2013-05-15 14:23:43 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.
Something happened in my own home recently that made me know, really know, that I was onto something with my 10 commandments for compassionate disability awareness - particularly No. 4 (Teach your children to ask you questions if they have them).
Last week, I took Jane to a park for lunch and a play date with my dear friend Beth and her kids. Jane, her new friend Cecelia, Beth and I ate some lunch and the girls attacked the playground. Beth got geared up to feed her baby boy, Ethan, via a G-tube.
Before we got to the park, I had explained to Jane that Ethan eats his formula through a tube right into his belly until his doctors can fix his tongue and he can eat everything with his mouth.
I figured she'd be fine with it as she practically has her M.D. from accompanying Baby Jude to all kinds of appointments and helping with his home therapies. But to be safe, I gave her a quick prep.
As Beth was starting the feed for Ethan, Jane spotted her from across the park. She came bounding over Jane style - all kinds of energy and excitement - and then clams up as she gets closer. She stood real close to me, just watching Beth feed Ethan, not making a peep. She was interested, but not rude. (Thank God, it totally could have gone either way!)
She observed for a few minutes, whispered a few questions and then CeCe called her back to the swings. Phew - Jane didn't throw out a "Janey Bug-ism." Close call. But she did great.
We finished our play date, picked up Baby Jude from Summit DD and went home to a normal afternoon/evening. Jane made herself an outside home to celebrate her fun day.
She grabbed a couple of pillow pets, some blankets, many stuffed animal friends, her microphone and stand (loudest, most fun gift ever). With her fav baby doll in tow, who she named Ellen, Jane built her party home in the driveway - with a wheelbarrow as the backdrop.
Jane cradled her baby doll and I heard her say, "OK, Ellen, it's time to feed you." She feeds, diapers, strolls around all creatures and dolls great and small as a favorite pastime.
I noticed she didn't have a toy bottle for this feeding. But she did have a tall microphone stand and a "bottle" with a long "tube" in the microphone. So Jane went about her business of opening Ellen's PJ's and attaching the end of that microphone's tube.
I asked what she was up to. Jane told me she was feeding her baby milk though her belly tube. I pushed her a little and asked why her baby eats through her belly.
Jane looked at me like I was the biggest numbskull ever. Her answer? "Because God made the baby that way, silly. Now don't touch the tube. My baby is hungry."
Wow! I guess Jane paid closer attention than I thought to Beth and Ethan and their mealtime routine.
The most awesome part was that she was curious, compassionate, and she learned from asking a few questions. Then she brought those lessons home.
So, even when I hear from friends and strangers alike that my words have meant something to them, or Baby Jude has inspired them or they voted yes on the Summit DD levy, I still doubt if any of my spouting off about all of this stuff really makes a difference.
Am I walking the walk not just talking the talk in my own life? Am I raising my kids to be No. 4? Will they be compassionate to differences in people? Will Jane always be the strong, protective, loving sibling Baby Jude will need long after I am gone? Will Baby Jude remember to never give up?
Of course, I wonder if I am doing a good enough job.
But as we cleaned up Jane's driveway house and settled in for movie night, with baby doll Ellen snuggled up with us, attached to her makeshift G-tube, I sighed in relief. I knew for a fact that I had accomplished No. 4.
I am proud of Jane for asking questions, accepting the honest answers and living them out in a compassionate, thoughtful way. And I am proud of me too. I got No. 4 right. And that ain't half bad.
Grateful, Prayerful & Hopeful.
Read more about Baby Jude in the rest of Sarah's blog posts.
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