I feel overwhelmed as college approaches for my son with EB

Look here. I don’t know how it happened, but we are already in October of my baby’s senior year of high school. And I don’t know if you know this, but the thing that typically happens after a senior year is this thing called college. And preparing for that is, I’m sure, overwhelming for any parent. But preparing for that as a parent to a special needs child is … well, I don’t really know because I’m mostly still fetal-positioning this whole thing.

I know I have written about this before, but it’s just where I’m at. So if you are bored of hearing about the fact that Jonah, my 17-year-old with epidermolysis bullosa (EB), wants to live independently on a college campus next year and that I have no idea how to prepare him (or me!) for that, you may just want to move along. No, wait, please don’t leave me! 

(Sorry, I think I’m projecting.)

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Making sure to remember how far we’ve come while living with EB

I have considered it the honor of my life to care for Jonah all these years. After we lost our first child to stillbirth in 2008, when Jonah was born the following year, I was in full fight mode. Flight was not an option. I was going to make sure he lived (and thrived!) or die trying. And I did. From three-hour dressing changes, to hand steaming and blending all of his tube food, to sweeping up his projectile vomit (sorry for TMI) in a dustpan so I could measure it to see if he kept anything down (pre-lifesaving feeding tube), to keeping a binder with every bit of information the doctors gave me or that I read online about living with EB, there was no one more dedicated to figuring it out and doing the hard things than I was.

It was the right thing. And I’m so thankful that God and my incredible support network gave me the fortitude to do it.

The downside is that I have been a crutch for Jonah for almost two decades. Sometimes I needed to be that crutch. Sometimes I should have just been a cane, or maybe even just a walking stick. Sometimes I probably should have been a swift kick in his pants so he’d have to struggle and learn to do it on his own.

Regardless, here we are. In addition to things like laundry, basic cooking skills, cleaning, and better organization, which all parents help their kids with as they prepare for independence, we are facing things like finding workarounds for buttoning shirts, putting on tight-fitting (but cool-looking) shoes, and opening containers. Not to mention wound care, bandaging, pulling up meds, and tube feeding.

Battling mental overwhelm

I have to be completely honest. I am overwhelmed. I don’t know how to anticipate, think through, and pre-solve all the obstacles to help him be successful. And I know, from the outside, it’s easy to say all the cliche things like, “He will figure it out,” or “It’s normal to be worried,” or “Struggle is good for them,” or “All kids figure it out eventually.”

I am certain those things are true. But they don’t negate the fact that it is truly our responsibility as his parents to prepare him for as much as we can. And that with a disorder as complex as EB, which affects every single aspect of his life, the list is so, so long. Regardless, it is our job to figure out and find the hacks that can make his really hard life easier.

So have I scheduled the college tours yet? No, because first I need to get in touch with the schools’ residential services and disability departments so I can coordinate the special tour with the every-other-kid tour.

Have I helped him apply for any colleges? No, because he is waiting for me to do it for him (look at me, I’m a crutch), and that’s making me mad, so I’m digging my heels in until he realizes that the first step to being successful in college is actually applying to it (mostly) on his own.

Have I looked into scholarships and financial aid options?

Sir. Ma’am. Did I mention I need to help him learn how — with heavily blistered fingers — to button his shirt?!

I know it will be OK. Truly, I know it. Maybe after I finish writing this, I will email his top school’s residential department to see about touring the disability housing. That’s not a hard thing. It’s not a big chore. All I have to do is take the first step to start chipping away at this I’m-completely-overwhelmed wall I’ve built.

It should be easy, right?

Just like buttoning a shirt …

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.