Learning to love our labels

School is ending. In two weeks we’ll be in that time frame most parents secretly dread (or openly dread with panic stricken faces and a count down to school starting again… whatever girl I get it) where there is no structure, camps barely cover a work day and kids that are on perma-cation sleep schedules. With only half the summer covered by camps, a loose understanding of grandparents-filler time and some sitters on hold.. you’d think I’d really just be focusing my energy on those details, BUT…

I’m already day dreaming about next school year and casually thinking… oh no… we have to do that whole starting school thing again. I am NOT talking about back to school shopping- I’m not that OCD. I’m talking about the introduction to our heap of labels. Treacher Collins Syndrome, Bilateral Microtia Atresia, Bahas, Headbands, Teeny Tiny Batteries and detailed instructions, Bahas and water, Bahas and naps, Strabismus, and then… Divorce.  As I sit here and consider all that comes with our package deal… I hope and imagine this gets easier each school year.

Another notion or question is how does one casually mention amongst all of our labels that we just want to be thought of as “totally normal”. Or is that a pipedream? Will we ever just be Landon and family? Or will we always feel we need to explain it all?

Striving for normalcy and pretending we’re not high maintenance when we SO are is kind of a bizarre (ridiculous) juggling act. I pretty much sound like this to her teachers… “She has this incredibly rare syndrome but it’s SO not a big deal.  BUT it did affect her ears and hearing so she wears these hearing aids named BAHAS on her headband, They are totally not a big deal except with all forms of water. Oh by the way, can you learn to change the teeny batteries in these small devices with wildly finicky  battery doors that can fall off, oh and use the clip on her shirt. AND..Here is a two page instruction sheet …don’t worry. Oh and remember to put her hood up when it rains. And she’ll have surgeries later and to prepare for it we do need to miss some school for specialist appointments. Oh and BY THE WAY….can you make two copies of everything because we are divorced… but we get along pretty well” “WE ARE TOTALLY NORMAL, I SWEAR!” We SO put the high in high maintenance.

Then again these labels didn’t stick too fiercely last year, meaning once we’re a known entity… everyone seems to stop remembering we even come with labels. The school and teachers adjust, we sweetly get two cards in the mail, two instructions lists, two of most of everything. The teachers this past year diligently learned and then re-learned how the Bahas work and the best way to store them during nap or swim. They advocated for her with the school system for the best therapy. And the families are loving and warm. It’s just something that takes gearing up for. If you’re in my boat.. chances are you know what I’m talking about. It takes some practice, loads energy and is confusing to navigate since you seem to repeat the story for an entire month.

So as I continue to prepare myself for the chaos of summer, and steel myself for the early months of school, I will also remember to live and love in the moment. Be present and love these labels as this is a story I am infinitely proud to tell.

Wishing you love and patience in the coming months!

 

xoxo,

Eloise

 

 

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