How You Can Help Toe Drag Hockey Combat Type 1 Diabetes
My Matthew had just turned two years old, he was so little as he stood in his crib… crying profusely… he wore a one piece footsie jammies, soft to the touch, but they’d gone through the wash so many times. Only on his feet because he clamored desperately to his crib rail, instinctively, as he screamed for me to come to his room again. To help him, to save him from the pain he was living through. This was our third night in a row. I was so tired. My frustration and sleeplessness brought thoughts of that 4:30am alarm, followed by my 6:07am train ride to the city. Into his dimly lit bedroom I’d walked for the twentieth, thirtieth… fiftieth time. My baby boy’s little blue gummy bear nightlight on the dresser… he couldn’t tell me, he was too little for words. He tried so hard to get my attention, my little boy only wanted his Daddy to pick him up like all the other times, hold him close, rock him gently, and magically make all bad things disappear.
Not this time, this time was different, he wanted me to know but how could he tell me? I thought he was colicky and I showed my frustration, “Go to sleep, why don’t you go to sleep,” I said. I even raised my voice and I can see his eyes right now when I think about it eight years later. He wanted up and I laid him down. He reached out to me, desperately, he counted on me, he needed me with every little piece of him, he was scared, yet here I am, his rock, his only hope and I wasn’t hearing him because I was thinking of me. I’ll never get over it, not in my lifetime. His diapers were so heavy, I’d just changed another, but it was so heavy already. He was thirsty, he’d finish a bottle without taking it from his lips, and instantly, he would grasp for more to drink. What did I do… I gave him orange juice. Sugar. More sugar. The exact opposite of what he needed. I had no idea that I was poisoning him.
Change a diaper. Give him a bottle. Diaper. Bottle. Crying, whaling. The hardest part that I hate most to admit is that I remember holding him by his shoulders, no patience left, shaking him, “Just go to sleep, why don’t you go to sleep!?” I tear up every time I recall it.
What came next was the only time in my life where googling a set of symptoms returned results that were so incredibly and obviously accurate. “Constant peeing” + “constant thirst” = DIABETES. It may have well been flashing across the screen in all caps.
By the time we brought him to the doctor that next day, his blood sugar was over 600, might have been far higher, as the test only goes to the 600s. For perspective, yours and my sugar is about 80-100. The doctor said he was shocked Matthew didn’t arrive in a coma. A coma that my orange juice nearly induced.
We all know how doctors and hospitals must protect themselves from diagnosing a situation, prematurely. But in this instance, we weren’t there ten minutes before they pricked his little finger, tested his sugar, and all but short of signing on the dotted line, we were informed almost instantly that our Matthew was suffering from Type 1 Diabetes.
Our lives were all permanently changed that day. Nine days later, we were out of the hospital, and found ourselves in a race against time to learn as much as we could about T1D, as quickly as possible. The family diet changed, forever… we had a new doctor, specialists lined up to visit our home, walking us through this technology and that. Sensors, pumps, diets, all new to us and borderline overwhelming. Yet nothing compared to watching your child helplessly fall victim to a disease he’d never asked for nor deserved. Birthday parties have never been the same, holiday feasts lost their luster. Having to sit out of gym class because his sugar was low. Imagine your four year old being bombarded with questions from curious kids about why he’s taking a shot, why he can’t have cake, is he going to die. His feelings of uneasiness and simple desire to just be like the other kids. Tears down his face as I called him away from his friends because it was time again to prick his tiny finger with a needle… the tenth, twentieth time today, oh, and yesterday too… even when he was brave he would grimace, so would you. And the day before that was the same, as well as the day before that. Tomorrow, more of the same, who knows, might be even more needles, don’t really know, today really wasn’t all that bad. With tears in his eyes, rolling slowly down his cheek, looking up at me, fingers held outward for his needle procedure, into my eyes, the soul piercing question, “Daddy, why do I have to have diabetes, I hate diabetes so much.” Fuck! Fuck! Fuck!
Low makes him lethargic and removed, and high causes a feeling like intoxication, back and forth, every day, high sucks. But low can kill. High causes long term damage, blindness, amputations… but again, low can kill. So, what side do you error toward? What’s the right answer, is there one? Hardly matters because this disease has a mind of its own and what you did yesterday has little to do with what will happen today. Yesterday might have been a good day, so you try to recreate it, similar foods, similar insulin to carb ratio, let’s mirror yesterday with precision, but good luck, pal. Your actions may have been on point but your results could be unfathomably haywire! Could be chaos, and although nobody’s fault, that little boy remains the victim. There’s no rhyme nor reason, he could test his sugar to find that he’s perfect. Let’s say he’s 100, a sigh of relief, a short burst of pride, because together, through some deliberate combination of actions, his tummy is full, his head feels right, smiles persist and he can do whatever he wants. But the cold reality is that we’ve only bought ourselves about an hour and a half, ninety minutes from now we could be up, down, who the hell knows. And, so it is that during the night I set my alarm for every 2.5 hours to wake up and test his blood sugar. Technology has advanced so much, I used to have to wake up, walk down the hall, prick his finger and go from there. Nowadays, I can wake up and look at my phone, he has a monitor that simply didn’t exist in 2012, and for that we are grateful.
I’m sure most readers already know the difference between Type 1 and Type 2 Diabetes. Type 2 is earned… typically later in life a bad diet and/ or lack of exercise brings it on. It’s also reversible, by reversing one’s bad habits the effects can dissipate. Type 1 Diabetes is a genetic auto-immune disease and the onset has nothing to do with diet or exercise. You could be the quarterback for the Chicago Bears (Jay Cutler) or the captain of the Philadelphia Flyers (Bobby Clark) and every day you’re still going to have to live with the constant battle. On some days, I might argue that being diagnosed at age two is a blessing because my Matthew didn’t have to reverse all too many habits, T1D is the only way of life he knows. It is manageable, but that is precisely the crux of the disease, it’s a constant battle, not just every single day, but nearly every hour, and especially the littler they are. All hands on deck all the time, every day, planning each meal takes careful consideration. Not just the obvious carb counting and healthy selections, but Matthew has two brothers. Can they have that nutty bar they want, is that fair as they all sit at the same table? They’re little, too and they might want ice cream, is it easier to tell all of them no, or just tell Matthew he can’t have what his brothers are enjoying? In many ways, our entire family has a form of T1D, as we’re all grossly and forever affected.
I hope this tiny little surface scratch was insightful to someone reading, or perhaps reminded just one person that you’re not alone, if so, my time was well spent.
Toe Drag Hockey was founded upon the mission of helping to eradicate Type 1 Diabetes and we do so by supporting an organization which we’ve developed a close relationship with over time- the Chicago Diabetes Project. Dr. Jose Oberholzer came here from Switzerland and when asked “Why Chicago?” His response was “Well, if its good enough for the atom bomb its good enough to cure Diabetes.” His progress is off the charts, world renowned diabetes specialists, scientists, doctors and researchers come here to learn from Dr. Jose, to soak up what he has done, where we are headed collectively, as diabetic families and what we can expect in the near future… short term hopes of our loved ones, our little boys and girls being insulin independent, asymptomatic, I dream of sending Matthew off to college, free of diabetic shackles. Bad things happen to diabetics at college, away from their support, surrounded by other “kids,” kids who don’t have lifetime of experiences to draw from as his brothers do in case it’s necessary to save his life.
There is time and we’re making progress, but some kid somewhere is running out of time right now. We need to act today, please help me pull it together and activate my tribe, our tribe, our hockey community, the very best community on the planet.
There are two things you can do, the first begins May 1st. The second event is August 6th.
This link will lead you to the CDP event, run, walk or ride on your own time, at your own comfort level, perhaps as a family or on your own to support the kids:
And the other piece of what you can do with us is to participate in the 6th annual Hockey/ Golf GongShow! Golf with us, or donate, sponsor a hole , maybe an event, and of course volunteers are severely needed. https://www.golfinvite.net/hockey
Either way, if you would like to help in any way, your efforts, time and contributions will be massively appreciated and will go directly to a cause which is so important and impactful to thousands of kids, adults and family members across our hockey land, throughout the U.S. and Canada!