Last night at the Ashram I was telling the guests about when Mylo was first diagnosed with Type 1 Diabetes. It was a challenging time. For weeks he had been drinking a lot of water -- like, at least a quart a day which is a lot for a two year old. What's more, he was loosing weight, nauseous, and weak. I suspected it was diabetes, but when you are dealing with a non-verbal, developmentally disabled toddler sometimes it’s hard to know what exactly is going on.
Mylo at the playground, right before he was diagnosed. Winnetka, 2012
One day, Mylo drank and peed so much, he overflowed each fresh diaper and every single pair of pants we owned. His lips were chapped, and he was desperately thirsty for more. We got in the car at 2 AM and headed for the emergency room. I told them I thought he had diabetes. They tested his blood sugar and said "you're right, his blood sugar is over 600mg/dL." We were immediately admitted. We spent the next five days in the hospital, working to stabilize his sugar with insulin and training me how to be his caretaker.
It was like hitting a wall -- I had never considered the sugar in the foods I had been feeding him, and now I would need to count every single gram of carbohydrates for everything he ate, and provide him with a corresponding dose of insulin before he ate one bite of it… FOREVER. To make matters worse, I would have to predict what I thought Mylo would eat, and if he didn't eat something that I served him, I would have to calculate how many remaining carbs I needed to supplement with something else of equal carbohydrate value. All of his insulin was to be administered via subcutaneous injection, and every two hours I would need to prick his finger for a little drop of blood to check his sugar level. Careful log notes would need to be taken of everything, all the time.
For better or for worse, I had inherited the role of being Mylo's pancreas.
Those early days of November 2012 Mylo and I were handed a life sentence; and unlike parents of typical kids who have diabetes, Mylo will likely always need someone else to manage his nursing care. Due to both his behavioral challenges as well as a rare auto-immune condition called "lypoatrophy," Mylo cannot simply wear a pump. All of his medication must be delivered via injection.
For children, diabetes management happens on a "basal bolus" system -- which means you give them two types of insulin: a slow acting "basal" insulin (Lantus, Levemir) to generally suppress sugars throughout the day, and a fast acting "bolus" insulin (Humalog) to either match carbohydrates consumed, or to help bring down a high blood sugar quickly. The time it takes bolus insulin to work is about 2-3 hours, which means you cannot give a second dose before the first one has finished working. Hence, a careful log must be kept so that you don't inadvertently overdose your child with insulin, and drive all the sugar from their blood stream. If the blood sugar gets too low, you run the risk of seizure and coma, which is why diabetics always travel with juice and candy — so they counteract the side effect of their medication with sugar.
My wet bar has become a nurses station, and we never leave the house without our trusty “red backpack,” which holds our diabetes logbook, medicine kit, and an assortment of snacks and other supplies.
A wet bar transformed: where a different sort of late night party happens — Mylo requires 24 hour care.
Managing diabetes is a bit like a game of ping pong. All day long the sugar goes up and down. As a care giver, you try to play the game to keep the arc of these ups and downs within a certain range. You do that by being attentive to nuance and understanding how the body responds to the carbohydrates in certain foods, as well as how the needs of the body change throughout the day. Mylo gets different doses of insulin throughout the day, tailored to his bodily rhythms.
The ping-pong game of diabetes. Can you fly your blood sugar plane in the green zone?
In the beginning, all of this was a massive anxiety and chest pain inducing nightmare. Gone were the days when I could just feed Mylo "whatever." Now we had to eat a pre-planned meal on a schedule, and EVERY TIME there would have to be this carbohydrate counting ritual. I quickly learned how many carbs were in everything. I made charts for myself, and I was suddenly conscious of the nutritional values of food packages in a very different way. I never imagined that I would be one of "those mothers" toting around a bag of medical supplies and pulling out a kit of syringes every time we have a meal. Let me tell you, I am hyper aware when I go out to dinner of the experience I am creating for our fellow diners. Having a kid with Down Syndrome is uncommon enough and always stirs up feelings whenever we encounter someone; but the whole diabetes ritual is like an added curiosity. We seem to create a moment of reflection for others: maybe they are feeling sympathy or gratitude for their own typical children, or empathy for our situation? Maybe they are reminded of their love for someone else in their life with Downs or Diabetes? Or maybe they could simply be the type of person who sees people like Mylo as special in the way that four leaf clovers are special…
Whatever the case, we do not pass unnoticed, especially when I pull out the syringes. It’s not everyday you see someone stick a needle in their kid during brunch.
As someone who has avoided the treatments of western medicine my whole life, Mylo has brought me to a heel. When he began treatment for diabetes, his health dramatically improved. He put on weight, the shadows under his eyes disappeared, and he stopped being so sick and thirsty all the time. I humbly bow down to the simple power of insulin. And for someone small like Mylo who weighs about 50 pounds at this point, he is still (6 years later) on the same 1/4 unit correction scale as when he was first diagnosed. That means he gets 1/4 unit of insulin for every 50 mg/dL of sugar in his blood over the value of 150, to bring his sugar levels down into our target range. Do you know how small 1/4 unit is? It's something of a challenge to draw up, even for seasoned nurses. A quarter unit of insulin looks like the head of a pin. I put a speck of medication under his skin, and it works like magic.
Just a Speck full of medicine makes the sugar go down, the sugar go down, the sugar go down...
If you've read my backstory, then you'll know I went through a dark night of the soul before piercing through the curtain of my own chrysalis. The diabetes diagnosis came right in the middle of it all. About a year into Mylo's journey as a diabetic, I began to alter my emotional approach to the situation. For months I had been living in a state of grim resistance to my diabetes kit and logbook. It was a constant chore, a never ending math problem; and to make matters worse I had (as often happens) on rare occasions, accidentally given him fast acting humalog when I should have given him slow acting lantus -- oh the panic and the ensuing carb fest to head off a massive dip in his blood sugar... Sadly this is so easy to do. The repetitive hand motions of drawing up the medication become so automatic that sometimes my hands wanted to do the business without help from my brain -- sort of like how your body learns to drive a car. This is why you should never talk to nurses while they are drawing up medication.
But I digress...
I decided I couldn't hold on to all of that anxiety and dread and avoidance; my life was my life and if I was going to have any sort of peace for myself I had to embrace the situation. I decided to pair an act of meditation with his daily blood sugar checks and insulin doses; I made myself present and focused, not only on clearing my mind and focusing on the task at hand, but also on the repetitive movements my hands had to perform. I thought to myself, "if this is the little dance that my hands must dance with these instruments every 2 hours, then let me bring as much presence and grace to these movements as possible. Let me perfect them." So I started adding in some finesse and precision to my moments, and I surrendered to the reality that the only thing I had to do in those few moments was to care for my son to the best of my abilities. Nothing else was more important.
This is also what I tell myself every time I must awaken from a dead sleep at 3:00 am to give him a correction.
Now it is the winter of 2018, and 6 years ago that Mylo was diagnosed. I am at ease with Mylo having diabetes, it is part of who he is and it has shaped me in beautiful ways. I know so much more about sugar, which has improved my own health. Most of the carb values I have memorized at this point, and since I work as a chef I have a good sense of portion and weight, so I can construct a meal for my son with relative ease compared to the early days. On days when I am able to keep his sugar flying above the sea and below the clouds, I feel immense satisfaction. And on other days when he is inexplicably high or low, I forgive myself and remember that this is the ebb and flow of diabetes -- and just like life, not every day is perfect. You just have to take it as it comes and respond.
The truth is, a response is always required, because being alive literally means to be responsive. Something aways needs your attention, your interest, your actions. Whether its the pot of rice on the stove, the bill to pay, the child with the runny nose, or an unfolding catastrophe. How you choose to respond is how you write the story of your life. Your response to the world is your brushstroke across the stars.
