Guest Post from Erika

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I recently started thinking about getting the Guest Blogging idea up and running again, and I knew instantly that Erika would be on my list of bloggers to approach.

Erika’s blog (Flight of our Hummingbird) was one of the great discoveries of last year. She is an extraordinarily gifted writer who can lure us into her world from the first sentence.

Even more extraordinary is her ability to keep drawing us back when her world is largely filled with vomit, mucus, hospital visits and the Kafkaesque dealings with insurance companies.

Erika’s daughter, Izzy, has Angelman Syndrome, and it is dealing with the consequences of this that dominates her blog.

But while there are times of heart-wrenching sadness, Erika and Izzy’s indomitable spirits keep bouncing back. No matter how mucus filled the long dark nights are, the next day, the sun always rises.

I could easily rabbit on for pages on why I love Erika’s writings, but I need to shut up and let you read for yourself.

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When we moved to Southern California two years ago, my daughter’s lease was expiring soon in my belly so we spent a couple weeks hunting for a place that would accommodate life with a newborn. We found an apartment complex in a small coastal town where palm trees, beach blond surfers and small fluffy dogs dominated the landscape. After some high-pitched oooh’s and aaawh’s evoked by my tummy and its tenant, Traci from the leasing office showed us one of the available apartments and pointed out its great features with convincing confidence. Upon leaving the place, she causally suggested that we check out the beach, which was practically in the backyard of the apartment complex. We were city-dwellers from a landlocked country who would never decline an opportunity to see an expanse of salt water, so off we went to see the ocean.

The path to the Pacific led through a perfectly groomed park and we were careful not to step on the bright green grass that grew at a right angle. We shortly arrived at another park on top of a knoll that looked over the cerulean waters that seamlessly blended into the cloudless sky. As I sucked in a longer-than-average breath in quiet awe, Phil and I looked at each other and we both knew that it was the perfect place for our baby. In my mind’s eye I saw my daughter sitting in her stroller happily babbling away while I pushed her around the park. A soft lyrical tune started playing in my head as I imagined her sitting and crawling in the lush grass surrounded by fellow babies and friendly spotty dogs. I imagined her first awkward steps taken in the safety of soft sand, and as the music got louder and faster-paced, I saw her running after the white waves and chasing those sly thievish seagulls on the beach while Phil and I smiled at each other in parental bliss.

My lyrically underscored dream was reminiscent of advertisements that try to sell us a certain feeling and exploit our deep, inherent desire to belong to a tribe. You want to be a member of a tribe where you ‘just do it’, or ‘think outside the box’ or where you are a ‘rebel by choice’- or just simply a parent of a happy healthy baby who incidentally wears Pampers. When you get pregnant you become a candidate to join the mommy tribe and you have nine months to learn its language, customs and laws. You have nine months to learn to navigate the world of Diaper Genies, sippy cups and Boppy pillows before you acquire the tribal mark on the day of your initiation.

But what if your day of initiation does not end with the postpartum idyll depicted in life insurance and diapers commercials? It’s hard to feel like a full member of the mommy tribe when your baby is locked up in a hospital and you stroll around in your lonesome for weeks or months. It’s hard to believe that you have full membership when you are not only unable to breastfeed but you can’t even commit the ultimate mommy crime of bottle-feeding because your baby gets her nutrition through a tube. You wear all the tribal marks, you display the typical tribal behaviors, you carry around a perfectly gorgeous baby, all of which trigger happy recognition in your fellow tribe members, but you know deep down that you are a whale among the fish, a tomato on the vegetable stand.

I used to feel the need to come clean and tell these starry-eyed strangers about my daughter’s disability but now I just go along with the secret winks and handshakes pretending that there is no chasm lying between us. Not because I’m in denial, I just don’t feel like watching how comradery evaporates from their eyes and get replaced by distance or pity. I’m a member of a different tribe, a tribe that nobody wants to be a part of voluntarily, a tribe that you don’t join by choice. But once you are in, you find that it’s a group of tenacious fighters, valiant warriors and indomitable spirits. The tribal marks that draw my eyes include wheelchairs, walkers, feeding tubes, trachs and various other medical equipment.

The crispy green park and the soft sandy beach is still the perfect place for my daughter, even if the film frames of my dream are moving in slow motion. I’m still in the first part where I keep pushing the stroller around the park, almost in a Bill-Murray-in-Groundhog-Day fashion. The part in which my daughter sits and crawls in the lush green grass is many frames away, and the step-taking part is even farther. I have high hopes that the wave-chasing seagull-harassing bit is also on the reel, because I have every intention to watch her awkwardly run around while I smile at Phil in parental bliss to the sound of music.

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Do leave a comment, pop over to Erika’s Blog, have a root around her posts, say hi and add her to your favourites.
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