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Kirbi was diagnosed with Crohn’s Disease at age 10. She later had a resection in 2009. Kirbi is now attending Kendall College for Art and Design for illustration. Check out her art work on her website Kirbi Fagan Illustrations. Kirbi is a great example of a child who was sick but has grown up to be an amazing, strong adult because of her struggles! She is also a counselor at the Michigan Camp Oasis.


For Parents: 3 Things Your Chronically Ill Child Needs

It’s difficult to know how to relate to your child when they are suffering. I am not a parent myself but I was diagnosed at a young age. Here are three helpful tips to connect with your sick kid of any age.

 

1. Validation

As a youngster it was very important to me that people understood that even when I looked fine that I was still struggling. Let your sick kid know how impressed you are that they living life with a challenge like IBD.

Words I liked to hear as a kid were things like…

“I can’t imagine how you are feeling…”

“I’m so proud you made it to school ALL day even though I know you aren’t feeling well.”

“I bet all those bathroom trips and pain made it really hard to take your test.”

“I don’t know how you do it!”

2. Independence

Though I don’t have a child with IBD I can only imagine how difficult it would be to resist taking the reins and controlling their every move. Give your children the opportunity to be the one to talk to their teacher about their illness and help them find the words. It takes courage! Don’t email the teacher every time your child has an issue. By the time they are in college they will find it easy to tell their professor about taking multiple bathroom trips during a lecture or needing to turn in a paper late. If you need to intervene, I always appreciated when my parents did so quietly. Perhaps parents, you could leave their medicine on the counter and they could have the responsibility to remember to take it. You very well know if they eat that pizza slice they won’t feel well later that night. It’s time for them to learn if it’s worth the diarrhea.

3. Acceptance

If you can’t accept their illness how will they? When your child has been diagnosed you have a choice to fight. Choose to be positive. Allow the trials of IBD to give your child strength. Sometimes there are things that your child can’t participate because of their adversity and that’s okay. As much my parents encouraged me to do every activity I could they allowed me to say no when I needed to sit out. Whether it was a soccer game, sleep over or school play my parents never allowed me to feel guilty about canceling plans or using my privileges at school.

In high school, I took the ACT and I decided I didn’t want to open my score that came in the mail. I knew that good or bad, I could have done better if I hadn’t missed months of schooling. I had faced bigger things, it wasn’t worth being upset about and to my parents that was okay. To this day, I don’t know my ACT score… or how to long divide.

Coming out of the IBD closet Brenna’s Story: I know I can do anything when I put my mind to it

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  1. Jennifer says:

    Kirbi –I AM the parent of a child with IBD, and your advice is terrific! We try to always be positive and supportive but let her take the reins where possible. We think our encouragement for her to be open and honest about her disease has given her incredible strength and poise at a young age — traits which will be useful her entire life. Thanks for your post!

  2. Kirbi says:

    Sounds like your doing a great job! When I was a kid it was just as much my parents disease as it was mine. I’m sure your encouragement will get her through all the years ahead of her!

  3. ashley says:

    i don’t know long division either! yaay! haha

  4. Kelli Grimm says:

    Great advice! We pretty much do all those things with our son who is 11. He was diagnosed 4 years ago. Funny how you mention the pizza bc that was our first independence choice. He’s old enough now to make choices fully knowing the consequence. And more often then not he wants that slice lol. His pills are on the counter in a pill box since he has quite a few to take, but it’s up to him to do it. Of course we double check and sometimes reminders have to be given. I think it’s makes dealing with IBD a little bit easier having say in treatment options, choices of daily living and such. Great advice…thanks again

  5. Clevell Koon says:

    What an inspiration you are Kirbi!

  6. Kirbi says:

    Keep up the great work! Great point about you child being apart of the treatment options, even if it is just educational… so important!

  7. As a “grown” child with IBD I find the lessons here great advice. These are all things that I still struggle with and facilitating approaching them with a sense of empowerment in childhood is wonderful. Of course that doesn’t mean the grown child with chronic illness will always feel confident, be able to easily advocate for themselves, or build themselves the type of support they need-these are never ending processes and the chronic illness road is long. But, again, this is a great start and good advice/reminder at any stage. Thanks Kirbi!

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