Parenting from the Food Allergy End

I stared at the allergist, watching him circle and highlight just how many things my 9-month old had tested positive for. It wasn't that I didn't believe him, it was that I already knew without needing confirmation.

 

I wasn't the one who asked for proof, it was the insurance company who wanted to know the reasons for the numerous office visits. I had seen the symptoms and conditions, I had been witness to them for almost a year. My child had been fidgety, uncomfortable, and in between bouts of diarrhea, vomiting, wheezing, eczema and a torturous tight drum of a stomach which his pediatrician had passed off as colic.

 

I knew what I was seeing was so much more than the shoebox category of colic, but few listened to me. What do I know, I'm just the one who watched him more than anyone else. As the physician underlined the test results with his finger, I found myself finally breathing free. His symptoms were real and everything people around me were telling me, that "Your baby is just one of those hard ones,” was wrong. 

My son wasn't hard or difficult. What he was, was scratchy, itchy, stuffy, with painful gas and reflux and yes, of course he cried a lot, but it was to be held. Because it was only in being close to me, skin to skin, that he could finally relax into a state loose enough to override his body reacting to any number of foods or environmental conditions from the day.

As I watched the doctor count out 18+ allergens, shaking his head back and forth, relief filled my body. Because now we could get started in making my son's world one without reaction.

 

***

I began with removing food colors and dyes. His eczema vanished. Next, I eliminated the food allergens of dairy, egg, banana, rice, nuts, in my diet since I was breastfeeding him. We had same-day relief from his explosive diarrhea and projectile vomiting.

 

I kept a calendar and noted how he did as I removed food, polyester clothing, scented laundry detergent and pink-tinted baby lotion from his life. He no longer pulled at his skin and we continued with success at every turn.

 

I was thrilled and empowered and as my son gained weight and smiled, I felt reward after reward. That was from what I could control inside my home. As we ventured out to play groups and neighborhood picnics at the park, I soon saw how this was not enough for others.

 

“Allergies? How awful! I couldn't handle that if I were you.”

 

“Oh my gosh. That's the last thing I'd need. Being a mom is hard enough!”

 

“I am so glad I'm not you. How do you do it?”

And the one that would make me grab the diaper bag and head for the door, "Aren't you scared he'll die?"

 

I was surprised to find that this was not an uncommon practice from other parents: to forget to be encouraging, helpful, compassionate, less knock the wind out of you. Whenever someone would ask, "Do you know if he'll be like this forever?" and I answered back, “We're just taking it one day at a time,” they were surprised and looked at me as if I didn't grasp the significance of food allergy.

Oh, I got it. And I lived it. I had just decided that all my plate could hold, was “one day at a time.”

 

Sometimes the parents caught themselves and tried to reel their words back in, “I mean, I have a cousin who is allergic to Brazil nuts. She seems to be Ok.” Other times they thought they were comforting me with, “I guess there are worse things.”

"There are worse things," provides no comfort. I don't want to live life with, “At least I have this and not that,” as if comparing suffering presumes the quality of others' lives below that of ours.

 

***

After we had changed my diet along with my son's, he went from a clenched-fist and leg-kicking infant to one with a serene and calm temperament. He still sought the comfort of my arms, because it was here, in his cries of physical discomfort, that our bond was formed. He had learned to trust me, and I was there when he cried out for something. Together we had figured things out.


He was always a beautiful baby and I remember how his mood became one of light and joy once we knew what to remove from our diets and environment. The way he had been tagged as “difficult” by others who had seen him twist and cry red-faced had been only through seeing his pain, his stomach distress, not anything else.

***

"What a beautiful boy," a parent at a play group said to me when my son was 15 months old. She was new to the group and not aware of any of our history. “Has he always been this happy?” she wanted to know.


“We had a few issues with food allergies in the beginning that the doctors thought was colic. But we've figured it out now.” I looked over at my son, who sits chewing on his toy in the center of a blanket with other children. He gurgles and blows spit bubbles, kicking his feet happily. It was true, his beautiful smile was always there. He grinned back at us to prove me right.

Raising a child with food allergies takes work. It's not easy. Now that he's a teen, he  confesses he wishes he didn't have allergies. I let him vent, because he's right. Life would be simpler to be able to eat anything without a second thought. There are times I wish the same thing, when I read about people going for ice cream or Friday night pizza. But our reality is different from that of others, and we've found our own way without the presence of certain foods.

People ask me if he'll ever outgrow his allergies. My hopes are different. I hope for him a level of command of his allergy. An attitude of assurance and competence in how we are able to handle our lives with vigilance and knowledge. I want him to pass this strength on to his children should they have food allergies of their own. I want him to instill in them a sense of determination and triumph when it comes to living with food allergy.

When I meet a new mom of food allergy through my food allergy groups, I make sure I offer them my life experience. I tell them I know how overwhelming it feels at first, but I make sure we have a moment for me to say, “Know this will take work, and know that sometimes you'll feel how unfair the circumstances can be. Your child is counting on you to not feel like this is stopping them from living or from doing the things they dream of, so empower them with accountability and belief in their knowledge. Instruct them on preparation and have them hands-on with their own care from the start. And tell them you wouldn't trade them or anything about them, for anything else in the world.” I tell them that last part is important.
 

"Mom, what's wrong with me?” my son asked when he was four years old and we were packing a separate treat for him to take to a birthday party. I answered honestly, “There is nothing wrong with you. If you're asking me why we need our own food and we read food labels, it's because of food allergy. But there is nothing wrong with you. There never has been. You are perfect.”

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