Well, we're celebrating again.
Because if we didn’t, it would just be another day with Type 1 Diabetes, right?
If you found yourself reading this blog, it is likely that you read my previous entry from a year ago. If you didn't, you probably should.
One of my favorite little ladies was diagnosed with Type 1 Diabetes two years ago, when she was only 16 months old. I was her nanny at the time and experienced the worst day ever with the Plunkett's, the day Gracie Mae almost died.
But now here we are, two years later, a little more patient, wiser, considerate, humbled... In some ways I like to think I can empathize with the Plunkett's, having been apart of that experience, constantly learning from them, and advocating helpful T1D knowledge and support... BUT EVEN I WILL NEVER TRULY KNOW WHATS ITS LIKE. This disease is SO misunderstood. I will always tell her story if that helps educate someone and possibly even save a life. So, with Jaime and Jordans permission, some food for thought.
Through out this learning process, the Plunkett's picked up a little something known as "Donut Sunday." I'm not sure if Gracie knows what day it actually is, but most weekends her parents plan, calculate, and pre-bolus to make the morning special with a sweet treat. In other words they give her a boatload of insulin and wait for it to kick in. Something not a lot of people have to consider before devouring a sprinkled donut.
“It can really be an isolating disease. People confuse it with Type 2 and sometimes think WE caused it by feeding her garbage. Kids her age are always running around eating whatever they want, snacks here, snacks there. People don’t understand that we have to dose insulin and wait. Telling a 3 year old they have to wait 15 minutes to eat ice cream or a cupcake, while the rest of the kids are already eating is not a lighthearted task."
Even if they followed the same routine and recipe every day, the results WILL STILL VARY. You don't just 'all of a sudden' figure T1D out. Recreating the actions of a pancreas is FOREVER a learning experience. With Type 2 Diabetes, the body either doesn't produce enough insulin, or it resists insulin. Treatments include diet, exercise, medication, and insulin therapy. TYPE 1 DIABETES IS A chronic condition, in which the pancreas produces little or no insulin. GRACIE WILL NEED TO MONITOR HER BLOOD SUGAR AND USE INSULIN FOR THE REST OF HER LIFE.
Now, consider the fact that she is still a toddler. Some days we think her age when diagnosed was a blessing, she wasn't already eating all the sweet foods the world has to offer. But other days A LOT more factors come into play being so young. Some day she will be in charge of her own glucose, but in the mean time she has an AMAZING TRIBE helping her enjoy all the little things.
She may be 3, but Gracie will gladly check your blood sugar. She says " don't worry, it doesn't hurt" when she checks her parents' for fun. When the glucose meter light flashes green; she says "no juice or candy," red on the other hand usually results in a "yay, I need juice!" or candy, depending how low she is. When she is really low, she cries and screams and is inconsolable. Basically saying "my body needs more sugar" in toddler. As she gets older she will be able to address her highs a lows more on how she feels.
"I remember a birthday party we went to. (Parties and gatherings now give me mega anxiety because food will be at arms length…) Jordan didn’t want to let her have a cupcake because her blood glucose was so high for some reason and he knew it would just make it higher. She was crying and screaming and I said "no, she’s getting that damn cupcake." Normally we agree on everything and I take his opinions to heart and vice versa but I just couldn’t let her diabetes take center stage. I felt it was more important to let her be a child and worry about the blood sugar later and stay up all night dosing if we had to, you know..."
Speaking of long nights...
"Jordan and I sleep in separate rooms right now because it’s so important for us to NOT miss an alert. One of us needs to always be awake enough, so we alternate nights to listen and stay attentive. We either give Gracie juice or insulin to keep her blood sugar in a tighter range and keep her as healthy as we can especially when she sleeps." (Lets not even get into Hemoglobin A1C)... "You know how when you wake up and you have this horrible feeling that you slept through your alarm to get up for work? Imagine that feeling but that you’ve slept through a low alert and you’re wondering if your child is still alive. That’s why we sleep in different rooms, he’s my back up and I am his. I’ve literally gone into her room and placed my hands on her chest to feel it rise from her breathing to make sure she’s alive."
Type 1 Diabetes forever changed the lives of the Plunkett family. Not just because of the disease, but also because of her age. Jaime and Jordan choose to be brave everyday, over and over again to manage Gracies T1D without changing her already innocent lifestyle. It's not just sweets and exercise, it's every minute, every day, every carb, and every gram of sugar. We are so unbelievably grateful that Gracie is still with us today, and she is so lucky to have such and AMAZING village that love and support her every step of the way… And that my friends is why we are celebrating today. Happy Diaversary kid.
Also, no one should ever have to worry about access to insulin or have to worry about how much it will cost. It truly is something our T1D warriors CAN NOT LIVE WITHOUT.