2011-06-08 14:47:22 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.
OK, folks, here it gets gross. Not a “presentable” conversation as far as I was raised. However, it is the poor kid’s reality. Baby Jude rarely poops. When he does, it is an awful experience. And according to lots of people wearing badges that read MD, chronic constipation is incredibly common with cerebral palsy. It can be common. It can be remedied (2 new meds as of yesterday). Fingers crossed, no surgery (still waiting on that radiology read).
No explanation why this diagnosis hit home so hard. Except, maybe it’s because pooping is supposed to come naturally. Organically. When the boy you love with your entire being is diagnosed with something that currently is not natural, not organic and is chronic - that sucks!
That is the word that got me - chronic. Baby Jude isn’t tragic. He isn’t terminal. Thank God. But he is chronic. He may chronically have challenges that you and I wouldn’t dream of. He may forever have difficulty pooping. Because of cerebral palsy, and because of things we can't change, didn’t cause, fix for him, or make better.
Where I have fallen short is that I failed to notice how bad his digestion is for him. The fact that he isn’t moving the food out of his belly might be part of the reason that he doesn’t welcome new bites of food into that belly. I failed. It happens. Every parent fails.
The best part of Baby Jude is that he never fails to remind me of how happy he is, how he doesn’t know any better, how hard we are all working. HE never fails.
Grateful, prayerful & hopeful.
Read more about Baby Jude and Jane from the rest of Sarah’s blog, Hey Jude!.
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