Mary and her daugther with Ulcerative Colitis

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What does this mean?

When my daughter was diagnosed with Ulcerative Colitis in 2010 just days before her 10th birthday, the “Why?” of course came into my head but it was quickly overcome with, “What does this mean?”

What it means is, as a parent, your “new best friends” are your child’s medical team.  There is no easy road or answer with IBD, whether it is Crohn’s or Ulcerative Colitis.  And to get your child into that magical place, the world of remission, it takes work.  The best way to accomplish this work is through teamwork and that is done with an integrated medical team and that you and your child are on and your child needs to become the “quarterback” for their care, someday.  That process starts the day of diagnosis.  Your child’s care must be done “with them” and not “to them” and that includes you.  Thankfully at our care center, patient-family centered care is a hallmark and her state of wellness today is a testament to that approach being successful.  As a parent, it means you must teach your child by modeling the behavior they need to learn with their medical team because sadly, they grow-up and it is a special life-skill they cannot live without.

As a parent, I had to teach my child how to communicate symptoms to her medical team in meaningful ways. With maturity she had to learn her limitations and to “stop” when she felt her body changing.  When something was not right, then it was her job to communicate that something was not right.  This does not happen overnight, but it will happen when everyone is tuned-in and talking.  I have learned that this disease rears its ugly head over time and is not like flipping a switch of – fine one day, very sick the next.  While it can seem so, we learned early on that there are many early, very subtle signs that point to trouble.  Learn those for your child.  Be watchful and vigilant, but not overbearing.  Learn not to make the disease the “center of attention” in their life and yours.  It is a strange dance that we must all learn and getting into that rhythm with it makes life smoother.  This disease will take a prominent place in your world but it does not have to take over your world.

 

Every one of these “Gutsy Kids” is unique and so is how the disease dwells in their bodies.  By understanding the early signals, the warning signs, the disease pattern for your child, the options available medically, and having a medical team tuned-in to your child and their needs, you are then in a position of strength to help your child be what they want and need to be – happy and well.

Wishing you all the best on this journey,

Mary,

Parent of one Gutsy Kid with Ulcerative Colitis

Care Center – Texas Children’s Hospital

Mary’s daughter is treated at an ImproveCareNow center.

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