A Mother’s Guilt

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Since the beginning it’s always been about my mother’s guilt. Doesn’t matter that I did not cause this disease, despite what the pediatrician tried to tell me. Doesn’t matter it was the medical profession that ordered those horrid tests on an infant. Didn’t matter what the mind said. My guilt over the air barium enema xray at two years old with no sedation, my guilt over the Golytle at two and three and ten years old –the medically sanctioned child abuse was scarring my daughter. It only mattered that I had to follow orders and watch my child hurt, and I felt guilty for being the cause. I prayed to God and Mary to let me have this disease, to take this away from an innocent child who didn’t deserve to suffer so, I would not complain if only my baby could be healthy.

Soon after birth our daughter Claire had bowel issues: the frequency, consistency, rotten gas, horrible diaper rashes that would appear out of nowhere looking like her soft baby’s butt was skidded on rough cement and eventually, the blood. Up through our daughter’s 2nd birthday, the pediatrician blamed her symptoms on me–calling me a nervous new mother- if only I would relax, all would be well. By the time she was 2 ½ I stood my ground and said there is something very wrong and it’s not me. How could a 10-pound baby at birth barely weight in at 20 pounds at age 30 months?

The first 3 years of diagnosis were one solid relapse, TPN and a temporary ostomy were being discussed. Somehow through prayers and an excellent pediatric GI age 5 brought her first remission. Gaining any weight and a reaction to her meds required adjustments to maintenance therapy but by and large, life was OK. Until the other shoe dropped, you know, the one you always anticipate because you never forget how bad things can be? The end of 4th grade brought a pretty big relapse. The pediatric GI decided to do a routine surveillance colonoscopy to stay on top of things. The visual results were as predicted: the colon was pretty rotten after 8 years of severe disease and she eventually would need a colectomy. Who knew the eventually was only days away. The pathology report that followed altered our daughter’s body and her life forever. Two sections of colon were found to have moder ate-grade dysplasia and the recommendation was a total colectomy.

OMG, the mother’s guilt was back with vengeance. How could I allow my only child to be filleted and gutted? What would her quality of life be? Was this really the right thing to do? The year was 1998 and we had the internet so off I went in search of answers, in search of support, to finally find someone out there who could help. I landed on a website and discovered an entire folder full of parents with children that had IBD. In time I made it over to a folder with patients kevetching about the lack of a ‘Jerry Lewis’ for this disease. IBD had no big name spokesperson that made it OK to talk poop and blood, nobody who could fundraise like Michael J. Fox, and the worst, no real sup port mechanism. After much moanin’ and groanin’, people knew in order to have the right to complain, it came with the responsibility to do something. And thus, the IBD Quilt Project was conceived.

Like any corporation, it needed money to do its job of giving support and creating awareness for IBD. One person in the group was fearless, he said “don’t worry about it, I’ll ride my bike somewhere and people will give money.” And poof, like a fairy godmother waiving a magic wand, GET YOUR GUTS IN GEAR was born. This is the short version and if you want a history lesson on GYIGIG, feel free to email me, I love to share!

In 2004, the first official Get Your Guts in Gear 3-day ride for Crohn’s and colitis took off from Manhattan. Never having participated in a large scale sporting event before, I was very nervous. But, at that first opening ceremony on Pier 42 I could feel the excitement build like a drum roll and with all the energy being generated my nervousness vanished. With every rider we helped up a hill, every meal we shared together, the nights of camping in tents, I found myself really getting into the spirit of what was happening. It was hard work but I was having too much fun to even call home. Three days later at the closing ceremony in Saratoga Springs, there was much hugging, crying and laughing with people who only 3 days earlier were total strangers and a community formed. And I knew I found my control over this disease which had ravaged my daughter, I felt like I was stopping the helplessness — I felt empowered.

Today, I continue to maintain my connection to this community. Some years circumstances prevent me from being as involved as I would like, other years I actually get to be on one, two and occasionally all three rides. WooHoo! But times in between, the friends and the community continues to offer love, support, empowerment, education and so much more. You can take what you need to get through the rough times, give back when you can and the community is always there. The best part for me, is watching someone new come into the community and stretch beyond their comfort zone and achieve by volunteering, crewing, riding and supporting to regain and conquer what this disease tried to take.

Update of our personal history: Within a month of that first ride in 2004 my mother was diagnosed with Crohn’s disease at the age of 63. I am a self-diagnosed IBS sufferer. Today my daughter Claire is 23 years old.  Post colectomy, she suffered for another 7 long years with chronic pouchitis and symptoms as bad or worse than the actual pancolitis. Thanks to new therapies and much patience and a bit of luck, she is med free for the first time in her life. However, a permanent ostomy lurks in her future and I know this community will be there when we need help with the next chapter. 5/2011

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