My child has Eosinophilic Esophagitis. Now what?

Today, I started making dinner at 2:30 p.m. I can smell the blackened, Caribbean chicken cooking in the oven. On the stove sits the quinoa and steamed veggies. A month ago, I would have waited until the last minute and thrown some frozen meatballs in the oven and pasta in a pot. Now, it’s not that easy.

Three weeks ago, Em was diagnosed with Eosinophilic Esophagitis and prescribed a 6-food elimination diet. She can no longer eat:

soy
dairy
gluten
eggs
tree nuts/peanuts
fish/seafood

Yes, there is still stuff she can eat. No, it doesn’t leave much. It’s been a steep learning curve for me and I’m still trying to get a handle on it. The day she was diagnosed, I went to three different grocery stores and spent two hours reading the ingredients of the things she liked to eat. I came home with two bags – mostly filled with produce and meat. The experience was enlightening and discouraging. I knew there was stuff she could eat, but I realized how many products have soy and gluten in them.

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Em before her scope. She rocked it.

According to gikids.ca, Eosinophilic Esophigitis (EoE) is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of white blood cells called eosinophils. Eosinophils play a role in allergic reactions and are prominent in other diseases associated with allergies such as asthma. . .and eczema. (medicinenet“Unlike food anaphylaxis – the acute allergic reaction – these patients have chronic activation of the adaptive immune system” says Dr. Marc Rothenberg, director of the  Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s Hospital. Essentially, something Em has been eating has triggered the production of eosinophils, which has caused inflammation in her esophagus. EoE presents differently in adults/young adults and children. Em’s symptoms include poor weight gain, gastro issues, abdominal pain, and strong food aversions. Those symptoms, coupled with her severe eczema, prompted her gastroenterologist to scope her in June. The biopsies indicated EoE.

The diet was prescribed to eliminate all the top food allergens in the hopes that the whatever is triggering the production of eosinophils is no longer injested. Eventually, we will reintroduce these foods, one at a time, and assess her reaction.
We’ve had mixed results.
Good News: Within the first week of being on the new diet, Em’s abdominal pain and gastro issues disappeared.
Bad News: Unfortunately, her eczema persists and she’s actually lost more weight. At almost 3 and half years, she is under 10 kilos (22 lbs). While it’s normal to lose weight after a major change in diet, she doesn’t have any to lose, which is cause for concern.

Meatballs

Egg-free, gluten-free, soy-free meatballs!

Every day, I learn more and my cooking has improved! Although the rest of us are not restricting our diets when we’re out, our house is free of soy, eggs, dairy, gluten, nuts, and fish. Em can eat anything here.

Chances are, I’ll be blogging about our journey often. In the meantime, wish us luck! We’ve been waiting for a diagnosis since Em was 9 months old. Though we are beyond relieved to get one, it will be a big adjustment.

Solitude and the art of being.

As I sit in the screen-in porch at my dad’s house, I realize that I am completely alone. The only other heartbeats around me belong to the hearts of birds and chipmunks, those wild turkeys that eat the birdseed that the squirrels knock to the ground from the birdfeeder, and innumerable other little creatures in the trees, grass, air, and cracks in the stone. But no people. I am the only one.

The wind picks up and rustles the trees. It’s a bit chilly for July. I think it might be raining, but I can hardly tell through the screen – maybe just a misting.10483631_10150406924284995_207213603067644352_n

Solitude.

I can’t remember the last time I was this alone. I’m never this alone in the suburbs – we share a wall with the neighbours. People drive by in their cars and on their bikes. They walk past our house on the way to school, or to catch the train. They are just always there.

This solitude is comforting and has given me time to reflect. It struck me today that I’ve lost the art of being. At some point, I became a doer – always thinking about what’s next, where I need to be, who I need to talk to, feed, bathe, put to bed, email, text back, call (gasp!), make dinner for, buy coffee from, get to an appointment with… so many tasks.

As I sit here, I am trying to just let myself write and push away thoughts about when I’m going to head back home and what route I’ll take – where I will stop for coffee and whether I’ll need gas before I get home. I’m trying not to think about rushing home to relieve the caregiver of my kids. I need this time. This solitude. This moment – for me, to be me, to just be.

I’m Still Standing…

“How are you still standing?” She said to me as we talked about my day. “I’d be a puddle of tears if I’d had to deal with half the stuff you do.” she said. I shrugged. “I don’t have a choice” I replied. “Besides, it’s my normal. I’m used to it.”

The truth is, though, that I often do want to dissolve into a puddle on the floor, or rock myself while clutching my knees against my chest, or not leave the house because the thought of getting ready seems like too much to bear.

But I resist. I carry on with my day, moment by moment, adjusting to every new curve ball life throws our way. I’ve mastered the art of catching them bare-handed before they break a window, or hit someone in the head. I wish I had a bat to hit them out of the park, but instead I just collect them, waiting for the pitcher to tire.

Our little family has endured a lot in the past 4 years – more than the average family of four, though every one has its trials. We’re dealing with medical issues, testing, treatments, side effects, uncertainty, and the death of a family member… and that is just in the past three months. It’s been difficult and trying, but we have a good support system.

An average month sees me at a doctor’s office, lab, or hospital about six times – for me and the kids. We’re starting to finally get some answers to some questions, so that might slow down in the coming months.

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It’s busy. I’m busy. It’s stressful and I’m stressed. But, I’m still standing. Because I have to and I need to and I want to. I manage, and in spite of all the stress and upheaval in our lives, I’m happy.

I have figured out how to cope – my therapy comes in the form of drives in the country and moments of solitude by the water. Nature grounds me and gives me peace. I focus on moments so I can live my life, instead of having it consume me. I revel in the beauty and find the joy in the moment – the smell of the flowers, the lapping of the waves, the wind rustling fresh leaves, Em’s shrieks of delight at discovering fish in a tank (even though I didn’t share in her delight). Life is made in moments – and my joyful moments far outweigh my heavy ones

Here’s to joyful moments…

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Sarah, loosely defined.

All week, I’ve been agonizing over writing a bio. Everything I’ve read recommends starting a bio with your name and what you do – as in “Sarah is a ______.” I gots nothing. What the heck am I? The only single word that describes me is “mother” and not only is that not totally relevant to the bio I’m trying to write, it doesn’t reflect what I have to offer.picture270

So, where does that leave me?

I’ve never really had a professional title – a single word to sum up my education and experience – like teacher, or doctor, or accountant. “What do you do?” has always been met with an awkward silence.

For years, I was a trainer. I stood in front of rooms full of people and taught content that, in many cases, I had researched and developed. That doesn’t make me a teacher, though. Not in a traditional sense.

I’ve grown into the title of writer. It is what I do – what I love to do and, in some capacity, how I’ve been making a living for five years. Can I can claim the title “writer” if I am not published? What do I need to do to call myself a writer? I’m not sure.

I also love editing. Though the only editing I’ve done in recent years has been of my own work, I did edit a book once. It was a book published by a place I used to work. It had chapters for which I wrote introductions and conclusions, and each chapter contained interviews that I transcribed and edited. Aside from proofreading and cover art, the entire thing was me – even the interview skills training that led up to the interview sessions. Does that make me an editor? I don’t think so.

An interesting thing happened tonight; I got a call asking if I could deliver a lecture at a local university (on two days’ notice). The thought of delivering a lecture was equal parts exhilarating and terrifying. While I was waiting for more details, my mind raced – I imagined myself in that lecture hall and I was ready to stand up there on a moment’s notice and see where it took me. Unfortunately, the opportunity fell through before I had a chance to pick out an outfit. I was really disappointed and it got me thinking about what I want to be doing and what I am qualified to say I am.

You can see my dilemma. Maybe I’m a jack of all trades and a master of none. Too bad I can’t put that in my bio: Sarah is a jack of all trades and a master of none. She is a teacher, but not in the traditional sense; a writer, loosely defined; and she edited that one book that one time. Sarah lives in the Toronto suburbs with her husband (also loosely defined) and their two children.

Send it to print! We have a winner!

Not so much…

 

 

My Online Presence: A Carefully Crafted Illusion.

An interesting thing has happened over the 20 years that I’ve been living online and interacting with strangers behind keyboards (most of whom were anonymous until about 8 years ago). I’d like to call it judgment, but that doesn’t seem strong enough; people regularly get eviscerated for saying something online that doesn’t fall in line with what other people believe to be right or good.

1-coffee

Not long ago, I tweeted this while someone who follows me was tweeting about cancer. Her response to my tweet was along the lines of: Aren’t you lucky that that’s all you have to worry about. Your coffee spilled. What a tragedy. At the time, I made light of it because 1) that’s what I do 2) she was obviously going through something.

But, here’s the thing: just because I’m lamenting over spilled coffee, or sharing a funny anecdote about my kids, doesn’t mean my life is all rainbows and butterflies. Is cancer a reality in my life right now? Yes. Am I dealing with the health issues of loved ones? Yes. My kids, included. I struggle and I stress and I feel sad and lonely and angry and frustrated – sometimes all in the same moment. Sometimes, for many moments. Too many moments.

Who I am in public is all me, but it’s not all of me. It reflects me, but it doesn’t encompass who I am.

There is a lot that I don’t share online, for a variety of reasons. Years ago, I decided that I want my online presence to be positive – I want it be supportive and funny and, if possible, thought-provoking. I want it to be something I do to escape the trials of my life. It reflects the best of my life and I’m alright with that. You might call that inauthentic. I call it self-preservation.

I enjoy a good online discussion, which is why I post articles, videos and images that might generate those discussions on Facebook, where people know me. There was a time when I’d invite myself into such debates in public forums, like Twitter, and engage trolls, but I discovered that all it did was bring me down and affect my mood. I don’t believe it’s ever been terribly effective, anyway; to my knowledge, I have never changed the mind of an argumentative stranger behind a keyboard. I save that for people in my physical space – people I see face-to-face, strangers and loved ones alike.

Don’t assume that just because people aren’t talking about something online that they aren’t living it, thinking about it, or talking about it offline. People are living their lives and only sharing aspects of it – they participate in debates to the extent to which they are comfortable, or not at all. And that is alright. The people who aren’t talking about certain things may be the ones who are actually affected the most.

What aspects of your life do you share online?
Are you more likely to vent online or create the illusion of rainbows and butterflies?