Hazel's Allergy Journey - Part 2

I briefly mentioned in my first post about going to the Utah Food Allergy Conference on Saturday.  Jarom and I had a previous obligation and didn't make it to the classes and breakout sessions but we made it to the final speaker and the Q&A panel.  It was fabulous and I wish I had been able to attend the whole thing.  I am so happy that we made it to see Gina Clowes' presentation.  It was genious.  It was as if she stood up there and told my story exactly. 

Gina Clowes is the founder of AllergyMoms.com.  She has a son who was diagnosed with over a dozen food allergies.  Her website is a fantastic resource for parents of kids with food allergies.

To avoid confusion and to give credit where it's due, Gina's presentation will be in black and I'll highlight my thoughts in orange.  I talked to her after her presentation and asked if I could post about it on my blog and she gave her blessing. 

Her presentation was called "The Allergy Bomb: Dealing with a Devastating Diagnosis"

She began by telling her story and the day her son was diagnosed.  "Hives, eczema, vomiting, diarrhea" were some words I related to as I listened to her speak.  She remembers thinking of his future birthdays (something else I did too!) without cake.  She said that nothing prepares you for the news as you try to imagine your new normal.

Then she showed a slide with an illustration of Martha Beck's Cycle of Change.  I related it to the greif process and saw myself in each "square" as she spoke about how we cope with the news that our life is about to change.  I don't think this cycle relates only to those with a child with severe food allergies.  I think it relates to any parent with a child with special needs.

I'll try my best to illustrate Gina's explanation of the four squares of change.  I saw myself in each square and remembered how I felt when I was there. 

Square 1:  Death and Rebirth -  I don't know what's going on and that's okay

Gina suggests creating a Food Allergy Action Plan.  Make a written plan if there is a reaction.  Be comfortable with an Epi-pen and know exactly when and how to use it.  Find safe foods and recipes.  Reach out for support.  Learn to read food labels.  Know that your child is safe enough.  Look for the good in people.  Know that some don't see food allergies as real.  Awareness is spreading.

I'll never forget that day sitting in the doctor's office and later the car ride home trying to think about what Hazel's life would be like in the next 5, 10, 20 years.  I wondered (as people who first hear about her allergies do) what in the world she would eat??!!  I carefully read the instructions on the Epi-pen box.  I didn't think to write a Food Allergy Action Plan.  I am happy to report that I only return to this square after a reaction or anytime we experience a "new" situation.  I'm able to live my life in a level slightly less than panic most of the time.  But it took a while.  I remember being in a daze for several weeks afterward.  

Square 2:  Dreaming and Scheming -  There are no rules and that's okay

At this point in the cycle of change, you do whatever works for you.  Gina suggests that you think outside the box.  Think about different scenarios and what you will do.  Pour over cookbooks, support websites, etc.  Find help.  

This square is a little abstract and I think that's because it's different for everyone.  In this square, I tried to help Hazel eat normal things.  I found recipes for vegan waffles, pizza, cake and ice cream.  I found the green smoothie girl and realized I could make a nutritious smoothie each morning and get her lots of iron, fiber and calcium.  I decided to change our family's diet and include more Hazel-friendly snacks and meals.  

Square 3:  The Hero's Saga - This is harder than I thought and that's okay.

This is the stage where the hard work starts.  This is where you really think about it.  You clean out your kitchen and add more allergy-friendly items.  You figure out how to cook.  You create a 504 plan for school which is challenging.  You search for a good preschool or elementary school.   You educate those around you.  It's hard!!  It's scary!!  Gina illustrated with the analogy that every kid is climbing a mountain.  Those with allergies just have a little bit more in their backpack but when they get to the top, they have more strength.  We need to see them as dealing with it.  They are strong. 

I think this is still the stage where I am.  I feel like I am constantly educating people around me.  I am always looking for recipes.  I have cleaned out my kitchen and home and feel like it's a pretty safe place for Hazel.  I fond a medical ID bracelet.  I make her doctor appointments.  I lobbied on capitol hill for change that would help families with EoE.  I am working hard to make sure Hazel is always safe.  I plan, I research, I tell her story at least once a day.  I am trying to see her as dealing with it instead of suffering from it.  She IS strong.

Square 4:  The Promised Land - Everything is always changing and that's okay

This takes time.  Nobody tells you that being a parent of a child with food allergies is a new part-time job with no pay.  This square is where you feel settled in.  Along the way, there will be situations (going to school, on a trip, play dates, nursery, after a recent reaction, etc) that come up and take you back to square 1.  That's okay. 

I don't think I'm here yet.  I think sometimes I bring my toes right up to the line of the "promised land" before I head back to square 1, 2 or 3.  I think about sending Hazel to school and I know it will be a challenge for me.  I guess I'll have to cross that bridge when I get there.  I still have 3 glorious years at home with her.  Traveling with Hazel this year brought me a lot closer to this place.  It went so well, I know it's possible for us to live an almost normal life.  I think I just have to remember that to her, this is normal. 

Gina went on to give her advice for coping.  It was all wonderful and I'll try my best to convey it as eloquently as she did.  

Grieve - Give yourself time/space to grieve. It's okay.
Emotional Support - Find someone in a good place and walk with them.
Lifting up the Covers - It's okay to feel jealous of a kid eating something your child can't.
Practical Help - Get help when you need it.  Do what you need to do.  Cleaning lady (I wish!), Eat on paper plates, etc.
Bag, Better, Barter - Food Allergy Action Plan, bag stuff that doesn't work.
Healthy Coping - Take care of YOURSELF!  Be empowered.  Do fun things.  Balance.

She ended by explaining that they don't see it the way we do.  To them, it is normal. 

I think everyone does these things in their own way.  I feel like now that we're in a pretty comfortable place with Hazel's allergies that I'm able to take more time for myself.  I leave to go running and do Zumba.  I try to take care of my body.  I try to take care of my family.  I have reached out for support from other families and I take advantage of the UFAN activities when I can.  


I loved this presentation so much.  I think it's good to identify where I am in the cycle.  I also think it's good to know that even though you might feel like you were thrown under a bus - it gets better.  You'll advance to each stage with more confidence and knowledge.  I'm amazed at how much I've learned in the short time since Hazel's diagnosis.  My life is different, but in a very good way.


I hope this helps you feel like you are not alone.  


Next Up:  Hazel's Allergy Journey - Part 3 - My best tips, tricks, recipes and advice