For me, the learning curve around my daughter’s allergies went through several stages: shock (I can’t believe she’s allergic to all of these foods and environmental factors), guilt (what did I do when I was pregnant with her that I should have done differently), knowledge seeking (how can I learn everything there is to know about this), knowledge sharing (how can I best educate my extended family and closest friends so that I can broaden her world safely) to acceptance (we’re in this together and we can handle it). As I moved through this learning curve, I have been able to extend and broaden my daughter’s world. When we first learned about our daughter’s allergies, we felt all alone – we didn’t know where to turn, we didn’t know anyone who knew how to help us and we knew nothing! We spent the first months / years learning as much as we could – we attended local allergy meetings, met numerous doctors, read a lot and talked to anyone we could. Eventually, we reached a place where we realized we knew more about dealing with allergies than many people we met and we could help others help themselves if they’re dealing with similar issues and we could help our families help us!
Until we reached the stage that I call knowledge sharing, we would sometimes become frustrated with our family – why did they buy that dessert with nuts in it? why are there eggs on the counter? why did they plan a family dinner menu with peas in it? We knew they knew about Morgan’s allergies and we knew they cared, but initially we didn’t understand why they would offer foods that were dangerous for Morgan. Then, we finally realized that just as we were once ignorant about dealing with allergies, they were as well. We had been focused on educating ourselves but we had failed to educate them along the way. That’s when we entered the Knowledge Sharing stage — we now knew enough to help them help us.
Today it is a very different situation. Our extended family has been wonderful making their worlds not only safe for Morgan but also very inviting. Never do we go to a family member’s home and encounter foods to which Morgan could have an anaphylactic reaction. Rarely do we even go to their homes for dinner and find something served that she can’t eat. And on the occassion when something isn’t right, we simply let them know because we have accepted Morgan’s allergies and we know that as hard as it is for us to monitor food and their ever changing ingredients and labels, it’s even harder for our family members who aren’t grocery shopping every week for a child with allergies. We know we are very lucky – Morgan’s Grandmom Norine, Grandad Bud, Pa Wayne, Nana Shirley, Aunt Cam, Uncle Chuck, Aunt Margaret, Uncle Matt, Nana Laurie and Grandma Barb are the best at ensuring Morgan is safe and that she never feels excluded from any family gathering due to food — they have helped extend and broaden Morgan’s world.
Tip: Broaden the World for your Child with Allergies by Extending the “Safe Zone” to those Closest to You:
When you have a child with severe allergies, the world can seem scary and your primary objective is to ensure that your child’s world is safe. To do that, we sometimes insulate our child and make her/his world small so it feels manageable. But this can be very limiting for your child. To broaden your child’s world, it’s easiest to first extend the “safe zone” with those people closest to us. To do that, I believe it’s important that you follow the 3 R’s: 1) you constantly reinforce the importance of keeping the environment safe, 2) you remind them of the allergies and the symptoms and 3) you remember that it’s your own responsibility to educate them & share your knowledge – as a parent with a child with allergies you will always know more than anyone else about your child’s allergies. By broadening this world, not only is the world richer for your child but you are can also breathe easier knowing that there are now more people in the world who can safely take care of your child when you can’t be there.
June 11, 2007 at 11:20 pm
Kathie wrote: “Rarely do we even go to their homes for dinner and find something served that she can’t eat.”
Well, that’s because we rarely invite them to our homes. Har de har har.
In all seriousness, though, Morgan’s family (mom, dad and sister) and Morgan herself have been kind to include all of us (including Morgan’s many under-10 cousins) as they work through this long, ongoing process. They have shared their struggles and triumphs, and helped us feel like collaborators and supporters in an important journey. I think it has been an especially valuable opportunity for the cousins (two of whom are my kids) to learn about the issue of allergies and the larger issues of difference, disability and collaboration. Morgan and her family have normalized this experience for all of us, and shown us what real strength can look like.
Uncle Matt
June 15, 2007 at 4:38 pm
I found your blog through Matt & Margaret. My daughter, Ally, has sever food and environmental allergies that manifest itself through asthma. As I was dropping her off to go to the ball-game with Maya and going through the list of allergies, epi-pen & benadryl — they told me that you had a blog and about Morgan. My comfort level definately increased as they understood the associated issues.
My daughter was diagnosed at 14 months following a severe asthma attack. She is anaphlyactic to eggs and peanuts, highly allergic to soy and dairy which triggers severe asthma attacks. We deal with the wheat and skin issues.
I wholly agree with you that it takes an extended family to raise a child with allergies. That and educating the allergic child and those surrounding them that following the precautions is part of life and will ensure a great life.
Good luck!
mary