Transportation: Discussion about the choice of train vs driving in the event of an allergic reaction; what are the logistics of being in Toronto without our van, should Ethan end up at the hospital?
At breakfast: Was that dairy butter knife clean when placed in the jar of peanut butter? Yes. Am I sure? Yes. Perfect, no cross contamination risk. Don't forget to wash hands after handing Nolan the milk container, before emptying the dishwasher, to avoid contamination. Don't forget to put the milk back opposite Ethan's favourite apple juice boxes and apple sauce.
After breakfast: Snacks to pack... what will make Ethan feel special if he cannot safely eat in Toronto? What can I bring that is nutritious in case he doesn't feel safe eating lunch while there? Epi-pens packed, check again. And again. Discuss food alternatives with Ethan, inquire how he's feeling about the trip.
The train ride up: Who sat there before? What did they eat? Remind Ethan not to put his hands in his mouth. (The train ride back... same)
At the aquarium: Ethan touches every button in the place, and I wonder if he'll break out in hives. Also wonder how the heck he can be so joyous on the playground when all I see are toddlers with goldfish crackers in one hand and the stairs railing in the other. Promise myself not to let my anxious thoughts ruin his perfect childhood bliss.
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| Safely eating at the Rogers Centre |
Food: Two phone calls to Aramark at the Rogers Centre to find out about food ingredients in hopes Ethan had a safe choice. Relief that he did. Fear of cross contamination. Waiting in line (too long, always) only to slow it down more by asking for a manager to re-review Ethan's meal plan and view the ingredients list right on the product packaging. Snap a photo in case. Ethan receives chicken tenders, apple juice and kettle chips. Cloud nine. Jay and I ask him at least twice each if he feels ok. Proceed to eat pizza slice, worry about contaminating knapkins, drinks or Ethan's food with my fingers.
In our seats at the Blue Jay's game: Brookie and I have ice cream, sit with a gap seat to 'protect' Ethan. Feel guilty he can't enjoy a treat as nothing is safe on the menu. Offer candy, after finishing ice cream and cleaning hands. Joke with Ethan that now I cannot kiss him with ice cream mouth, but truly wonder how long I have to wait to kiss my own kid. Neighbouring kid sits down with ice cream beside Ethan and I pray it won't drop on his lap.
Back in the van: THANK GOD. Relief sitting back in our van. Deep relief. Safe space. Exhale.
At home: Quick meal of leftovers. Wished we could have stopped for food but know that would have created more anxious thoughts and risk for Ethan. Oh... school trip money is due. Sit down to pay, review another school activity which includes food that Ethan cannot safely eat. Feel angry that he cannot participate as other kids can. Is this how disability feels? He doesn't have a choice. There is zero accommodation. Safety first.
Bedtime: Prayers of thanks for a wonderful day of memories made. Extra gratitude for keeping Ethan safe and additional prayer that his angels help him avoid anaphylaxis in the future.
Do you worry about your child's every morsel of food? I do.
Do you worry that the next phone call from school will be a message that your child is on route to the hospital? I do.
Do your children worry their sibling will die? Mine do.
Do your partner and you regularly discuss matters of food safety, hospital access and life saving medication to prevent your child from the possibility of death? We do.
The truth is, anaphylaxis is an invisible disability. It is a chronic disease which regularly puts our son at risk. And power, for a food allergy family, comes in both the ability to manage the allergy safely as well as the ability to live life to the fullest, regardless of the risk.
Please take some time to really educate yourself and your children about the importance of caring for others with food allergies. It could safe a life.
#foodallergies #anaphylaxis #faam #dairyallergy
