Tuesday, May 13, 2014

Food Allergy Awareness Week - 5 Better Questions to Ask Allergy Families


What's he allergic to?
"My son has life-threatening food allergies to dairy, egg and all nuts."
How did you find out?
"We've known since he was 15-weeks-old, had his first sip of formula, broke out into hives and couldn't breathe."
Will he ever outgrow it?
"Based on his blood test numbers, he'll never outgrow it. There's advancing research to support a treatment, but not a cure."
Do you have allergies?
"No, my husband and I don't have food allergies and neither does anyone in our family."
What do you eat?
"Yes, we still order pizza, but after he's in bed... No, soy milk only in the house, we all drink it... You know I really like the taste of sunflower seed butter now... well, applesauce or baking soda and oil can be a substitute for egg while baking."
I am an allergy-mom and these are the questions that people usually ask me when they first learn that my son has food allergies. It's not necessarily in this order, but it's always these five questions. I've been asked these questions so many times that I have the above stock answers at the ready, and respond in an automatic voice.
The questions aren't mean spirited and come from a place of pure curiosity. However, they can be a bit daunting to answer over and over, especially in front of my son who is able to understand what, and who, we are talking about.
So during Food Allergy Awareness Week I want to take this opportunity to share five questions that friends can ask food allergy families instead. These questions are more productive and frankly, come from a place of thoughtfulness and eagerness to help the child with food allergies, rather than reassuring the person who is asking the question.
Like most of the families with food allergies that I know, we never expect special accommodations. In fact, we are quite consciously taking great steps to make sure that our son knows how to manage his own allergies and doesn't perceive himself as a victim. However, when one of the below questions is asked, it always touches my heart and makes me feel a surge of appreciation and affection for the friend who is asking it.
With 1 and in every 13 kids in the United States living with food allergies, it is likely that you know someone who is impacted by food allergies and will have the occasion to ask these questions yourself. Thank you in advance for doing so.
1. How can I educate my child and myself to make sure we're being extra safe around your child?
For children of any age, please reinforce two things; 1) hand washing after eating and, 2) to never share food. These little steps can make a big difference in keeping kids with food allergies safe. Plus it is just a good, healthy habit to get into.
For your grade-school aged child, teach them the seriousness and signs of an allergic reaction (swollen lips, wheezing, hives, stomach cramps) so they can help recognize when a classmate or friend is in danger and tell an adult immediately.
For your toddlers or preschoolers, give some thought to what food you bring to a park or public space, or try to minimize snacks on-the-go. At a park, pool or beach, focus on playing, swinging and sliding, not snacking. If you do have food, go for fruits, dried vegetables or pretzels. I've been in many stressful situations where a toddler is toting around a peanut butter and jelly sandwich, or a handful of pistachios at a public park. Of course this is a shared space and you're free to feed your child whatever you want, but I believe this is a small sacrifice to make for an act of kindness.
2. As a host, what can we serve at a birthday party or picnic that will help keep all of the children safe, reinforce how welcome your child is and how glad we are that he or she is there?
Again, this is never expected and we've grown accustomed to bringing food for our son. But when our friends offer this as a host of a party, it is such a kind gesture that really makes us feel safe and allows us to relax and enjoy ourselves more. Our hosts have always been happy to buy a certain brand of pretzel or hot dog bun if it ensures that my son can participate freely in the event or meal.
Additionally, as the parent of a child with food allergies, it is important for me to find a quiet and convenient time (not right before the party as guests are arriving) to train a host on how to use an epi-pen, and/or offer to stay myself if they are uncomfortable doing so.
3. What can I pack in my child's lunch so he or she can join yours at the peanut-free table?
I'm happy to provide ideas of an allergy-safe lunch and appreciate the opportunity to do so, in order for my child to sit with a friend during lunch.
Additionally, support an initiative at your child's school to help raise awareness of food allergies. This year the principal at our school came to me with the idea for a Peanut-Free CafĂ© based on the book by the same name by Gloria Koster. For one day only, all of the students were encouraged to bring an allergy safe lunch so that the kids who usually sit at the peanut-free table could sit anywhere.
Also, on this day, food allergy musician Kyle Dine performed two assemblies (one for grades K-3, and one for grades 4-5) using songs, puppets and games to deliver tactical education lessons related to food allergy safety. Even more important, his message and this day also delivered an overarching lesson of kindness, leadership and acceptance.
Kyle Dine has food allergies himself, yet travels the world finding a kid-friendly and fun way to communicate what could otherwise be a heavy topic. All of the kids in both of the assemblies were engaged, eager and entertained. Plus they really think of Kyle as a rock star. He kind of is, check out his music.

4. What kind of event can we plan for our families to enjoy together?

As a family with food allergies it can be challenging to socialize with other families. We always enjoy events where food is not the focus like bowling, swimming or any other activity. If we're having a back yard BBQ or getting together for a sports game, we're happy to provide ideas for allergy safe snacks, or bring our own.
We love going to baseball games and hockey games and appreciate when a team has a special game or night where they don't serve peanut products. Just a few weeks ago,The Florence Freedom baseball team in Florence Kentucky announced a partnership with Enjoy Life Foods to make their entire stadium peanut-free due to the intimate small setting and family friendly atmosphere.
Lastly, every year we participate in an awareness event, the FARE walk as a family and raise money to support food allergy research. We love when friends and family join us on this fun day!
5. What else can I tell my child about food allergies?
Remind your child often that different is cool! Some kids like pizza, some kids play soccer. Some kids love art and some kids eat seafood. Whether its food allergies, skin color, hobbies or interests, we're all wonderfully unique! Being different is what makes us all interesting and gives us new things to learn from one another!
Carissa has written the below essays about parenting with food allergies on her blog, www.carissak.com, The Huffington Post and on Scary Mommy this week during Food Allergy Awareness Week.

The Climb Back Up

Seattle's Kerry Park is half way down the south slope of Queen Anne.  Overlooking a playground and nestled between charming hillside homes, the space has just a few park benches and a statue called "Changing Form".  It is a small park, yet boasts a majestic view.  

Several years ago, my husband and I happened to be driving by and with the sun setting, made a quick decision to pull over and take a look.  We could see the city, the mountains and surrounding waters.   In a town that has more overcast days than not, we were granted a rare evening with a view that was both stunning, and crystal clear.

Although at that time, our future was far from crystal clear and we were in the midst of our own metamorphosis and changing form.  Half way down the slope, or half way up the hill?  We were existing in some sort of half way space ourselves.  Breathing enough to be alive, but yet not fully engaged in life.  We were were playing the part of happy tourists, but beyond the role, we were so very far from happy. Our souls had been crushed and our hearts broken.

Just four months earlier, without expectation or explanation, our daughter had been born still thirty-eight and a half weeks into what had been a perfectly normal pregnancy.  On this June evening, I was still in the throws of a physical and emotional transformation.  

Physically, my body had the markings of a woman who had just gone through a pregnancy and delivery.  These postpartum symptoms were both a cruel joke and treasured testament.  My skin was newly adorned with stretch marks, my stomach squishy, my thighs full and my hair falling out.  But without our baby in my arms, my body boar the only physical proof of our daughter's existence.   I believed that my body had done what nature intended it to do, and labored, pushed and delivered a tragically unnatural result:  a silent and still baby.

The death of a child is a significant loss, but it is especially brutal when it is done at the same time you are preparing to meet your child.  So emotionally we were barely staying afloat and washed up in a wave of grief.  The simple act of taking a shower in the morning required a great deal of energy and could deplete us for the day.   We had lost our footing and now couldn’t find the appropriate lens from which to view a world that was forever changed.

In an attempt to escape the pain and darkness that surrounded us in our hometown of Chicago, my husband and I decided to take trip.  Just the planning of this getaway might give us something to look forward to and provide us with an alternative point of focus.  We needed a total change of scenery, to run as far away as we could from the flat surroundings of the Midwest and remove ourselves from every single person other than each other.  As the parents of our baby, we were the only ones who shared the depths of love for our child and could come close to understanding the grief of the other.

So we got on a plane, indulged in some inflight cocktails and landed in San Francisco.  From there, we drove up the West Coast to Seattle through Eureka, California and Bandon, Oregon.  For days, we weaved and climbed our way up Highway 101.  Along cliffs and through forests, beaches and towns, we steadily progressed.  At one point the GPS even lost track of us and placed us not on land, but smack dab in the middle of the Pacific Ocean.  Somehow seeing the image of us as a tiny dot, slowing advancing forward, yet in the middle of a giant blue graphic, felt freeing in a strange sort of way.  

In the Northwest corner of the United States, Seattle felt like the farthest point that we could run away from a haunting darkness.  But sitting on the park bench in Kerry Park, it became clear that this wasn't something we could run away from.  While I had done my loud, angry, sobbing cries over the previous months back in Chicago, sitting in Seattle on that night a slow and steady stream of tears quietly made their way down my cheek.  The tears were turned on by a sound of summer.  In the park on a lovely evening, these sounds were all around us, yet it was one sound in particular which seemed to drown out all others.  This was the sound of delighted children laughing and giggling as they played on the playground.  This was the sound of happiness. 

Until that moment, happiness was foreign to me.  It was a long lost emotion that I hadn't felt in months.  But as the sounds of the delighted children pierced straight to my heart reminding me of what I had lost, I was able to process something else.  It was fleeting, but present.  Even if I wasn't yet able to feel it, I was able to recognize it and a shift began to happen.  Happiness was present in the sound of the playing children, I wanted happiness.

With this recognition I could now resolve to move forward, and allow myself to take the journey back towards happiness.  Hundreds of miles from where we had said goodbye to our baby girl, I could allow myself to say good bye to the dream of our baby girl. I knew I would carry her with me always, but now I could move forward.  We had been stuck half way down the slope, but could now start our climb up the hill.  In that June evening, overlooking the space needle, the Olympic Peninsula and Elliot Bay, we watched the sun set, and instead of darkness falling, felt it begin to lighten.  We decided that we would return to Chicago, and make the most courageous decision of our lives, and attempt to have more children.

Last week, nearly eight years later, my husband and I returned to that park bench.  The "Changing Form" statue remained, the view was still majestic.  Once again we were playing the part of happy tourists from Chicago.  But this time our hearts were truly and sincerely full of happiness because on that park bench sat the three lights of our lives, our three living children.  They were bickering and laughing, shoving and hugging as they providing the sounds of summer.  As I saw them sitting there, I looked out over the landscape and I knew that my view was indeed, crystal clear.




It was Mother's Day weekend and I needed to be in that space, with those people.  They are my family, they are my heart and they are my soul.  Because even before they were born, the promise of their existence provided me with the courage to move forward out of the darkness and back toward happiness.

Bravery was necessary during last week's trip because I was attending my first book signing and reading of a piece I wrote about our stillborn daughter and her role in our family called, "Our Family Love Story".  The story is included in a book, "Three Minus One", and associated with the  film "Return to Zero".  Starring Minnie Driver and Paul Adelstein, "Return To Zero" is based on the true story of a successful couple who is getting ready for the arrival their first child when the baby dies just weeks before the due date.  The film premiers on Lifetime this Saturday, May 17th, at 8PM/7PM Central.

The book and the film surround a difficult topic.  Because the topic of stillbirth is so heartbreaking it can lead to a silent suffering for those going through it.  Director Sean Hanish and publisher Brooke Warner are hoping to break the silence of stillbirth, giving a voice to the parents who are grieving the loss of their children so that others can know they are not alone when this happens to them.

Breaking the silence, last week in Seattle, myself and six other authors read our pieces in the book at the Pacific Northwest Writers Association.  We had not met before, but were instantly connected by a bond of motherhood and united because of a love of our children.  In a powerfully moving afternoon we shared our stories remembering our children, Bennett, Dash, Frankie, Max, Isaiah, Annabelle and Trinity.  Through our stories we were able to provide healing to one another and to others who attended the event, some who had suffered the death of a baby very recently and some many years ago.  Because we were generous with our hearts and brave with our emotions, we know that the lives of our children have meaning and because of them, we have purpose.  

I hope you will be brave enough to view the film this weekend, attend a reading if one is in your area and help others who might be going through the silent suffering of stillbirth.










Saturday, May 3, 2014

Lessons from My Mother: Love is Fluid


Last week I wrote a piece thanking the mothers of my friends and explaining that I am the beneficiary of their life's work.  I feel their legacy in the ways that their children, my friends, support me on my own path of motherhood.  

Upon reading this piece, a friend described that "grandmothers, mothers and daughters are our mirror of love received and love given."  This beautifully worded sentiment made me stop to think about my reflection in the mirror, the one shaped by the love I receive from my own mother.  Just as it made me think about the reflections that I am shaping for my children by the love I am giving them.

The gift of love is truly that, a gift.  This gift has accompanied me for my entire life.  I have not known a single day, or even a breath of air, that hasn't been filled with love.   In and out of time and over years, I have been fortunate to have been loved by many; my family, my friends, my neighbors.  Yet the original love that welcomed me into the world and was bestowed upon me before I was even able to see the light, is the love of my mother.  This is a love that I could not understand until I had a child myself.  



Because the unconditional love of my mother surrounds me, it allows me to release my own love to my children.  Yet while I love my children always, they test the limitations of that love often.  At times they frustrate me or worry me, and moments later they can fill me with pride or make me swell with joy. 

One of the most important things that my mother taught me is that a mother's love is fluid and able to adjust as needed.  As I look back on different times in my youth, I am able to see her love manifest itself in different ways.  And so as I love my children, I can accept that I may feel conflicting emotions about them at times, but all of these feelings fall under the constant power of a mother’s love.  The love I receive from my mother has at times been firm, and patient, generous and fierce depending on the occasion.  

A Mother's Love is a Firm Love
As a teenager I once stole an ugly pair of red and blue shoes from a bowling alley.  When my mom realized I had them, she not only punished me,  but also insisted that I return the shoes immediately and issue an apology in person.  My mom drove me to the alley and scolded for most of the ride.  The ten minute trip felt like an eternity of misery to my teenage self.  With each passing minute I was filled with more and more dread over the mortifying idea of going back into the alley and admitting to my theft.  When we arrived at the bowling alley, my mom was still hot with disappointment and frustration.  She jerked the car into a parking place, threw it into park and stared at me hard.  I gulped.  In a steady and firm voice my mom offered to take the shoes into the alley and apologize on my behalf.  I cried with relief.  

As an adult I’ve talked about this incident a few times with my mom.  She claims that she knew all along that she would walk the shoes into the alley for me.  This plan was all a part of her strategy to punish and reinforce to me that I needed to reverse my action, yet show me that she had my back and would always be there to support me, even when she was furious with me.

And so at heated times when I am upset with the decisions of my own children, I know that I am able to love them with firmness just as my mother loves me.

A Mother's Love is a Patient Love
My brother and I often laugh about how my mom would get so frustrated with us that on more than one occasion she stormed out the door and got into her car.  We were not young babies and old enough to remember these events.  But when this happened, we would immediately stop our bickering, and give a concerned look to each other as we’d hear the garage door opening and the car backing out.  We wondered to ourselves if we had really sent her over the edge this time.

Solemnly we would stand in the front window and see her car driving past our house as it circled the neighborhood once, twice, and sometimes three times depending on how maddening our behavior had been.  With each pass, we’d shrug and say to each other, “well, she’s still in the neighborhood,” or, “five times?!  She must be really mad.”

While we joke about this now, my mom taught us an important lesson that it is ok to take space when you need it, but that love always remains.  And so in the noise and chatter and arguments of my own household now, I know that it is ok to pretend to be using the restroom longer than I really need to, or to send the kids to the basement to deal with each other while I sit in quiet.  And when I need a moment,  I pause, take a deep breath and try to find a way to love with patience.

A Mother’s Love is a Generous Love
My mother is a kindred and generous spirit without the limitations of self-consciousness.  Even at the risk of making herself look foolish, she has never been afraid to play a joke, or offer a hearty laugh if it helps make her children smile.  She’s a true subscriber to the power of play and she’s creative and resourceful with her tools of imagination.  She once furnished my Barbie Dream House with pieces created out of hairspray caps and cotton balls. 

A few months ago, during a family meal at a Japanese steak house, my son couldn’t participate in the act of catching food in your mouth due to his food allergies.  As a nine year old boy, that’s pretty fun, so he was pretty disappointed.  But after the meal, my mom took him into her formal living room and threw popcorn into the air for him to catch in his mouth, as we all rolled with laughter at how silly and ridiculous the scene was.

Recently she was playing with my children and took an old pair of pantyhose and covered her face in a silly game that distorted her features.  The kids laughed with delight and I was reminded that she taught me to never take myself too seriously. 

Thanks to my mom, I appreciate laughter and love with a generosity that will never let my own concerns with self or image get in the way of a sharing a moment of happiness with my family.

A Mother’s Love is a Fierce Love
Fun and games aside, when I allow my mind to pull up an image of my mother from my childhood, it is an image of her hard at work, hunched over our dining room table grading school papers.

My mother is a retired elementary school teacher and spent thirty years giving herself to not just us, her own children, but to the community’s children.  Not only did she teach children, she co-authored a book full of teaching lessons and used around the country.   

In her work ethic I learned a sort of fierceness in love.  Because of the love of children and education, she threw herself into every lesson, every student and us at 110%.  I felt the power of that love and now know that to love something or someone is to love if fully and fiercely.

Firm, patient, generous and fierce.  Each of these qualities is reflected in the love I receive and the love I give.  As I struggle with the daily joys and frustrations of motherhood myself, I realize that the love I show my children will take many different forms, yet remain steadfast and true not just throughout their lifetime, but before and also beyond.  


Monday, April 21, 2014

The Last One



Although I’ve been asleep for hours, it only takes a minute for the subtle pitter-patter to permeate its way through my slumber.  As a parent, my sleep is only as deep as my child’s.  My tired conscious quickly catches up to my sub-conscious and processes the familiar scampering of two little feet.

“Vivian?”  I say, not yet fully alert.

“I have to go baf-room”, the sweet but determined voice answers in a cadence unique to her three years of age and vocal experience.

It’s our third time around potty training a child.  It’s our last time around, yet it is new all over again.  Since our older two children were given strict orders to never get out of bed by themselves the midnight sensation of having a child stand outside our bedroom door is an original one for us.  We didn’t intentionally change the rules for our youngest, we just forgot.

I elbow my husband who startles and then rolls out of bed to help her.  As they pass back from the bathroom to the bedroom that Vivian shares with her older sister, I say, “Vivi, do you want to come snuggle?”

“Ya!” she exclaims and crawls up into our bed nestling into my side.  Just like a missing piece of a puzzle, she still seems to fit exactly into the curve of my stomach.  Like a muscle memory, both her body and mine remember that she once spent nine months inside this cove, followed by eighteen months nourished from the breasts that settle just above her head.   The last several months were admittedly more for me, than for her.  She wiggles her little legs, and I rub my hand up and down them to warm them up.

Co-sleeping is a luxury that was never afforded to my older children, nor a gift I gave to myself.  With them I had worried that it would become a bad habit, or cause too much dependency.  With their youngest sister, I now worry that this will be the last time she’ll want to do this.  In the past, when I was newer to motherhood, the days felt endless and long.  Here at the end of this stage of motherhood I acknowledge both the threat and promise of endless days.  Now I know that the days are numbered in a way I didn’t understand before.

The passage of time is the cruelest paradox of parenthood.  In the most frustrating of moments, you can’t wait for it to pass.  These are the moments of splattered peas on the floor and toddlers throwing themselves to the ground.  Skipping ahead in the books, you can’t wait to see your baby crawl or your Kindergartner read a book.  But as soon as the stage arrives, you mourn what came before.  It’s a different kind of ache because it is for something that is not lost, rather something that has passed.

I look down at the little girl who in the dark of night is still my baby and whisper, “I love you” and kiss the top of her head, savoring the smell of her clean hair.

She looks up and gives me a sleepy smile.  Willing myself to freeze this sacred image forever, I add, “I’m so glad that you are here”. 

We don’t have children, we are given them.

We have often said that our youngest child, our last child, Vivian, is a pure gift.  Prior to having her, our hands were already full with a healthy and happy six-year-old son and two-year-old daughter.  Things felt busy and full, but yet, not “done”. 

We always knew we wanted three children.  Long before we understood that you can’t plan everything, that was the plan!  Now, we knew first hand just what could go wrong.  In our combined six years and four pregnancies of parenthood, we had struggled through infertility and having our newborn rushed into surgery before recovering in the NICU.  He now lives with life-threatening food allergies, which keeps us on our toes.  We suffered an early miscarriage and a devastating unexpected and unexplained full term stillbirth before finding the courage to soldier through the pregnancy of our then two-year-old, daughter.

Making the decision to try to have another child carried tremendous weight, because we knew just high the stakes were.  Our hearts had been broken, crushed and abused and were now full of joy.  Could we really risk it all again?

We had many conversations about this topic and agreed to enjoy our daughter for two full years before we made any decisions.  But as her second birthday approached, so did the topic.  

We discussed the heavier issues surrounding this decisions and the lighter ones too.  Did we have enough bedrooms in our current house?  Would it be hard to get a hotel room as a family of five, instead of a family of four?

But our tender, yet brave hearts wouldn’t let us be done.  While the plan had been shattered, our hope for more children remained steadfast.  Fine.  We agreed that we would try and pursued two simultaneous paths.  We looked into an international adoption and tried to conceive, trusting that something would present itself.

Just a few months later an answer did present itself by way of a positive pregnancy test.  And nine months later, our youngest daughter, Vivian, was born. 

Looking at her now in the twilight I can’t imagine our family without her in it, or a life in which she didn’t exist.  She rounds out my motherhood and completes us, all five of us.

It is fascinating to watch the dynamic of these three siblings as it ebbs and flows.  Sometimes the girls pair up and other times it’s the older ones who stick together.  Then at another moment, it might be the oldest and the youngest in sync with one another.  They bicker and argue, but they share a bond of siblinghood that will last for the rest of their lives.

As parents, transitioning from two to three children has been for us the biggest of the challenges.  We often joke that with her arrival, we became that family that is always running late and whose car is spewing food crumbs when the doors slide open.  Three years in, I still haven’t found my footing in this arrangement yet I’m very content.  Being out numbered on the parent-to-child ratio is not only for real, but a for real force!  It rarely seems that all three of them are happy at the same time and I joke that someone is crying, always.  Things feel very, very busy.

And then there is her.   In many ways she is our easiest child, and in other ways the hardest.  She was given the most daring of our baby names, yet likely won’t have a birthday party until she is ten.  She tags along to the activities of others, and draws attention to herself in ways her siblings never did.  Her socks are never matching, and her hand-me-down clothes are always running just a tad too big.  I forget the names of the kids in her preschool class and hope I remember to sign her up for soccer.  She’s my sidekick for errands and grocery store trips more so than a participant in playgroups or music class.

She is the last of our three greatest gifts and the one who will preserve this stage of motherhood for me.  I will parent her with a confidence I didn’t have before.  With my first child, I was always reaching and desperate to take hold of what was next.  With my last child, I cling to time even as I feel it being yanked away from me.  With her every stage, I’m desperate to freeze it, knowing it’s the last.  But alas, it slips away, just as another one enters.  My mind plays catch up, while my heart is stuck for a brief moment, finding a home for the memory of what has just passed. 

So as I gaze at her sleepy smile in the stillness of the night, I snuggle her a little closer.  I know that this age, this stage and this exact moment will only be presented to me once.   She can fit right here in the nook of my belly for just as long as she wants, because I’m just so thankful that she’s here.