How do I tell my son his pancreas is dying and that type 1 diabetes is coming for him too?

When type 1 diabetes (T1D) came for my then four-year-old son, we didn’t know any better. It caught us off guard—he had lost a pound, he was thirsty and waking to urinate. I had asked my pediatrician for a finger prick for peace of mind, and he confirmed my son’s blood sugar was perfectly in range. But the reality was T1D already lurked in his body, taking refuge in his pancreas, slowly destroying his inlet cells, causing him to lose the ability to break down sugar. His body had resorted to breaking down his fat to survive. That one isolated blood sugar reading masked the truth, providing false reassurance. Months later, when I held my limp son at the doctor, the blood glucose reading of 565 felt like a slap in the face. My darling baby’s pancreas was dying, making him tired and weak. And I had told him to push through and keep going, having written off his behavior to laziness. Although shocked, I didn’t cry in that moment, staying stoic for him. But I also hadn’t known exactly what it meant to live with T1D, or how fundamentally it would alter our lives, or how much insulin costs. But now that the same disease is coming for my oldest son, I know exactly what it means, and my heart is broken.

My twelve-year-old has participated in the TrialNet type 1 diabetes prevention trial for six years, since his younger brother was diagnosed. As part of the trial, they check his blood for any of the five markers associated with T1D. Two out of five markers in a person’s blood mean T1D is almost certain to develop. My son had been identified with one marker (GAD-65) from the start, and every year I waited anxiously to see if it progressed to two markers. But this year I was very nervous it wouldn’t be good news. A viral infection triggered T1D in my younger son, and I worried my son’s recent Covid infection would trigger the second marker. When the call came in, I was standing in Publix pushing a cart of groceries, staring at a sign trying to find taco shells. I knew the phone number, having communicated with Juanita many times over the years so I answered immediately. After exchanging pleasantries, she cleared her throat, and my body instinctively braced for the hit, my fingers clenched the bar of the shopping cart. I knew in my heart before she even spoke the words.

“Unfortunately, your son now has two markers, GAD-65 and ICA,” she said.

I didn’t mean to cry uncontrollably in Publix, strangers walking by staring, but I couldn’t help myself. I understand type 1 diabetes isn’t cancer. You can go on and live a fully productive life. This isn’t a death sentence—until it is, until you sleep through one nighttime low, until your pump disconnects causing your blood sugars to skyrocket to bring on DKA, until you lose your job and can’t afford insulin. My eyes are wide open for what this will mean for my son, and for what this will mean for our family, and even for what it will mean for me personally. I’ve had a hard time being one child’s pancreas, and now I’m about to be two. And I know my son, who has spent the last six years watching us take care of his younger brother, will know exactly what it means too. I keep trying to figure out a way to tell him, but the words catch in my throat. I’m nervous and scared for how he will adapt to this possible new reality. He needs to go for additional testing, an AIC and a blood glucose tolerance test to see if it’s beginning. Not telling him feels dishonest. He’s twelve. He has the right to know his pancreas is probably dying. But how will he process this when I still can't?

How did this happen to my boys? I feel tremendous guilt that it’s them and not me, and that somehow, I could have stopped this. What did I do or not do for this to happen? How did I fail to protect them? So many doubts and worries are floating through my mind, coming like a current that I can’t swim against. Will he still be able to go to space like he always wanted?

In addition to the personal toll this disease charges, having to monitor every carb they eat and dose themselves accordingly, and treat highs and lows, playing a constant game of cat and mouse to keep their blood sugar in line, there is the financial toll. I worry how my husband and I will afford this, our deductible already at $450.00 a month now doubling to $900.00, but I know at the end we will be fine. We can afford this. It will hurt, but we can manage it. I know others aren’t so lucky. I worry most about how my boys will pay for it when they are grown. My two sons will live with an expensive life-long medical condition, paying overinflated costs for a generic drug that they need to drip into their body minute by minute. My boys will have no room to mis-step. They have to stay steady and keep themselves employed and insured. They will bear a medical scarlet letter every day for the rest of their lives.

I have spent the last years of the Trump presidency living in fear that the Affordable Care Act and the provisions protecting those with pre-existing conditions would be overturned. They came so close, and if it wasn’t for Senator McCain they would have succeeded. Who would insure my sweet boys then? No one. My church emailed praising the Dobb’s decision, and I had to email back and formally resign. Their victory came at the cost of protecting my children and other medically vulnerable children, showing that it’s about control and not compassion. Insulin affordability is a real threat. Diabetics need insulin to live, it is like water. And the costs are staggering. Think of what you are paying for a gallon of gas and multiple it by 55, that is what I pay for one vial of my son’s insulin and he uses three vials a month.

The Inflation Reduction Act included a provision capping the insulin at $35.00, but the Republicans challenged it on procedural grounds. The bill needed sixty votes to overcome the objection, and only obtained fifty-seven, with seven Republicans crossing the line to join the fifty Democrats. We lost by three votes, my own state’s Senators voting against it. I agree that the provision wasn’t perfect. It did not provide access to the uninsured, but it would have been a baseline to help us move forward.

These Senators have no idea what it takes to live with this disease, how when my son’s sick with the flu I have to monitor his urine for ketones every couple of hours, spoon feeding him fluids while he sleeps to prevent DKA from setting in, or after my son swims all day how my husband and I spend all night next to my son’s bed shoving juice in his mouth and praying he drinks to combat persistent lows, or for what it means for my son to have to be constantly aware of what he is eating and how it will affect his blood sugar, or to have to stop mid soccer game because his sugar is dangerously low and he could have a seizure. But my son, and I, and our family are well aware of what it means to live with this disease. With all they face, adding such a high financial burden seems unfair and cruel. Type 1 diabetics also live better lives with less risk of complications if provided access to insulin.

Even though I don’t know how to tell my older son his pancreas may be dying, I know that no matter what happens I will teach him to advocate and to fight to raise awareness. You will not be part of the conversation if you don’t fight for a seat at the table. And I will tell him that if he has to live with this disease, at least he’s living at a time when medical advances are making it easier. Even though I’m angry that political squabbling (on both sides) is blocking a path to insulin affordability, my boys are so lucky to have this disease in our country, with access to insulin pumps and CGMs. My younger son’s new insulin pump has helped tremendously with him living as normal as possible. For this, I am grateful.

Through the efforts of TrialNet and JDRF, my son will hopefully be eligible for a new drug, anti-CD3, that might delay the progression of his type 1 diagnosis from 2.5 to 7 years. When my youngest son was diagnosed, I felt incredibly guilty to not have caught it sooner, but my pediatrician assured me nothing could have been done to stop it anyway. That isn't the case anymore. The possibility of delaying my son being insulin dependent during his teen years when he's hormonal and insulin resistant is amazing. But this new drug will only be approved for use in people in the early stages of type 1 diabetes--not those fully diagnosed. Accordingly, I hope the medical community makes an effort to educate and screen anyone with familial connections for markers. And since 90% of newly diagnosed patients have no familial connection to T1D, I hope they push to make A1C checks at well visits standard, or at least to screen those presenting with the early signs for markers.

I will also make sure my son knows how lucky he is to have so many people on his side. Our friends and family and doctors have been so incredibly supportive of his younger brother and his JDRF walks, and I know they will do the same for him. Most importantly, I will tell him that he will have his brother by his side. They can draw strength from each other on days they feel weak. They will share something unique that my husband and I will never fully understand, what it feels to go low, what it feels to go high.

I pray so hard they stay mentally strong and don’t become resentful. And that our family stays mentally strong. I pray that they never let this disease stop them, that they climb every mountain no matter how high.