Marauder’s Map

A few months ago, Mike and I went to dinner at the neighborhood brewery with Luella (if you live in Bellingham, you’ll understand that’s not an odd occurrence).  A father and his adult son stopped us on our way in to inquire about Luella, who still had her nasal feeding tube.   After a few minutes of chatting, the father shared that his son had also had health problems as a baby and was soon afterwards diagnosed with cerebral palsy.

“And now look,” his son said.  “I’m out drinking beer!”

It was hilarious, unexpected, and, even upon recall, hugely uplifting.

Luella has a new feeding tube now.  This one isn’t taped to her face, but is hidden underneath her clothes.  With her lazy eye also having been fixed, her health issues are much less visible.

The general consensus was that this would be good: if people don’t KNOW Luella has medical and developmental challenges, we won’t have to talk about it.

But you know what?  Sometimes I miss it.  

We rarely have interactions anymore like the one at the brewery, where we discover a hidden bond with another family.  And anyway, I never really thought that Luella having a visible disability was a bad thing; I’m proud of who she is and I’m pretty okay with the “HEY INTERNETS, HERE WE ARE, NOTHING TO HIDE,” way of doing things.

Bath time

Now, we do a lot of…pretending.

Well-intending servers automatically set out a highchair for her at restaurants (she can’t sit up on her own) and give her sippy cups of water (she doesn’t eat or drink orally nor does she use her arms/hands much).  People ask if she’s starting to crawl/walk/talk (no/no/not really) and if she made it through the winter without getting sick  (HAHAHAHA).

Generally speaking, my annoyance is at the eye-roll level, although I reserve the right to be really ticked off.  Because when I look at the world through my new Luella lens, what I see is a lack of acknowledgement that people with disabilities exist.  That disability is the exception, not part of the “norm”.

Luella Pepper Sisters

In all honesty, I’m not pretending that much anymore.  I’m quite fine telling people, “No, she isn’t crawling, she has developmental delays,” and leaving it there.  I’m not intending to make anyone feel foolish, although that is probably sometimes the result.

In 20 years, maybe Luella and I will be able to go out for a beer together. Maybe not.

What I do know is that I’m not going to feel obligated to hide in a cloak of invisibility.

We’re proud.  We’re different.  We’re good.

Health Update: Luella is in a real sweet spot right now! She loves music, snuggles, and listening to us talk to her.  She give enormous smiles when she hears certain jokes and songs or sees her favorite toys.  She’s learning to make new noises and has recently discovered that her voice can be both soft and LOUD.  

Despite this blog post, we are pleased with the surgeries.  The new feeding tube is much easier to manage and has reduced her reflux.  Her vision has improved, although she may still be prescribed glasses soon.  She is weaning off one of her seizure medications that isn’t prescribed to children beyond 1 year of age, so we are keeping an extra eye on her for any changes but all is well so far!