Reposted with Permission from BucksMontMom.com

It took me a long time to have children so my husband and I had plenty of time to discuss the type of parents we hoped to be someday.  We philosophized based on what we saw from our friends (and their friends) with their children.  We knew it was not going to be easy to be a parent.  After all, when you are the only adults at a birthday party without kids of your own, you get to see different children and different styles of parenting.  As a researcher by nature, instead of a birthday party it became a brainstorming session.

When our son arrived, those plans all changed.  He was a few weeks premature so he came into this world as a tiny little being.  We spent hours upon hours awake at night feelings of endless frustration when he had colic.   They doctor said he had a milk allergy.  We removed dairy and life got a bit better.

As a toddler, we introduced foods the way most moms do with the jarred (organic) items, one at a time to see if there are any reactions.  There were no reactions, just a few items he refused to touch; a typical toddler.  When he could grab at the pieces of food himself he started gagging a bit too when he ate.  I told him to stop taking such big bites.

Since he was a preemie the doctors were not at all concerned about his being very low on the height and weight chart.  Just after his first birthday they told us he should start to catch up.  He didn’t.  He fell off the weight chart and our pediatrician ordered some tests.  In the meantime, he suggested that we do what we could to make our son eat more so he could put on the necessary weight.

Within a couple of months we learned that in addition to multiple food allergies (some potentially life-threatening) he has Asthma and a rare allergic disease called Eosinophilic Esophagitis (known as EE).

With EE, we learned that our son’s body cannot tolerate most foods.  In an instant I went from Casual Mom to the Extremely Overprotective Mom.  It was clearly not by choice.  I suddenly had to be that mom who oversees every tiny little detail of her child’s world.  It’s akin to living in a state of constant awareness and planning.  I am the parent that has to consistently connect and coordinate with daycare providers, teachers, counselors, school nurses and babysitters.  I try my best to strike a balance between advocating for my child and not being a royal pain in the butt.

It is a kick in the stomach to learn that your child is sick.   It’s a kick in the stomach to wonder how your child will deal with it as he gets older.  It’s a another kick in the stomach to wonder whether you should try to have more children for fear that they may have the same disease.  As odd as it may sound, it’s also a kick in the stomach to learn that your entire approach to parenting has to change.

Our son has his moments when it hurts him so much to be different; to be known as The Kid with the Allergies.  He struggles between wanting everyone to know (the more people who know, the more who can help keep him safe) and wanting to crawl into a hole when they stare at his plate and see a cheap imitation of the exciting, delicious foods they are eating.  Most days he has an incredibly positive attitude about it.  He understands that his brain has told his body that some foods are poison and hopefully one day there will be a medicine available to re-train his brain.  It’s the days when he breaks down that are the awful ones. It’s those moments when we know with certainty that we would cut off our own limbs if it meant that he could just eat a slice of pizza.

Our family spends every day hoping that one day there really will be a medicine available to re-train his brain.  In the meantime, I am going to continue to be a proud advocate for my child.  I hope that by doing so, he will grow up to become an advocate in his own right, whether he uses his voice for his disease or another cause.  I hope that he will not see this disease as a limitation, but rather a lifestyle.  I hope he will continue to care for his health and well being.  In the meantime, I am proud to be his Allergy Mom.

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For more information about Eosinophilic Esophagitis, please visit:

American Partnership for Eosinophilic Disorders (APFED): www.apfed.org

Campaign Urging a Cure for Eosinophilic Disorders (CURED): www.curedfoundation.org

Center for Pediatric Eosinopilic Disorders at the Children’s Hospital of Philadelphia: www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/home.html

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Jessica Cohen is the Publisher of BucksMontMom.com.