Our Norm Gets Skewed with IBD

After reading another writers’ work, it made me think of this quote:

“There are moments which mark your life. Moments when you realize nothing will ever be the same and time is divided into two parts, before this, and after this.”- Unknown

There were two moments like this in my life that proceeded to change me and utterly shake me in profound ways. I won’t get into the details of them now but it made me stop being a little girl who trusted and believed in the good in everyone but instead, I trusted and believed in the good in my parents only.

More specifically, my dad. The second event that occurred compounded with numerous other things that I was dealing with on a daily basis, left me feeling like the only way anyone would listen to me is if my dad spoke. I have talked before about how I felt like I had absolutely no voice or say in anything that was going on the second I stepped foot in the hospital.

Well, these two moments made me who I am today. It made me distrustful, it made me afraid to be alone in a medical facility, but it also strengthened my dad and my relationship enormously.

My dad and I were always close but we developed an even closer bond because of ulcerative colitis. And because both him and my mom were the only ones I would go anywhere with when I wasn’t feeling well, my relationship with my parents was far from the norm.

I never realized how much of the mother-daughter aspect of things I missed out on growing up until recently. I never cared about make up or hair because just showering and wearing clothes other than pajamas or sweats was a stellar day for me. Being diagnosed with IBD at the age of 13 completely and totally shifted my mom’s priorities too. She became my caregiver and I was the patient. We didn’t have time to care about some of the more fun parts of life. I never spent hours getting ready with her for a special occasion because I wasn’t someone who sweated the small stuff. I also rarely had the energy to spend that kind of time on something I deemed superficial. If I was able to go somewhere, I was just happy my body and health allowed me to do so.


But the last couple of days we actually have been doing some fun things together. She was trying on some of the makeup she has on me (and I do feel like I look like I am in a play) but it is enjoyable to just do “girl” things with my mom. I feel like our relationship has always been about such serious things. Do I have my large intestine removed or try more awful medications? Do my 106 degree fevers warrant an ER visit or can we wait it out a little bit? It was actually nice to have the biggest decision be if I should get the “light/medium” or “medium” shade of foundation. Or, would brown eyeliner look better than olive green since we already realized black was too dark. {my kind of trial and error}

These are the types of decisions I want to be making with my mom! We got so accustomed to making these life altering decisions that it became our normal. But the reality is that it isn’t the least bit NORMAL. Most mothers and daughters don’t sit around discussing the benefits of having organs removed, or dealing with the emotional ramifications of needing to have a piece of intestine out of your stomach because there are no other options.

It is kind of mind blowing to really think about all that goes along with a diagnosis of Crohn’s disease or ulcerative colitis. So many things you would never in a million years think about actually become just part of your usual day to day existence.

It was eye opening to me how much of these seemingly minor things I missed out on. It was weird to me last month to spend the week with my dad working in his office and actually laugh with him in the city. I am just starting to wrap my head around the idea of doing enjoyable things with my parents, and making decisions that aren’t about life or death. I think the three of us are all trying to change our mindset a little bit.

Inflammatory bowel disease is a family disease. It affects everyone differently but it impacts every single person in the family. It changes relationships; some for the better, some worse and some just may be different. But, as long as the love is still there, it is never too late to enjoy times you may have missed out on with the people in your life who love you, care for you, and have always supported you.

  • val0525

    How True!! I am so happy to hear that you are trying new and fun things. You are beautiful inside and out!! I am sure that your Mom is enjoying this as much as you are.

  • Jodi

    So glad you are getting to “rediscover” your relationship with mom.
    Especially being able to do “the girly things” your dad would look funny in olive eyeliner. :) All kidding aside, it is always a blessing to be able to renew or reinvent (or better yet) grow and evolve a strong relationship you already have. I am so happy for all of you.

  • Jana Rosenberger

    Well said! I can’t imagine having IBD that young, but I totally understand how it changes relationships. My mom has been trying to do the girly thing with me lately, asking me what I’m planning on packing to wear for vacation. Hahaha, and I can’t help but think, oh my gosh–I’m more worried about what medications to bring and should I pack a blender so I can make smoothies! Hahaha! The norm really does get skewed. Its crazy how quickly it happens too!