When Your Child With Chronic Illness Leaves For College

When Your Child With A Chronic Illness Leaves For College

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When I ask you to sit down with me and set up some rules and boundaries for living on your own next year, hold the eye rolls and annoyed sighs and put yourself in my shoes for one minute. As a mom, I worry. I worry more in one day than you do in one year. I have lain in my bed staring at the ceiling dreading this day for years and yet it’s here and I’m still not sure how to handle it.

You have a chronic disease, like Type 1 Diabetes, epilepsy, or Crohn’s. It’s a big deal and as parents, we try to keep it in the shadows and live a “normal” life. The dangers creep in at night. The small mishaps like missed insulin, not enough food, the complications that you suffer when you catch even the most basic cold and flu bugs. I don’t like saying it out loud, but you could die.

You could die from any of these things because you can’t take a day off. Heck, you can’t take an hour off, and that scares me because at home I always knew when you were ignoring your diabetes and not dealing with the highs and lows of your blood sugar. I could pester you to check your blood sugar and you would comply. I could force you to get up and find your test kit and you would.

But who is going to do that now? I’ll say it again, you could die. You could die all alone in your dorm room and I won’t be there to save you with a sugary soda or a glucagon shot. I can’t live with that fear. I just can’t.

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So hear me out: Rules and limitations could save your life and if you don’t want to believe that, then know that they might save my life. I can’t let you go without knowing we have a deal. I can’t let you go without you agreeing to keep yourself alive every single day. I hate it, but it’s true. I can’t let you go until we have a deal.

I wish we didn’t have to have these conversations. I wish you could move to the dorms, get mononucleosis, skip classes, be dehydrated, and deprive yourself of sleep like a lot of freshmen will, but you can’t. We have kept your disease in the shadows, but we can’t pretend you are the same as the rest of your peers anymore.

You’re not the same and until there is a cure for what ails you, you never will be. So, I’m sorry, but the rules for you are different. Hate me if you need to, I can take it. Just don’t ignore me. Just don’t cut me off. I’m actually your biggest fan and your greatest supporter, but I need to keep you alive.

There are no words for how much I hate your disease. There isn’t a measurement for how hard and how long I’m willing to fight for you. We need to face this together. We need to work together. So, please, take one minute and put yourself in my shoes. Let me order your prescriptions and make sure you have them in your dorm room. Let me schedule your doctor’s visits over the breaks when you will be home. Hear me out on my plan to check in and monitor and make sure you are okay.

I want to help. I want to let you take care of yourself and keep your independent spirit alive, but I need a little hand holding before I completely let go and you might actually need some hand holding too.

You have always been my fierce fighter. I never tried to break your spirit and make you comply to norms. I encouraged your independent nature and your sarcastic sense of humor, so I’m not a total kill-joy.

School will be challenging. The curriculum in college is rigorous and you are about to experience a major academic slap in the face. Your homework is going to multiply, you need to make friends, you need to get your own meals, you will be walking a ton to get to and from classes. Your whole life is about to change; let me take some of the burden that your disease brings.

I can’t give myself shots, that won’t work. But I can order insulin and keep you supplied with syringes all year long. Nausea medication, yes, I can order that too. Outsource these tasks to me. It’s not leaning on me. It’s not you being weak. It’s us working together. It’s us winning.

Let’s pull your disease out from the shadows and drop it on the table in front of us and dissect it into small pieces. Let’s divide up any tasks or burdens that we can. Next year will be amazing if we are on the same page. Instead of being annoyed with me, let me in, you can kick me out later…maybe not, but let’s go with that for now.

I’m all in, are you?