The Accidental Advocate

It was three years ago, on November 14th. My life was insane. I was struggling to care for my two-and-a-half year old toddler as well as for my mother who was battling terminal cancer. I was feeling overwhelmed and tired and reached out to my oldest and dearest friend, Sara. She had lost her own mother recently and always seemed to know just what to say to me so I wouldn’t feel so alone.

Life had gotten so busy once we had kids that Sara and I were accustomed to phone calls going unreturned for days. However, whenever we texted each other that something was going on, we usually got back to each other pretty quickly. That day, when she didn’t return several of my texts, at first I felt a bit frustrated. But by nightfall, I started to worry.

Finally, I received a text from her and this is what it read:

“Amy, I can’t talk right now. I’m at Children’s Hospital with Allie Lou.”

“Oh my God,” I thought. Had there been an accident? Did she hit her head? Did she have an allergic reaction to something? I couldn’t imagine what was happening. Then my head went to an unthinkable place…could Allie Lou have Leukemia or some terrible illness?

We waited and waited for news. Finally I got another text from Sara:

“Allie Lou was just diagnosed with Type 1 diabetes.”

Here’s the truth. At the moment she texted me those words, I felt relived. RELIEVED.

I knew enough to know it was not a diagnosis anyone wanted, but in my mind I thought: “Thank God. At least it is something controllable. A zillion people have diabetes and are JUST FINE.” I honestly didn’t realize that I had absolutely NO idea what I was talking about.

I finally got Sara on the phone early the next morning. I could barely make out the words she was saying, but she sounded completely devastated. She was saying something about “Type 1”, and “blood” and “shots” and “insulin” and “risks” and “no cure” between her sobs. So, being the great friend I always knew I could be, these were some of the “kind” words I offered up to her:

“I know it’s hard but at least she has something manageable…It could be so much worse. Thank God she doesn’t have cancer…It doesn’t make sense, you never give your kids sugar or junk food. Allie-Lou isn’t even overweight…There have been so many advances in medicine, I’m sure she’ll lead a perfectly normal life…Once you put her on the pump it will do all the work for you, right?”

Terrific. In one five-minute phone call I managed to transmit nearly every misconception about Type 1 diabetes that exists. Then my sweet, exhausted and overwhelmed friend tearfully thanked me for calling, and we hung up.

While Sara remained in the weeds of learning how to manage Allie Lou’s diabetes, we rarely spoke. On the occasions that we did speak, she sounded just as exhausted and depleted as a mother with a colicky newborn. I figured that there was a steep learning curve involved in managing Allie Lou’s diabetes, but I imagined that pretty soon she would be “out of the woods” and all would be well. Little did I know.

About a year later, my husband and I were up in the Bay Area visiting his parents. I had finally emerged from a long period of grief-induced isolation after losing my mother, and Sara invited us over so the kids could play while she made us all dinner. Throughout the day I noticed how she and her husband were constantly communicating about Allie Lou’s blood sugar. Excitement, a healthy snack, jumping on the trampoline, swimming in the pool…all those simple things affected this little girl’s blood sugar. As Sara dutifully counted the carb content in everything her little girl ate, I watched Allie Lou brave through a number of finger sticks and shots like a total champ. I couldn’t help but think about about the hysterics my own child experiences from a little skinned knee or a paper cut, and I shuddered.

It was that day that Sara brought out this yummy lemonade recipe that she had been making for the kids, and I watched them guzzle it down. Allie Lou didn’t need an insulin shot and the two boys weren’t bouncing off the walls from a “sugar-high.” That was the first time we discussed turning this drink into an actual product, and eight months later we had the Leaf & Love® juice boxes in our hands.

JDRF

Those eight months didn’t just teach me how to launch a business. They revealed the brutal truth to me about life with a child who has Type 1 diabetes. Had Sara and I not gone into business together, to this day I would probably still be thinking that Type 1 diabetes is “easily managed” and all you need is a pump and it’s fine. I look back on what I said to her that day she was at Children’s Hospital and I cringe.

When running a new business, you basically spend the entire day on the phone. We tried to schedule our calls around Sara going to Allie Lou’s school to check her blood sugar. But I cannot count the number of times Sara would jump on an early morning conference call after only having slept for 3-4 hours, if at all. Why? Because children with diabetes can die in their sleep if not monitored. And forget “easily managed.” There were countless times she suddenly had to hang up and rush to her daughter to correct a sudden high or low. A child’s blood sugar can spike and fall all day and night without rhyme or reason, no matter how much a parent calculates and prepares.

Earlier this year I was alone at a Natural Products trade show, introducing Leaf & Love® to throngs of people who wanted to know all about this new product. A woman claiming to be an alternative medicine doctor was very excited about Leaf & Love®, as she was very familiar with the problems our society is facing due to the over consumption of sugar. When I told her that our kids were the inspiration for the product, especially Allie Lou who has Type 1 diabetes, this woman responded: “She has diabetes? Well her mother must have eaten WAY too much sugar when she was pregnant with her.” I felt my face get red and hot and I just wanted to scream. Here was someone, who works in the health and wellness space, BLAMING my friend for her daughter’s Type 1 diabetes?!?

Clearly, like most people, she was confusing Type 1 with Type 2 (and she wasn’t even on the mark about Type 2, assuming it all occurs in the womb.) Type 1, I have come to learn, has nothing to do with what someone eats or any lifestyle factors. But Type 2 is what the media focuses on when they discuss “diabetes” and “obesity.” We’ve even heard people say that our lemonade can help prevent or treat “childhood diabetes.” That is not true. Yes, it is a zero-sugar drink, but it will never keep a child from a Type 1 diagnosis. It is an autoimmune disease. There is nothing Sara could have done to prevent her daughter’s diagnosis and that is the truth.

After speaking to this deluded lady I was beside myself. I called Sara from my cellphone to tell her about my encounter. She sighed and said “Oh, Amy. I read and hear things like that almost every day. It is so frustrating but I guess I am just becoming used to it.” I honestly couldn’t believe that she has to deal with the emotional pain of this illness, but also the hurtful and misinformed statements from people who do not understand Type 1.

From that moment on, I vowed to myself that no matter where I am or who I am with, if I hear someone mischaracterizing Type 1 diabetes, I am going to say something. LOUDLY. I have become an accidental advocate for Type 1. I do not have a child with Type 1, and I knew nothing about it before Allie Lou’s diagnosis. But working so closely with Sara has taught me more about this disease than if we had not started our business together.

I want our company to provide support for families going through this. Offering healthier beverages is just one small way Leaf & Love® can help this community, but they also need a platform for their voices to be heard.  They need a public face for their private battle and it is my mission to help give them one.

Three years ago, on November 14th, World Diabetes Day, sweet Allie Lou Curran was diagnosed with Type 1 diabetes, changing her life forever. Little did I know how much it would change mine, too.

xo, Amy Stewart DiBianca