I recently had a few well-meaning people say some unintentionally hurtful things to me when I told them about Matthew's FPIES diagnosis. I realized that people may not know what to do with this news and are just trying to be helpful. However, being on the receiving end of these comments, in that moment, it felt like they were trivializing our struggles instead of acknowledging them. It served to remind me that no one can understand FPIES (or any illness, really) unless they live FPIES. If you don't want to be one of these people, read on.
Can you imagine not knowing what you can feed your child and always being in fear that any food item may result in hospitalization? Can you imagine keeping up with a baby's growing caloric needs with solely nursing for years? Imagine your child is being hurt by the very foods they supposed to thrive on, their source of nourishment, growth and healthy development. Imagine your child's confusion that you, their trusted, loving parent are feeding them things that make them feel ill - and imagine how we feel having to do it. That's our reality. If you know an FPIES family, here are some hints on how best to support them.
I originally had a lists of Don'ts but then decided to focus on the Do's solely.
Please Do
Can you imagine not knowing what you can feed your child and always being in fear that any food item may result in hospitalization? Can you imagine keeping up with a baby's growing caloric needs with solely nursing for years? Imagine your child is being hurt by the very foods they supposed to thrive on, their source of nourishment, growth and healthy development. Imagine your child's confusion that you, their trusted, loving parent are feeding them things that make them feel ill - and imagine how we feel having to do it. That's our reality. If you know an FPIES family, here are some hints on how best to support them.
I originally had a lists of Don'ts but then decided to focus on the Do's solely.
Please Do
- learn about FPIES - it's not your typical allergy. Ask questions of us and educate others.
- truly listen and empathize with us as best as you can.
- acknowledge the pain we feel and our daily struggles without judgement or asking us to think about the future.
- accept that some days are worse than others, and you might have caught us on a particularly bad day.
- understand that food is not fun for us, the way it might be for you and your family.
- be understanding if we hover around our children if there's food around.
- accept that our children may have feeding aversions/trauma, texture issues and a whole host of issues that might mean they are still on a bottle quite late, or are we need to continue with purees or extended breastfeeding and/or require occupational therapy for them to learn to chew and swallow.
- offer to spend time with us. I feel so much better taking Matthew out for a walk or activity if I'm not alone. I even prefer to feed Matthew with others as it helps me to worry less and normalizes the feeding for him. Also, having guests is a welcome distraction from worrying. If there is a reaction, I'm sure we can count on your help.
- be cognizant of food allergies when you're around FPIES children. This means to:
- always ask the parent before you feed a child anything
- keep toys away from food (keep feeding and playing areas separate)
- clean up (even crumbs)
- be able to provide an ingredient list for any recipe you bring along
- think of non-food treat options to give children at parties and Hallowe'en
- be understanding if you get invited to a short party without food. My child needs to be safe in their own home, and I'm sure you can go two hours without eating.
- follow our instructions about what our child can eat/play with. Some children react to inks other non-food items.
- offer compassion, understanding, a shoulder, an ear and a hug.
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