A Love Letter To My Son With Type 1 Diabetes

Lukey,

It’s been four years today that you were diagnosed with type 1 diabetes, a chronic condition where your pancreas produces no insulin. I had first noticed the weight loss. One pound. Slight, but concerning to me. I had you fully worked up. I fought for you. I really did. I knew in my heart something wasn’t right. Four-year-olds shouldn’t lose any weight. They shouldn’t be fatigued.

But your tests had all come back normal. Then came the thirst. Unquenchable. Unrelenting. I can still remember the pediatrician’s face when the finger prick came up at 568. You were four, tiny and vulnerable. Within two hours, the endocrinologist had seen us, sent us to nurses for training, and I was out the door and responsible for managing you. They explained that without enough insulin to break down the sugar you were eating, your little body had turned to breaking down your fat for fuel.

Left untreated, you could have died. Died. They said you’d be insulin dependent for life.

That night, I gave you insulin injections and took your blood sugar with my novice hands. You never complained. You never cried. Not once. It was so much to digest so quickly. Too much insulin you could die. Too little and you could also die. But we learned the language of type 1 quickly, how to count carbs; to calculate your carb to insulin ratio; to adapt when you exercise, when you’re sick, when you grow.

In an instant, type 1 became a constant in our lives threatening to bring chaos. But we have tamed the beast, and you are thriving. It will never relent, and neither shall we.

Four years now, I have carried you into my room every night. It took you months before you finally asked me, “How do I end up here every night?” I said I bring you here so you are close to me, so I can catch a low; so I can catch a high; so I can listen to you breathe. I could barely lift you out of your bed last night. You’re almost eighty pounds now. I know the day is coming when I won’t be able to carry you anymore at all.

What will I do then? Will I ever let you sleep alone? The one night I let you sleep in your room, I didn’t hear the alarm that your sugar was low. You didn’t wake at all. They call it hypoglycemic unawareness. Had I not woken to pee, you could have died.

There are so many type 1 warriors who live full lives. And I never want you to use this illness as a crutch, but always be mindful of its potential. This disease isn’t a death sentence, except that it could be. We can be on top of everything 99% of the time, but it will only take that one untreated low or uncorrected high to take you from us. We always have to be mindful of that.

Son, I want you to know I think you’re so brave. I know it’s hard to be so little and to be so different— to sometimes not be able to eat what everyone else is eating; to have to remember to carry your bag and to turn your pump off before exercising and to bolus twenty minutes before you eat; and to remember to account for some foods digesting slow and some digesting quick when you do your bolus.

I’m trying so hard now to manage this for you the best that I can, but I know ultimately you need to manage yourself. And I know you will.

Two years ago when Pop Pop died and Daddy and I had to go out of the country to El Salvador for his funeral, your pump failed and we panicked. Your grandmas tried, but they couldn’t figure out how to change it. With your sugar climbing, they had to take you to the endocrinologist’s office at the hospital. It was Christmas Eve, and the nurse who changed it was an angel.

But last month, when the pump failed, you walked our friend through changing it step by step. How to wipe your skin, how to prepare your arm for the insulin pump, how much insulin to draw up, where to put the new pump. He said he couldn’t have done it without you. I was incredibly proud of you. Your resilience. Your strength.

I’ll be honest, Lukey, it’s hard for me not to wonder sometimes if I did this to you. Was it something I ate, or that I didn’t eat? Was it the silver filling I had removed in the first trimester of pregnancy? I had insisted on a dental dam, but did they really use it? Where could this have come from? And now with COVID-19, I wonder the same. Am I doing the right thing keeping you home? Your body has never responded well to being sick, but will your mind recover from being isolated? My lawyer’s mind always runs the risk benefit analysis, but on this I am unsure. How do I calculate the balance between your mental and physical health? But I know doubt is not a productive language to speak. It won’t move us forward.

So, Lukey, please continue to be strong for me as you grow. Don’t be resentful. It might not seem like it but there are people who have it worse. There are children with conditions that aren’t treatable. And you have access to so many things that children around the world with your condition don’t have. Be mindful of others with your disease even in this country who cannot afford insulin and insulin pumps and continuous glucose monitors. Be appreciative.

You have such an amazing support system of friends, family, teachers, doctors and nurses. Remember to thank them all the time and to show gratitude. I promise to advocate for you all the days of my life, but promise me you’ll always advocate for yourself. And that you will educate others about this disease, and the physical/mental/emotional/monetary costs it charges. Last, remember son there are 1.6 million Americans who wake up every day just like you. You’re not alone.

I really feel like you can end this if you just think about it long enough. I imagine you and your brother and sister sitting in your dorm rooms huddled over biochemistry books— you guys got this; you can do anything; how hard can it be?

Love,

Mommy