MRI = Normal, Weekend = Not Normal

N’s MRI is normal. [sigh.] It’s a good thing that it’s normal. Bad thing that it’s yet another thing that’s not fixable.

I got a call from the nurse on Friday with this information. In light of this news, I’ve been pondering next steps all weekend long. N’s been having intense and intermittent bouts of pain the last couple of days. I feel stuck and helpless as his mother. The more we keep chasing N’s problems the less I feel like we’re giving M a normal childhood. In fact, we almost drove past church Sunday morning and straight to the ER all dressed up cause N was having such a fit. Then we opened his diaper, let a nice cool breeze rush in, he peed, and then proceeded to sleep through the whole service.

But we did do something fun this weekend…at the hospital. (Who hangs out at the hospital for fun? We are so not a normal family anymore.) We went to N’s NICU reunion at Dell. M had a blast with all of the kid activities and thought it was pretty cool to climb in and out of an ambulance.


It was good for me to see two of my very favorite doctors. When explaining to one of them N’s bowel/bladder problems and all the crazy screaming one said, “I remember him like that in the NICU. I remember because I’ve never seen anything like it before.” That was very affirming to me. I don’t remember the pain ever being as bad as it is now but he remembered something significant. Said it sounds autonomic to him. Yet another thing for me to research.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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