don’t know.  The day after Sugar’s diagnosis, the endocrinologist walked in and said this to me:

“Well the bad news is your daughter has type 1 diabetes.”

“The good news is that there will be a cure in her lifetime.”

I’ve been holding out hope for “her lifetime”…and praying a complication doesn’t take her prematurely.

Wendy Rose
www.CandyHeartsBlog.com

- Stoyan

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