Parenting comes to life in the stories we share.
Whether it’s a moment of joy or a moment of distress, we can learn from each other.
Hayley Williams, Waterloo Region, ON
Birthday parties, family gatherings, casual stops for ice cream, having a meal at a restaurant, travelling, trick or treating, Easter egg hunts, hot chocolate at a Santa Claus parade—these are the special little moments that a parent looks forward to sharing with their children.
For our family, our daughter’s diagnoses of severe allergies has forever changed the way that we experience these small joys.
It all started with a crumb from a buttered bagel on a family member’s finger. Our youngest daughter was 6 months old at the time, and the family member just popped a finger with the crumb into Sara’s mouth, not thinking anything of it. I went ahead and breast fed her, as it was almost nap time. As I was feeding her, she started coughing. I kept checking her, thinking maybe she was drinking in a strange position. She wasn’t choking on anything that I could see, but she was truly struggling and starting to lose colour.
I wish that I could say I stayed cool under the pressure, but I didn’t. I vividly remember screaming at the 911 operator that my baby was turning blue and losing her ability to breathe. In the ambulance, Sara began to breathe more regularly and her colour started to come back to her precious little face. At the time, doctors did not offer any guesses about what might have happened. We left the hospital that day with no answers and many, many questions.
Fast forward to two months later when I fed Sara some tiny pasta shells; within an hour, she was struggling to breathe and covered in hives from her head to her toes. Again, we rushed her to the hospital, where this time they treated her for anaphylaxis. Doctors guessed that her allergy must be to wheat, but said we would need to go for further testing to find out.
After countless trips to blood labs and many visits to the allergist, we had our diagnosis: Sara was severely allergic to egg, wheat, and dairy. That’s right – food, essentially! I remember leaving the appointment sort of stunned, but also thinking ‘okay…we can figure this out’. It wasn’t until we sat down to actually figure it out, that the magnitude of the situation presented itself.
Do you know what wheat is in? Wheat is in everything. In all the delicious foods that we love to eat – breads, desserts, sauces, etc. It’s also in toothpaste and craft supplies and makeup and the list goes on…and on. We were beginning to realize how limiting these allergies were going to be, and it was really scary.
We knew we were facing a new way of being in our world. The daily grind of creating meals entirely from scratch every day, with no reprieve from take-out pizza or burgers. Missing out on the little joys, like grabbing ice cream with our kids when we go to the beach or the spontaneous road trip we couldn’t do because we might not find safe food or be close enough to a hospital. The delight of being invited to a birthday party or play date being tarnished because these visits are labour intensive, not only for us as we work to figure out how to safely make these things happen, but also for our kiddo who has to know, at the very young age of 3, to constantly ask if things are safe for her—and to constantly hear my anxiety-ridden, voice shouting not to touch that, not to put anything in her mouth.
It’s hard to describe the fear that exists in every second of everyday that a simple smell, touch, or taste of food could literally kill your child. It’s hard to describe how it feels inside when you catch people rolling their eyes at you because you’re talking about allergies again, or to have the swim instructor look at you like you’re crazy because you ask her to wash her hands after her morning smoothie. It’s hard to describe the fear that comes with signing your child up for preschool, for kindergarten, knowing that you are putting her in a position where she is surrounded by things that can kill her and you can’t be there to protect her.
Parenting a highly allergic child is complicated. You become incredibly anxious, but try your best not to let your child feel it. You battle with yourself everyday because what you really want is to stay locked in your safe place and not go out into the big scary world. You also know that you have to; you have to create a sense of normalcy for your child. Reading every single food label time and time again, constantly scanning your surroundings, asking questions, cleaning, doing endless hours of research so that you can do simple things like take your kid to the dentist. You become exhausted.
Something that I didn’t anticipate with Sara and myself is how incredibly attached to each other we are. I left my 10-year office career to stay home with her after a reaction at daycare when she was 16 months old. The daily stress and worry of having her at the daycare became too much to handle. Because of that, we have been attached at the hip, always together and very connected to one another. Now, facing the reality that she WILL start JK next year, I understand that we will need to detach a bit from each other while still maintaining our close bond. What a difficult parenting challenge that will be.
At the end of the day, food allergies ARE manageable and there are much, much worse hardships to face in life. That said, it doesn’t make our challenges any less real. Living this life is a cycle of fighting for normalcy and rising above the challenges, and then being hit hard by the reality of things. Falling into that hole of fear, then rising back up again.
We are fortunate to be living in a time where food allergies are becoming more and more prevalent and therefore we find more empathy from people in general. We find more companies being truly aware of the needs of allergy families. I thank the universe every day for Disney, Kelly’s Bakery, Enjoy Life, and Made Good, to name a few! I, personally, have found so much strength and support in online groups of parents who are in the same position because they truly understand the life we’re living.
I don’t know where this food allergy journey will take us, but what I know for sure is that I will do my absolute best to ensure that my daughter walks through life feeling capable, prepared, and equal to her peers no matter what the mess in the background looks like. We will create our own versions of life’s simple joys, remembering that everyone has a unique path and this is what ours happens to look like.
Our journey might not be lined with ice cream, pasta, and brownies, but it certainly is lined with tenacity, adventure, and love. The best part is, we’re in it together.
Hayley is the proud mom of two beautiful daughters. She is also part of our Experienced Parent team, here at Parenting Now. You can connect with Hayley through our Let’s Talk Parenting online chat. Hayley would love to talk about your parenting challenges with allergies ….or other parenting concerns. You can read more about her by visiting our Let’s Talk Parenting page.