life on the safe side

 

It started with an email I received from a friend, dear E.  We got to know each other through our blogs five years ago.  And this weekend she wrote to me about her son and his diagnosis of Type 1 Diabetes.  I felt her pain and fear in the words she wrote, the camaraderie built of shared concern for our little ones.  Then these words, about the cliff we walk every day, "I think of that fine line between safe and unsafe often.  Sometimes living there, on that precipice is too much.  The knowing exactly how close the other side is can make you crazy.  But then I put up a wall and say this is how life is here, on the safe side, and it is fine."

It's a haunting image, one that is too exact in describing our life, to ignore.

Life on the safe side still has zoos, zoos with wonderful staff who meet you at the penguin exhibit because it's your first trip back after a very terrible day.  Your daughter wears pink princess gloves and worries her fingers over yours as she watches the penguins eat at their morning roll call.  The zoo employee gives your children stuffed penguins, one big and one small.  Trinidad is the zoo employee's name.  He makes small talk with your husband as you ask questions about the animals.  The safe side has penguins who torpedo into the water, their sleek bodies a study in aerodynamics.  After a time, Trinidad motions over to a wooden fence, opens a gate leading behind the penguin unit.  He introduces your family to John, the penguin keeper.  Everything smells like fish and your daughter asks you, "There aren't peanuts here, are there?"

You walk around the office, the kitchen, the small cavity behind the penguin habitat where nesting pairs of penguins sleep with their eggs (John says November, and you make a note to come back at that time).  You find out that these penguins have names like Margarita and Mojito, Rocky and Carmelita.  And there is a moment when you don't think about wiping a table down or whether or not someone has a granola bar hiding in their pocket.  This is when the safe side gives you a rare gift: John the penguin keeper reaches into the exhibit and comes back with a little penguin creature named Cortez.  Cortez is small, a juvenile penguin that John says is one of the gentlest he's ever come across.  He invites your daughter to pet Cortez and feel his feathers.  They are lighter than the softest spun cotton.

Our trip back to the zoo was scary.  It was really hard for Alice.  She was manic in her worry over what she might touch.  But so it goes with life on the safe side.  Sometimes you have to try to ignore the terrible danger outside of the door.

I can't say enough good things about the zoo.  They were wonderful.  A docent toured us through several exhibits.  Alice even got to see her precious elephants.  Trinidad gave us extra emergency numbers to keep on hand when we are there, should the unthinkable happen again.  We were more lucky than I can ever say - there is only one engine company that knows the zoo so well to be able to navigate the ten gate entrances, the three different addresses, the numerous turns and secret hideaways.  How lucky we were to happen to get that engine company.  They arrived in seven minutes.

You see miracles like that on the safe side, when you are looking for them.  Tender mercies that make your close calls evidence of a loving God.

You also feel kindness on the safe side.  People from the outer darkness who show up at the door of your small shelter with baskets of their carefully crafted love.  Names I want to just say here because without them I would have been so terribly alone: Alexa and Karen and Angela; women who jumped to our aid without a second thought.  The nurse at Children's Hospital that climbed up next to Alice in bed and held her hand while I went outside to call Chip.  The paramedic who came back to check on Alice a few hours after dropping her off.  Trinidad at the zoo, who spent far more time with our small family than I'm sure he had space for.  John the penguin keeper.  I've never seen a penguin hug a human being before.  He must be a very special person.  I haven't known how to say thank you and have it mean as much as I need.

And there are all of you dear dear people - those that we've known for years and others for mere weeks.  Those that we've never met.  People who have reached out to our family to offer support and love.  Thank you, thank you, thank you.  You have reminded me that I still have something to say in this space called The Creamery.

Life on the safe side can be isolating.  It can feel like you're hunkered down hiding beneath the table while a lifelong storm rages, threatening walls that are thin as tissue paper.  But sometimes the storm subsides and the sunlight streams through those paper walls, making everything golden.  Sometimes life on the safe side is more lovely because you know how precious it all is.

Here is a snapshot from the zoo last week, one I've carefully filed in my mind: Alice with her fingers tangled in Cortez's downy feathers.  Her face a poem of joy and vibrancy.  She's thrown back her head a little, mouth open, exclaiming to Chip, "I can't believe it!  I can't believe it!"

Sometimes I can't believe it: life on the safe side, as hard as it is, is also life on the sweet side. 

  

a letter to alice: of peanuts and elephants and brave friends

Dear Alice,

This letter to you is one so personal I feel like I'm scraping myself raw in the telling.  But in the last several days I haven't been able to shake the need to write it down, to capture it here for you so you'll know exactly the why and the how and the where.  Today you are five and a half.  You are precocious and smart and breathtakingly beautiful.  You are sensitive and kind and just a little bit devious (in the most delicious way).  You use words like fierce and extremely and amazing.  You rub your nose until there's a little line right above the snubby part.  Your eyes are the color of the ocean on our shores: sometimes a deep grey-blue and sometimes a translucent green.  You love to draw, collecting bits of color on your fingers and arms.  You are drawn to all things sparkly and shiny.  Today you are five and a half and the memories you form are only half-baked, roughly remembered snippets of things that actually happened swirled with images of things that never were to be. 

I write this letter to you because you won't always be five and a half.  One day you're going to look back on this memory and wonder what is real and what is colored by your five and a half year old self.

This is what happened.  We planned a trip to the zoo with friends.  Thursday night you were such a turd.  The honest truth: you were bratty and crabby and wanted to do everything except get ready for bed.  With your dad out of town on business, you pushed me until I was ready to break.  With one hand on your little brother, I stood at your bedroom door and told you we simply weren't going to the zoo tomorrow.  No way, no how.  I spit out the words--- you don't deserve a trip to the zoo.

I watched your face crumble and the tears fall.  "Please!  Please!  Please!  Please let me go to the zoo!  I promise to make better choices!"  As you stood there begging me, my resolve softened.  I told you we'd see how the rest of the evening went and we'd talk about it again at bedtime.  So it was.  You turned around, helped out, and by the time you were climbing into bed we made plans for the next day.

After all, I thought, we were meeting friends there.  We'd said we'd be there.  Friends had committed to packed lunches that didn't contain peanuts and tree nuts because of your allergies.

So the next morning we got dressed and ate breakfast.  While you and Max watched Curious George, I packed snacks and lunches.

The ride down was smooth.  We parked the car and put Max in the stroller, made our way to the entrance.  There was Alexa and her little boy Will.  We talked while waiting for Karen and her kids.  My phone rang - it was Angela, on her way with Wesley and Laurel.  They'd be late, so we should head in without them.  You were excited but so cold in the early Fall air.  I told you to jump up and down, shake your hands and arms.  Karen's boy David was there by then - he's your age and your good friend.  We walked into the zoo with the two of you out front, running toward the penguins.

Alexa and I let the little boys run around on the wooden walkway as our group slowly progressed by birds and gorillas, beautiful colobus monkeys with long fluffy white tails.  When he asked me about it, I assured David we'd see elephants, great big ones.  You jumped in at this point, "You get to see them WAY UP CLOSE!  They are GINORMOUS!"

You've always been one who loves to graze on snacks.  You hate to sit down to a big lunch, you want to grab your food in your hand and run.  So that's what we did: you walked with David until you'd circle back to me, asking for a new snack.  Goldfish, pretzels, apple slices.  By the time we reached the children's play area you had gone through three bags. 

In our family we've learned to say "safe" when we're talking about your allergies.  We wipe tables to make them safe.  We read ingredients and call companies to see what foods are safe.  We carry Epi-Pens to keep you safe.  We wash hands and watch with wary eyes to ensure that you are safe.  Happy and healthy are a close second and third--- our lives are about safe, it seems.  We do all of this to keep you from anaphylaxis, when your body senses that you've touched or ingested a peanut or tree nut protein and subsequently revolts, a flood of histamine causing your airways to swell shut until you stop breathing.

We have a zoo membership.  We've been there a dozen times without a single problem, bringing our lunch and steering clear of public eating areas.  We'd never before gone into the large indoor children's play area but I read the sign on the door - NO FOOD ALLOWED, and felt confident that you'd be alright.

And so it was, as you climbed indoor mountains and raced from one end of the building to the other with David.  I kept Max close in a smaller contained area for toddlers.  Angela joined us at this point, letting her two kids loose.  We breathed sighs of relief letting all of you blow off steam.

Overhead they announced music time - come get instruments to play along with the music piped through the sound system.  This was when I noticed that you weren't wearing shoes, your bare feet flashing white skin as you grabbed a music shaker.  I called to you, please get your shoes on, Alice.  Karen handed your shoes to you, and you sat down right there on the carpet to put them on.  That's when you told me that you couldn't do it - your fingers hurt.  It's the first time I looked at your hands and saw the swelling.  Your fingers were white and tight, the skin stretched to capacity.  Each finger was as fat as a breakfast sausage.  I remember thinking about hot dogs.

Here is your face: eyes screwed up in pain, head swiveling back to look at your friends.  And here is my mind: flashing in an instant, a neon red warning sign of danger.  This was edema, I thought.  Swelling of the tissues.  Fingers and hands, is it anywhere else?  What can we do?  I said a silent prayer.

I already had wipes in hand, scrubbing your fingers and hands, wiping up your arms.  I scrubbed your feet and toes, looking for the allergen and thinking, Maybe it's something I can see.  Of course it wasn't.

This was when you noticed my quiet concern, the rising note of panic in my voice as I asked you about your mouth, your face.  "Do you feel any tingling?  Can you swallow?  How does your throat feel?"  You started to cry a little, telling me that you felt funny.  My fingers, my hands, you said.  My mouth, too.

I knew what was happening but it was different than I'd imagined.  In my head, I had thought it would be a clear cut case.  You might be coughing and asking for my help.  Instead we sat on the carpet.  I pulled the Epi Pen from our bag and told you we needed to use it.  You cried now, real hard tears.  Your voice kept catching as you begged me no, to not do it.  I tried to be reassuring.  I told you it's what we'd trained for.  But it was hard for me to say the words.  I whispered, "Alice, this is important.  It's what we need to do."  By now Alexa was holding Max and keeping him calm.  Karen came up - she must have understood what was happening.  She said she'd hold you.  And that's what she did.  She wrapped you in her arms as tight as she could, holding you down, holding you snug.  You struggled and cried.  Karen kept telling you how brave you were, what a brave, brave girl.  I tried to move fast, raised the Epi-Pen in the air and slammed it down quick into your thigh with a small click.  Now the count of 10, slow through breaths and hands that could barely hold the injector: 1..... 2..... 3..... 4..... 5..... 6..... 7..... 8..... 9..... 10.....  As I pulled it out, Angela was there - asking what we needed.  "911," I said to her.  "Call 911." 

And Karen was still murmuring in your ear, our brave girl Alice. 

My fingers were shaking so much, I couldn't get the packets of Benedryl pills open.  This is the second step of dealing with an allergic reaction.  I remember saying another prayer that I could be calm for you, that I could be in charge.  I stabbed my fingers with the plastic pill packets over and over.  I called out to Alexa, "I might need you to open this, I can't get my fingers to work."  And then a stillness came, and with it the knowledge that I was surrounded with friends who cared about you, people who could help us through.

I talked quietly with you as you chewed the Benedryl tablets.  When I pulled you into my lap I tried not to cry.  A deep breath and questions about how you were doing.  Your breathing stayed steady as we waited for the ambulance.  I marked the time in my mind, making a mental note if we didn't see the ambulance in 10 minutes we'd need to Epi-Pen again.

And as I tried to keep you calm, I looked around at the concerned faces.  Angela moved outside to wait for the paramedics.  Karen took my keys from me and said they'd get our car home for us.  Alexa said she'd take Max home with her and Will, keep him for as long as needed.  I pulled things from our bag to hand over to these wonderful women and felt the load of worry lighten: my only concern was for you.  I remember thinking about how people must wonder why this doesn't look like something on TV or in movies.  With shaky voice you told Karen, "It didn't even hurt as much as I thought it would.  I'm proud of myself."

By then the paramedics were there, asking questions and bringing you oxygen.  They listened to your breathing, took blood pressure and other vitals, took notes on what I'd done.  There was a firefighter named Nick who pulled you into his lap there on the floor.  He gave you a sticker that matched his badge.  "There," he said, "now you're a firefighter just like me."  They told me we should take you in to the ER for further help.

As Nick carried you out the door, I looked back at Angela.  Tears streamed down her face and she grabbed my hand.  "I love you!" she said.

So it goes.  We rode in the ambulance, lights and sirens.  Your face was white and pinched, eyes wide in fear.  The paramedic gave you a white teddy bear to hold as she monitored your breathing which, thank God, remained steady and strong.

They kept you in the ER for five hours.  They gave you medicine and let you watch movies.  You drank apple juice and asked for gold fish.  The doctors complimented your yellow dress and pigtails, they wanted to talk with you.  You made them laugh.  They told you you were so brave and smart.

They told me I did exactly the right thing.  I acted fast and didn't hesitate.  They told me I stopped what could have been catastrophic anaphylaxis.

Your dad raced from Boise, Idaho to Seattle, Washington in a matter of hours - yelling at TSA agents and airline employees until he could be by your side.  He held you in his arms until both of you were gasping for air.

That night I held you so close, our cheeks touching.  I apologized that we never saw the elephants.  I promised I'd always do everything I could to keep you safe. 

I think about the fable of elephants-- giant, hulking, creatures who can be brought to their knees by a tiny mouse.  Mice can get into any space.  Creepy, too small to keep track of. 

Studies have been done to see if it's true, and the findings point to no.  However, elephants are cautious creatures.  Their gargantuan size belies their careful nature.  These creatures are Kings of the jungle with no natural enemies, but they don't take chances that they don't have to.

We are not elephants, though I am trying to teach you and Max about fear.  We can't be afraid of something so tiny as a peanut, something so innocuous as an almond.  Fear would have us locked in our house.  But we must be cautious.  We try to do what we can to be smart.  I think an elephant is like that.  No self-respecting one would walk into fire.  This is why we wipe every table, wash hands, ask about ingredients.  We speak carefully to friends and neighbors and strangers alike.  We ask about ingredients and never accept the easier answer if it isn't also the right one.

Alice, you are so brave.  You are so strong.  You sat in the ambulance and told me through tears how you didn't want to have this happen to you.  But never once did you scream or thrash out.  You are the bravest person I know, little girl.  And you're only five and a half.  The doctors told me how lucky we were that it wasn't more serious.  We acted quickly and decisively.  Good job, mom, is what they said.  And you'll never know the tears I cried when you couldn't see, how my heart broke over and over to watch your little body put up with so much.  You'll never know how frustrated I get with people who use words like paranoid and over-protective.  People who say these things are no big deal, you carry an Epi-Pen...aren't those supposed to take care of the problem?  I've told you we do these things to keep you safe.  What I've always known, and what Friday proves to me, is we do these things to keep you alive. 

We are headed back to the zoo tomorrow.  We are facing the fear - but you will be wearing gloves this time.  I've talked to you about always wearing your shoes in public places.  Your dad is going with us as bodyguard and moral support.  But we have no idea what happened.  We will probably never know what happened.  I can guess that you touched an allergen - a protein left behind by some child with a sticky hand, but we can't be sure.  In the end, the takeaway is this: vigilance, preparedness.  Try to be safe.  Let's be like elephants, tomorrow and every day. 

I love you more than air,
Your Mama