From the mother of a Crohn’s disease patient

In honor of Mother’s Day, here is a post from a very special mother. She has been by my side, all of these years, fighting for me as I tried to navigate this life living with Crohn’s disease. Mom, you are such an amazing, beautiful, godly, strong woman and I am so proud to call you my mother. I know I would not be the woman I am without your love and support. Happy Mother’s Day!

One of the greatest fears of a parent is to have something bad happen to their child. I remember watching some telltale signs of weakness in
Stephanie, knowing she was running to the bathroom, and feeling generally lousy. Was it a stomach virus, salmonella, even a parasite? One by one, these were ruled out by medical tests, while Stephanie was getting more tired, paler, and thinner.

Our family doctor wanted her to see a GI, and he ran more tests, while telling me ‘not to jump to conclusions’ when I asked if it could possibly be Crohn’s.
He wanted to try some oral meds, and wait for them to work, while Stephanie continued to get weaker, paler, thinner.

stephanie hughes crohn's disease sick hospital lost weight child kid duke stolen colon ostomy colitis blog family parents sistersUltimately, we wound up with the pediatric GI team at Duke Hospital, and a correct diagnosis was made and treatment begun. My 75 lb. Stephanie, now only 50 lb., would spend the next 25 days in the hospital, and the following year recovering. Mother’s Day 2000, I was happy to have my baby on the mend – even though she was full-faced from all the steroids, hair in complete disarray as so much had fallen out, and now new hair was coming in underneath, but she was alive!

Several Mother’s Days since have been spent at her bedside, or walking the floor praying for strength for her. Mother’s Day 2008, we proudly watched her graduate from UNC Chapel Hill, thankful she made it through, sometimes on sheer will and determination. Mother’s Day 2012 was celebrated at her home, as we tended to Stephanie, just home from the hospital after her Ileostomy. Mother’s Day 2014 – my baby is feeling great, in Italy on a second honeymoon with our wonderful Jarrod.

I may not know what tomorrow holds, but I know Who holds tomorrow. Happy Mother’s Day to all women who are, will be or have a mother.

20140511-080236.jpg

One thought on “From the mother of a Crohn’s disease patient

  1. Donna Luce

    Hi Stephanie, I read and saw many of your posts tonight, and being a mom myself, my heart went out to yours as I read of her angst over your illness. I so relate to you as I have an ileostomy and know what you’ve been thru, and I just want to say congratulations for all that you have accomplished…your videos, the Huffington Post story, and your determination to carry on and encourage others in finding solutions in what to wear. You are beautiful in more ways than one. Loved the sneak peek of Italy..a dream destination for me. Hope that will be in my future. God’s blessings! Donna Luce

    Reply

Sit down, stay a while. I'd love to hear from you.