Tuesday, January 25, 2011

Ten things Joseph wishes people understood

Joseph looked up from my laptop with tears in his eyes. He took a deep breath and told me, "I feel like I'm the only one sometimes." That item in the list from AllergyMoms.com founder and life coach Gina Clowes' new ebook "Ten Things Children with Food Allergies Want You to Know" resonated the most with my son. He noted that none of his closest friends or members of our immediate family have food allergies and sometimes that makes him feel left out.

We always point out when anyone successful or famous has food allergies, Joseph reads books that feature characters or real people with food allergies and he loves listening to Kyle Dine's music about food allergies. Our local support group NC FACES also is a wonderful way for Joseph to spend time with other kids who also must avoid allergens. But it's true, that isn't the same as having a really close buddy dealing with the same issues and emotions that come with food allergies.

One of those feelings is sadness. Joseph nodded right along when Clowes mentioned in her list feeling sad and left out at birthday celebrations while everyone else is digging into the birthday cake. He knows staying alive is more important than trying even a tiny bite of cake at a party, and he truly enjoys helping to make and decorate the cake slice or cupcake he brings to special occasions. But that doesn't erase the feelings that crop up with the isolation.

Another common emotion that Clowes addresses is fear — both the child's and the parents' fears about dying from an allergic reaction. Joseph's tears started flowing again when he talked about how scared he gets when he thinks about having a life-threatening reaction. He doesn't remember much about his anaphylactic reaction to a sip of milk when he was 21/2. But I certainly remember my own fear as I watched my little boy go from moving his tongue funny, to crying, vomiting and struggling for air within a couple minutes. I will never forget jabbing the EpiPen into his thigh and rushing to the hospital, where he needed more epinephrine, oxygen, steroids and other medication during an overnight stay to combat the anaphylaxis.

Those fears are valid. The reality is that food allergies have tragically ended too many lives. The ebook's forward by Sara Shannon, whose 13-year-old daughter Sabrina died from an allergic reaction to a trace of dairy, is testament to the seriousness of food allergies.

I think it's important for Joseph to talk about his fears, but we also don't dwell on them. We focus on what he can enjoy and do everything we can to keep him safe. It's those efforts to help him avoid peanuts, tree nuts, wheat, milk, egg and soy that sometimes bring misunderstandings, insensitive comments, judgmental stares and isolation from others. Perhaps Clowes' ebook will help more people understand how food-allergic children feel, what steps are necessary to maintain their safety and why those steps are necessary.

It also provides support and advice. The explanations about each of the 10 things listed could help parents who wish they knew how to succinctly explain reasons they take certain cautions to avoid cross-contamination or other contact with allergens. For example, it's nothing personal when we ask you not to kiss our child on the face after you have eaten food that is unsafe for him, it's just that your sign of affection could cause him to break out in itchy spots. Each chapter provides a statement from a child's point of view, along with "What you should know" and "How you can help" sections.

Joseph and I wiped our tears and had a good hug after reading Clowes' ebook. I hope that the more people understand the voices her book represents, the fewer tears children like my son will need to shed.

Click on Ten Things Children with Food Allergies Want You to Know for information about the ebook and the related teleseminar Clowes is hosting on Thursday, Jan. 27 at 7 p.m. eastern time.

No comments:

Post a Comment