Cookies for England

Cookies for England

“Up where the smoke is all billered and curled
‘Tween pavement and stars is the chimney sweep world.
When there’s hardly no day, nor hardly no night–
There’s things half in shadow and halfway in light.”

 

I can still remember where I was, three years ago, when I decided to start a blog.  I had just given birth to my daughter (a daughter who would be special needs and challenge everything I thought I knew, though I did not yet know it at the time).  I was able to take a rare trip to the grocery story by myself, and I pulled into the parking lot, my mind racing. “What if she needs to nurse while I’m gone?  What if she won’t take the bottle?  What if we can’t figure out why she cries all the time?  What if I can’t check out and get back home in 1/2 hour and she’s screaming?  What if what if what if whatifwhatifwhatifwhatifffff . . .”

I turned off the car and just sat there for a moment.  I listened to the silence. I savored it.  I had almost forgotten what it sounded like to have quiet, with the screams of my baby almost always ringing in my ears.  I sat there, listening to myself breathe . . . to those quiet, soft settlings of the car as it rested.  It was bizarre.

And right there I said, “I need something for myself.  I need something to do, even if it’s just for 5 minutes a day, for myself. I need to remember the Emilie who used to love to write.  I need to reach down in there and find the girl who loved to create and make beautiful things.  I need to see if she still exists. I need to see if I even remember what she enjoyed doing.”

Hmm.  What did she enjoy doing?  I sat there, scrunching up my face in concentration.  I honestly couldn’t remember the last time I did something that wasn’t related to survival.  “Quick.  Eat this crust so you can survive to fight another day. Grab an hour or two of sleep so you can get up when she’s screaming through the night.  Prep 5 meals so your other child will have food when you’re so weary you can’t keep your eyes open.  Do the laundry now, before you collapse from exhaustion, so that you’ll have clean clothes tomorrow when she goes through her customary 5-6 outfits.  Do this do this do this dothisdothisdothissssss . . .”

Emilie. What does Emilie enjoy doing?

I drew a blank.  I started blinking back tears, right there in the car, because I realized that Emilie hadn’t enjoyed doing anything for quite some time.  And I couldn’t even remember what she used to enjoy. I looked down at my hands, my clothes.  I looked in the mirror at my face– the lines forming around the eyes– the gray beginning to tinge the sides of my hair.  The tired, weary gaze.  And I realized I didn’t even know this person staring back at me.

I tried to remember myself before.  I remembered a girl who loved to read– who devoured sometimes a novel a day, just from sheer delight in the written word. I remembered a girl who used to scribble poems on her notebooks and keep a journal that she concealed oh-so-carefully with a hidden hair on top, so that she would know if anyone trespassed and read her secret thoughts.  I remember loving being in the solitude of the outdoors– the fresh air blowing my hair while I traipsed through the countryside, my camera in tow, almost weeping from the loveliness of the sweeping purple mountains or the millions of wildflowers bowing in homage to them in the valley below.  I stood in a quiet barn while a lamb was born, and then sat, almost afraid to breathe, at the first, intimate moment of the mother’s discovery of her new baby . . . the flurry of licking as she accepted it and immediately did what all mothers do– “Come over here and let me wash your face!”

What had happened to that girl.

My life now consisted of purchasing special medical baby formula that wouldn’t (usually) irritate my baby’s tummy.  Until it did.  Until she projectile vomited all over me right before I was set to go meet someone or have a meeting.  Until I decided whether I should waste a precious few ounces in the car, now, or if she would refuse it, causing me to have to throw it out, and possibly run out because we were on the road.

Until I sat across from therapists, specialists, surgeons, counselors, dietitians, family and friends who were seemingly in equal numbers of supportive, judgmental, or caring yet ignorant, through no fault of their own.  I went through feeding therapy, physical therapy, speech therapy, occupational therapy.  I worked for 1/2 an hour trying to get Noelle to eat a single Cheerio.  Until I wept when she finally accepted it.

Until I had to somehow come up with a special Autism bed to keep her safe at night, when the cheapest one on the market was $7,000.  Until I had to have the 3 foods that she would sometimes eat, around me at all times, because she could (would, and did) stop eating, period, until those foods were provided, cut up into identical pieces.  Until she was hospitalized at one point, because she just stopped drinking for almost 4 days, with no explanation.  Until I was sitting across from the food manager at her school who stared at me blankly, yet caringly, while I described that “She only eats these foods, and only cut up into triangles, not squares.  And if she won’t eat them then try a red spoon– she loves red.  Sometimes massaging her legs with deep pressure will stop her from having a tantrum so she will eat, because if she gets past the “point of no return” and gets too hungry, she won’t eat anything, even if she’s starving, and it might be hours until we can get her regulated again and past the meltdown.”

She smiled at me, made a miniscule note on her pad and said, “My goodness. How overwhelming.”

When did I become this walking, talking robot who had been forced to take a Masters class in learning about this little human being who doesn’t talk much and never does anything “by the book?”  When did I learn that my daughter craves sensory input (also called “sensory seeking”) in her mouth, but abhors it on her hands and feet (sensory avoidance)?  When did I learn that she will literally leap off of chairs, straight onto her knees, wincing in pain, to get that sensory “oomph” to push her over the edge into balance again?  When did I learn that she needs head protection to keep from banging her own head against walls, at times?   When did I learn that she basically needs to sleep in a padded, soft “cage” so that I can actually sleep without waking up, my heart pounding in fear, every five minutes all night, wondering if she’s ok?

What happened to that girl.

About 6 months ago, I started working again.  And one day my boss said to me, on a particularly difficult day, “You are, and always have been, a perfectionist.  There is just something in your DNA that’s almost OCD about getting everything done with perfection, excellence, and room to spare, every time.  You know, God never makes mistakes.  If you were God, wouldn’t you have given Emilie Baltimore a child with special needs?”

I smiled.  “If I were God, I think I would have given her twins.”

Someone once told me that “Within your greatest strength is also hidden your greatest weakness.”  I think that’s very true.  I would say that perhaps my greatest strengths are (1) never being willing to settle for less than my best– I literally hammer at something and am bothered by it until I conquer it, and (2) thinking things through completely and analytically– walking completely around and around a problem until I have thought about it a million different ways and see the clearest route forward. Then I execute without hesitation. I have always been this way.

The weaknesses inherent within these personality traits, though, are quite real.  My inability to allow something to remain “half finished” or a question “unanswered” has been a hard one for me, with Noelle. It’s hard to hear doctors say, “Well, she might do this or she might not. We just simply don’t know. We will just have to wait and see.”  It’s hard to put forth hours and hours of effort and attend therapy sessions and sensory practices, only to see that the Cheerio she ate yesterday is today flung in my face with a resounding scream of refusal.  Another weakness . . . even as I think things through SO carefully, I overthink them.  I get on the proverbial mental hamster wheel, lying awake at night, gazing at the ceiling, going over and over and over, ad nauseam, in my head, the plans for her future.  What if she never talks?  What if she never eats different foods?  What if she never stops being one hair away from death, and having meltdowns, and leaping off things, causing my heat to leap out of my chest in fear?

I paused a moment, in that car, listening to my own thoughts, so copious and chaotic and full of fear that I could almost hear them thudding against each other inside my head, frantically trying to organize and sort themselves out.

And right there I said, “I need something else. Something not about illness or therapy, or even my kids. I need something for me– just a little small thread of normalcy connecting me to that person I used to be– something to remind me that having a child with special needs (heck– having a child of any kind, really), is terribly hard work, but this too shall pass.

So I said to myself, “What have I always enjoyed and wanted to do.”  Travel. “Where have I always wanted to go?”  I pulled up my pinterest board, where I have a board entitled “Oh the places you’ll go!”  Overwhelmingly I had pinned images of England. Ok.  England it is.  “What can I do, in a hobby sense, while I am housebound all day?”  Bake.

And Cookies for England was born.  Yeah, maybe it’s a cheesy title (and what is WRONG WITH CHEESE, I MIGHT ASK????).  But it was borne of a mind that was rife with exhaustion, and a goal that was so tiny it didn’t ever seem like it would come to fruition. To be honest, its weary creator wasn’t even sure she could keep her eyes open long enough to write the first entry.  But she tried. It wasn’t perfect. It scraped her OCD, but she tried her best, and she got something accomplished.

Years passed.  Without realizing it, she got better– a little bit every day.  She started understanding her daughter a little bit more.  She started seeing her child as a supreme blessing, instead of an overwhelmingly scary burden of fear.  She started treasuring each smile, and each rare embrace.  Oh– and being housebound, she made an awful lot of cookies along the way, too.  She dusted off her old camera and tried to get better at using it. She learned the intricate complexities of photoshop, with the help of friends and copious hours of frustrating practice.  She learned that not everything has to be perfect, and that we can find a little scrap of joy in even the most challenging days.  She learned that love, joy, beauty . . . these are treasures to be savored, and even the crumbs can be scooped up and enjoyed with gratefulness.  There are always crumbs– always– if you just take the time to look for them.

She learned that it’s not worth it to get upset when the juice spills, or the crackers get mashed into the floor, or the kids color on the walls.  She learned to take walks, breathe deeply, and accept help when it was offered, without feeling like a failure.  She learned that taking a shower with the door closed is a gift.  She learned that good friends and laughter really are the best medicine.

And somewhere along the line, her little blog made her enough money to go to England.

It’s hard to believe.  It’s hard to believe that three years have passed in the blink of an eye, and that in just over a week I will finally get to go accomplish this goal that I longed for on all those lonely, tiring nights when I was “inventing” my British vacation and researching hotels in London that I knew I could never afford but pretended to be seriously considering, anyway.  It’s hard to believe that, while I was making those thousands of cookies– some of them gorgeous and some of them complete flops– and trying to figure out a way to invent studio lighting with the “scotch tape and bubblegum method” rather than spending thousands of dollars in professional photography equipment, I somehow slowly crept forward.

I don’t know if I ever really thought I’d accomplish this goal.  Somewhere along the line, the journey became the destination. I learned to love photographing food– casting it in its most favorable light, and pairing it with flowers and herbs I grew lovingly in my garden.  I learned to find peace and solace in doing that one little thing for myself– to remind myself that Emilie really still does love flowers and cooking and making beautiful things– and that she is still Emilie– albeit a stronger, more resilient version of herself– despite all the new and unexpected care-giving skills she has had to learn.

I don’t know what this girl will think, when she steps onto British soil for the first time.  Will she be nervous?  Unsure?  A little bit in shock?  Probably.  But don’t worry about her. She is good at rolling with the punches.

Will she be overwhelmed with beauty?  Gratefulness?  Intense, amazing joy?  Yes.

Oh, yes.

And however that joy finds her, and whether the weather is sunny or dark . . . she will just stand there and smile.

“On the roof tops of London . . . Cool, what a sight!”

You did it. And I’m just so proud of you.

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