Guest author and food allergy mom Stephanie Hulme, the creator behind @positivelyallergic on Instagram shares a milestone in her family's allergic life — her son with food allergies goes out to eat with some of his besties.
She shares that nothing truly prepares you for that first “I’m going out with some friends.” Though they knew the day would come, they didn't know how it would go. Read. Find out. Take heart.
My son William has life threatening allergies to all nuts, mustard, sesame, and flax seed, as well as allergies to pollen and dust mites. He was 3 when he went into anaphylactic shock and we were thrust into this allergy world, one I now refer to as our allergy adventure. At the time I wasn’t aware of allergies or how serious they could be. Williams' reaction was unexpected and I still struggle to talk about it now without welling up.
Back then I was desperate for answers but there was a serious lack of guidance and support which is why I decided to start Positively Allergic. I refused to let allergies take over our lives and be all people knew about William. I wanted to show the world that my son will go on to accomplish amazing things; all his allergies mean is that he has to be that little bit more careful.
As a parent, you always worry about your child, but throw the serious threat of an allergic reaction into the mix and it can feel overwhelming. I used to spend my mornings planning in-depth for trips to the park or the supermarket. When he was first diagnosed with all these allergies, I started to plan meticulously to the point that I missed signs of my own anxiety. A price I would pay later on. You see, unless you know someone who suffers from allergies, you don’t see the thoughts spinning around in their head all hours of the day, things like:
The stress and worry over the constant risk that our child might be exposed to something on your watch.
The constant (to the point of obsession) checking of environments, food, surfaces, and medication.
The almost breaking point nerves you try to hide when you entrust the care of your child to someone else.
The fight I have every night with my thoughts on how I’m going to let him go to school the next day.
Trying to remain calm so your child doesn’t pick up on any stress or anxiety.
How to prepare our child to take responsibility for his allergies, to ensure he knows how to keep himself safe when others fail him.
All these thoughts can be so consuming, but what never fails to amaze me is William’s way of dealing with it all. He has never complained. He has dealt with every hurdle head on and reacts to it better than most adults I know (and I include myself in that list.) He has become such a confident, brave, and inspiring allergy advocate that I spend my days in awe of him.
As William gets older, I have been forced to relinquish control and let him have more freedom. We started preparing for this from a young age by talking openly about his allergies, ensuring he knew how to read labels and understood the risks being played out in front of him in restaurants. He recently started to carry his own epi-pens and actively wears a MedicAlert bracelet. He came up with the idea of making an epi-pen video (on Instagram) which was shared among many schools here in the UK through our Allergy Awareness Assembly project. I honestly believe that by starting an early education has helped him better understand the challenges that lie ahead and build resilience to them.
Of course, nothing truly prepares you for the first “I’m going out with some friends.” We knew this day would come but we didn’t know how it would go.
William arranged to meet his two besties for a walk and their plan was to pop into a bakery we know and love for a treat {@greendoor_bakery.} Thankfully I know the owner well. I made her aware of their visit and she assured me she would be in that day and to have William ask for her so she could make sure his treat was safe.
William remembered everything we spoke about.
When his friends came by to pick him up and walk to the bakery, they assured me they knew what to do in an emergency and where his epi-pens were stored. They even told me that their parents had run through it with them the night before the outing. Even though they are just 11, they understand how important his allergies are.
I wanted to take the time here to say that I never thought William would be able to find such good friends. Friends that truly understood his allergies and never judged him for it. But to these two little boys, Oliver and Gabriel and their amazing parents, my heart will forever be grateful.
The whole time he was away my heart was in my stomach. But, my goodness, it was so worth it. His pride and excitement over handling this ‘solo (-ish)’ excursion to an eatery, and the fact he had the best milkshake of his life meant he was over the moon for the rest of the day.
Since then, Will and his friends have become “regulars” at the bakery. (I think he secretly hopes they will name a milkshake after him!)
As we look ahead to what high school will bring for Will, an exciting new chapter for sure, it looks like a lot more independence will be in the cards, too. But you know what? His wonderful friends who get it, the adults that cater to allergies and prioritize inclusivity, and our amazing children who are so aware of their allergies, give me reassurance that it’s all going to be okay.
William is the reason we are in this allergy community and when he was first diagnosed, I had a negative view on what his life would be like.
But I was WRONG.
His courage and positivity have shown me a world of possibilities, of change, of being adaptable, and how to always find the good.
He once said to me, “It doesn’t make me sad having allergies, it means you’re unique.”
So, to any allergy parent out there struggling to just make it through each day, I encourage you to take a step back from the stress and anxiety to SEE how truly amazing your kids with food allergies are. They are superstars (and so are you.)
A word about Will’s work to spread awareness. Though he’s just 11, he’s not one to sit back and let others do all the work. He proactively champions allergy awareness. He’s raised funding for his favorite allergy charity @natashasfoundation, has spoken openly in the media — @bbcwalesnews, @itvwales — about what life as a child with allergies is like. His epi-pen video on Instagram has been viewed thousands of times across the world.
Will has accomplished so much for such a young kid and it gives him confidence knowing he has a fantastic allergy community supporting him each step of the way. He refuses to focus on the negative because he says, “What’s the point? ” As he gets older, he wants to see change and be a part of making that change happen.
About the Author: Stephanie Hulme is the creator behind @positivelyallergic on Instagram and parents 3 awesome kids with her husband, Matt. William, her son with allergies, brave and outspoken, tries to make a positive difference for our food allergy community. Alexander, William’s little brother, can dance better than most adults while baby sister Lara rules the house. And then there’s Matt, her husband, who spends hours creating safe dishes for William, replicating what his friends are having, so William never feels left out at the table. Follow Will’s journey — their family’s journey — on @positivelyallergic on Instagram.
Image: Courtesy of Stephanie Hulme and @positivelyallergic