This past week I celebrated a milestone. I celebrated 16 happy and healthy years with type 1. I gathered a group of roommates, friends, and fellow diabetics for wine and Klondike bars because… how else would you celebrate the absence of beta cells?
Everyone who experiences a day like that, vividly remembers it. It is kind of like a second birthday. Because my life “restarted” the morning of June 23rd 2000. Here is how it happened.
Our journey actually began on June 22nd at the Kindergarten physicals. After somehow collecting urine samples of two nervously rambunctious five year olds, a task within itself, mine returned with testing positive for glucose. Maybe it was a glitch at the lab? Only I got the extra “special” blood draw, not my twin brother. And that seemed to put concerns to rest when it came back normal, a little higher, but normal. Nothing to be too alarmed with yet, I was young and asymptotic, but something to keep an eye on.
But someone knew. My mom. She new. At the site of a blood sugar out of the normal 70-90 range her stomach dropped like a rollercoaster. She knew. She knew all of our lives were about to change but did not want to believe it. My mom was all too familiar with what was happening because her own brother fell victim to this disease as well. But she remained anxious, silent and in denial and experienced the next 24 hours in utter shock.
They sent us home with caricatured band aids for our booster shots and stickers. And an assignment. Tomorrow, June 23 2000, we were to report back first thing in the morning for a fasting blood sugar. Seemed fair enough to me. I got up the next morning and reluctantly skipped my usual bowl of honey nut cheerios. The seriousness in my parent’s voice indicated that I should not yet question why we were skipping our morning routine. I told myself I wasn’t hungry anyways, hoping my bravery may help relieve the worry lines that had formed on their sleepless faces.
We got there and yet another blood draw confirmed a normal fasting blood sugar. Those results lifted even more weight off my parents’ shoulders, but only for a bit. Little did we know we wouldn’t be home for family dinner that night.
After that, we were tasked with our next assignment. We were to go to the local Denny’s and get an all you can eat breakfast. Wow, June 23rd was turning into one of the best days ever. I’m talking eggs, bacon, sausage, toast with jelly, and pancakes with REAL maple syrup. I had no idea that this was the last time I would ever consume the sweetness of real maple syrup. Despite being full, I cooperatively obeyed when my parents told me to finish my plate.
Boy, was I really putting my pancreas to the test today.
I was confused as to why the pediatrician needed us back in the Dalmatian covered room, but again, I knew today was not the day to ask questions. Why did I have to have my blood drawn AGAIN? I was only two needles into my diagnosis and already unhappy with the direction this was going. Little did I know the amount of only blood tests, would reach more than 46,728 by the time I wrote this blog post—and yes, sometimes I still question why I have to do finger pricks to test my blood sugar.
Waiting for those lab results felt like an eternity. That needle in my arm was it. This was going to decide the rest of my life.
With results showing a blood sugar over 300 we were off to the hospital so fast I didn’t even notice the tears in my mom’s eyes and the change in my dad’s voice. Christopher was off to the babysitter, my mom called out of work and we were headed to the diabetes center at Upstate Hospital in Syracuse, NY. Luckily I would not need to be admitted because I was not in ketoacidosis, something that many newly diagnosed patients experience.
Before going in, my mom had to do one of the hardest things a mother could do. She was going to be the one to break the news to her five year old. She was the one who sat me down outside of the doctor’s office, looked me dead in the eyes and told me point blank that I had Type 1 Diabetes, and I would have it for the rest of my life. She slowly and carefully explained the new lifestyle we would have to adapt to. My first response was not tears, not pity, not resistance but,
“Mommy, will I go blind and never be able to see you Christopher and Daddy again?” Will I go blind. That was my first response. I was worried that I would never be able to physically see my family again. (I wish I could say that is no longer a fear of mine, but unfortunately that is an all too common complication.)
That’s the funny thing about five year olds. The only interaction I had with diabetes was with my uncle, I’d only met a few times, and some how I already understood the all too devastating impacts this life-threatening disease can have.
After swallowing the lump in her throat and fighting to hide the tears welling in her eyes, she said, “We are going to do everything in our power to make sure that never happens to you.” My mom has never forgotten our conversation on that bench.
We entered that hospital with the morning sun low in the sky and didn’t leave until after the moon had come out. Most of the day was a blur, parents talking with all different doctors, social worker reading me books about diabetes in school that I could care less about and staff giving me that wide-eyed nervous-smile look, questioning in their hearts why good things have to happen to innocent, happy, and healthy children like myself. They had seen the far too destructive reality of this disease in their career.
Of the many things that stand out that day I distinctly remember an emergency helicopter landing on the roof of the hospital. And while the patient was in critical condition and the circumstances for my own fascination were at this patient’s expense, it was a highlight of that day. It was that distinct memory that really put life into perspective. Yes, the news of diabetes was devastating and our lives were changing, but I would be able to sleep in my bed that night. At home. With my own family.
Then I remember the sprint. I swear I have never run that fast before in my life. Before my nurse practitioner could even finish uttering the word “shot” I was off my mom’s lap, out the door, down the hall, through the nurse’s station and into the playroom. Behind me was my dad, my mom carrying Pink Bunny, (pshh like a stuffed animal was going to console me in this one waiver from my brave façade that day) my life as I knew it was over. And behind them, my nurse practitioner, Kathy Bratt, with an insulin syringe in her hands.
I like to think I put up a good fight and fast run but I was no match. I was quickly held down by my dad, and punctured with the insulin syringe. After all I did just eat the real maple syrup and my body was slowly shutting down because of my broken pancreas. I think I can only sum this experience up with the word traumatic. Traumatic for all involved.
As we were pulling out of the parking lot after that exhausting and surreal day, I asked if I was going to be okay. I was just trying to gently validate and reassure that I didn’t need to be scared, once again trying to maintain the bravery I had for the past 24+ hours. She confidently responded with, “You are going to be fine, we are just going to need to do a few extra things everyday to keep you healthy.” In a very matter of fact manner, I said, “ok Mommy!”. And that’s all she needed to hear. What we all needed to hear. We are going to be fine, we just need to do a few extra things everyday.
This trauma, but also bravery, is something that all people with diabetes and their families face. Everyone’s experience is different, but it is the uniting force for this community. After all, the reason we walk, fundraiser, research and advocate is not for us, the people who have already lived this trauma. But its to prevent other families from experiencing the life changing trauma that we did on June 23 2000.
Eight hours after that breakfast on what I thought would be the best day of my life, I consumed my first dinner as a diabetic which took place with my mom and dad in the hospital cafeteria.
The day after I was diagnosed, I learned to ride a two-wheel bike. Yes, I had just been diagnosed with a life changing chronic illness and I was focused on riding without training wheels.
Two days later I actually did my own finger prick. A big enough milestone to bring a tear to my proud parents’ eyes.
A year after that I started on the insulin pump, the youngest pumper in the diabetes center.
I continued to participate in my dance recitals and soccer games with juice boxes on the sideline and my mom to reconnect me to my pump after my performances.
Three years since my last carefree meal, I experienced the magic of diabetes summer camps.
Every year after 2000, I’ve had close relationships with all the school nurses all the way up through high school.
My first meal as a diabetic in the hospital cafeteria has transformed into “special” lunches at McDonald’s or The Cheesecake Factory with my mom, dad, or best friend after my endocrinology appointments every three months.
Skip ahead to twelve years after that day being held down in the play room, I met with congress to explain why more funding for diabetes research is necessary and to push guidance on what would become the artificial pancreas.
Five years after feeling so alone, I would be at a family gathering in the same company of two of my uncles, also type 1.
Eleven years after learning on what would become out-of-date technology, I started on the revolutionary, continuous blood glucose monitor. (Then proceeded to lose it, find it and lose it again in a never ending cycle)
Thirteen years after stabbing oranges with water-filled insulin syringes I went off to college, found an extremely amazing roommate, friends and established a College Diabetes Network chapter, while discovering my passion for public policy… specifically in the field of health.
Sixteen years after making those phone calls to family members and friends, letting them know their granddaughter, niece and sister, would be living with an auto-immune disease for the rest of her life, I sit, with friends, eating Klondike bars and drinking wine reflecting on this journey.
“Abigail, Everyday we just need to do a few extra things to keep you healthy.”