College Planning for Your Chronically Ill Child

Parenting is hard. Parenting a chronically ill child is even harder. Add a rare disease or two to the mix and well, it’s tough. There are so many unanswered questions, so many scary decisions that have to be made, so many what if’s. Over the years, I’ve learned a lot about parenting a chronically ill child. We have made a lot of mistakes and by the grace of God, a lot of good decisions.

One of the best books I read very early was Love and Logic’s  Parenting Children with Health Issues. The real life stories and scenarios were parallel to our world, especially when no one around us understood our struggles, had heard of her diagnosis and couldn’t fathom our heartache.


But now Maddie is a teenager, a junior in high school and we are looking at colleges. It feels like we are in unchartered territory.

Do a google search  that includes chronically ill and college planning and the results are limited at best. So, like everything else in Maddie’s life, it feels like we are once again on an island of the unknown trying to figure out what to do and where to go while we are already lost.

But, if the last 16 years have taught me anything, it is to research, research and research some more and keep a spreadsheet of my findings! So that’s what I did. Maddie, Doug and I have talked many times about what she wants to pursue as a career and we used her ideas as a starting point.

We came up with a set of criteria to measure the universities that we were interested in and added colleges as we found them. Besides the requirement of having a music degree, Maddie didn’t want to be too far from her doctors (or us), didn’t want a university that had a sprawling campus, she wanted small degree classes, options for her limited diet, and cost was a factor.

Below you can see a portion of the spreadsheet.

Screen Shot 2017-03-14 at 3.38.07 PM

Then last fall we started visiting schools and Maddie took the ACT. People were surprised that we were already so serious about college planning, but when your child is medically fragile, you don’t have the luxury of winging things.IMG_8230

On our first round of visits, we learned that the size of the campus was going to be a crucial factor in the ultimate decision of where Maddie would go to school. One campus was sprawling, one campus a little smaller but the classes would be back and forth and back and forth in different buildings all day, and one campus was incredibly beautiful.. but tons of stairs.


The ability to get around the campus easily knocked off some good contenders, but in order for Maddie to be the healthiest and most successful, she can’t put her body in a position to climb hills and stairs all day everyday.

During this time Maddie also was researching career options in music and came across Music Therapy. This was a light bulb moment for her. Music Therapy would use all of Maddie’s skills and talents AND life experiences! In choosing to narrow her career path even more, the college options changed and focused in again.

Instead of looking a dozens of universities, we were now looking at four that had music therapy degrees knowing that if none of these fit she could just major in music and get her master’s degree later.

In February, we scheduled a visit and met with an admissions representative at the university that is her first choice. (Texas Woman’s University)


It was a cold and rainy day, but the university felt right. Hallelujah! Everyone we met was so helpful and nice and encouraging!


Will Maddie go to this university? I don’t know. I think it is a definite probable. We still have to figure out some of the logistics like the need for a private room and things like that, but based on the criteria we came up with and the good vibes we got on campus, I’m hopeful.

So what have we learned so far?

  1. Create a criteria sheet (like a rubric used in school, creating criteria keeps the emotion in check).
  2. Start early. Schedule a college visit the fall of your Junior year if not before. Maddie had spent time on two different campuses during the summer at camps, so that gave us a head start.
  3. Take the ACT and/or SAT by the fall of your Junior year. By having test scores available when talking to the admissions representatives, we were able to have initial conversations about possible scholarships.
  4. Know your class rank and class size. GPA is good too, but it is the class rank that was important for our conversations about automatic acceptance into the different universities.
  5. Go on the tour!! I’m not a big fan of scheduled tours of any kind, but the walking tours with the campus representatives have been incredibly enlightening. At one university we walked the entire campus, but we only went inside a few of the buildings. Disappointing! At another university we met the university president while on the tour. Very cool! At the third university, we got to go in the buildings where Maddie’s classes would be and random students offered to help answer questions when the tour guide didn’t know much about the music program.
  6. Establish a contact with an admissions representative. Maddie contacted the admissions rep prior to the visit with some dual credit questions. The admissions rep remembered her and was very complementary about Maddie’s initiative and willingness to work hard to be ready for college.

Finally, my most important lesson is to look at the degree program and classes NOW.

Maddie’s chosen degree has her taking 18 or 19 hours each semester of college. There is absolutely no way that her body can handle that. When we discussed this with the admissions rep, it was suggested that Maddie take ALL of her core classes outside of the normal fall/spring class cycle and were encouraged to get as much of them done via dual credit and/or community college before arriving on campus her freshman year. With this in mind, prior to scheduling Maddie’s senior year of high school, we talked classes and put together scenarios over and over.

It was weeks of work. But we were able to rearrange her course load so that she will be able to take 12 hours each semester. This means that this summer, yes, the summer between her junior and senior year of high school, she will take 9 hours at the local community college. All 3 classes will go towards her college core and 2 will be used as dual credit for high school.  She will then take another 6 hours in the fall and 6 in the spring. So essentially, we are taking a 4 year program and backing it up into high school and making it a 6 year program. Given the availability of in-person and online dual credit classes, there is no reason to wait and retake a course later.

Getting your child ready for college and making decisions about careers is hard. But unlike the tests that Maddie is facing this week that required 9 vials of blood, these decisions are pretty basic in the grand scheme of things.

One of the lessons we have learned from having a fragile child
and having to fight for her everyday
is that we know that choosing the
“wrong” university or “wrong” degree path
isn’t life and death.

If all of our research, planning and preparation end up with her at a university that isn’t a good fit,then no worries, she can transfer elsewhere.

If only she could transfer away from her rare diseases and chronic illness.

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