• ERIC BUTLER

"Look ma no hands"

Updated: Feb 20

This is how I feel as a parent. I had no idea what I was doing 16.9 years ago when my swollen 9 lb 11 oz baby boy showed up and I still have no idea today. Of course the situation is different. That beautiful, loving, friendly, happy little boy became a teenager who has a Doctorate in any and every subject known to man. It's amazing how much information I apparently lost after my teen years. More importantly that little boy developed a pretty crappy disease along the way, Crohns (& colitis). See what I did there?



God forbid he only had one, he needed both to complete the set. The most amazing thing is how his body reacts to every treatment. Nothing works like it's supposed to. He rarely has a normal reaction to the meds and his body almost always does the opposite of what is expected. We hope he'll get more stable once he finishes growing but we won't know until we get there.


But through this all I can tell you how impressed and proud I am as a parent. Don't get me wrong, there are days I want to burn it all down, it can get frustrating dealing with an ill teenager. But when you pull back and actually look, it's quite impressive to see how mature and brave this almost 17 year old boy [man?] has been over the last 5 or so years. He faces endless intrusive tests that many adults I know refuse to take. He does it with a joke on his lips and his dimple on full display. He is polite, friendly, and helpful to the army of medical staff he is marched in front of on an almost weekly basis. He faces his pain and discomfort with a stoic attitude to make Zeno proud.


Most of the time if I include a story about the family, it will be a silly "you won't believe what happened" kind of thing, but my son's illness will come up from time to time. Especially when I can get on here and let the world know, we did it. "We finally found the magic 'pill' that worked for him. He's more consistently well than unwell." But until that day we will move slowly forward, patiently searching for that "thing" to help him get better. Fingers crossed that day gets here soon.

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