Dreaming of a 'normal' summer vacation

Written by: Julianne Neely

Everyone needs a vacation, especially special needs kids (and their parents).
Sometimes I want a break from being ALL. THE. THINGS. 
The home nurse, the fierce advocate, the educator, the researcher of everything related to X medical condition, the "don't you dare come in our hospital room ever again and I want to talk to your supervisor NOW" quality control specialist, the accountant, the medical supply manager, the parent/child visit supervisor, the guy at the bottom of the totem pole who gives all the updates to the DCFS people who can't seem to update one another even though they work in the same dang office, and of course, the mom. 
On this vacation, I just wanted to focus on being a mom and enjoying that role. 
I wanted to go away, dress the kids in their adorable patriotic outfits, watch some fireworks, snuggle and pretend life was normal. 
But it's not normal and we can't seem to fade into the background, ever. On our first day, when I walked into the cafe to get our morning coffee with baby in the carrier and the feeding tube making its obvious appearance beside him, every single person I walked by stopped to stare. Not exaggerating, either—you would have thought I had forgotten to put pants on.
I stared back (because grown-ups shouldn't get away with staring), and every other person tried to cover up their rudeness with a, "They are so cute, are they twins?" comment. 
(Really? Because you clearly didn't even really see them under their feeding tubes or you would have noticed that there is a clear age gap.)
It all felt so intense. And coming from a week and a half with an intense hospitalization and non-stop focus on this little baby, we all just needed a break from the "something is wrong" spotlight. 
So I worked extra hard to make it all feel normal, because if I can't feel like "just a mom," I at least want each of them to feel like "just a kid" for a few short days on the beach. 
And I have to say, these kids rock at childhood. Perhaps it's because they know what it's like to be confined to the walls of a hospital room for days and days on end, but they find joy in each and every thing. They soak in the sunshine, the sand, the wagon rides, and the water so purposefully and intentionally. They explore and thrive. 
They don't even notice the stares or the comments, they just enjoy each moment. Which reminds me: I can choose that, too. 
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Posted on May 16, 2016 at 8:08 AM