February Blog Carnival Post: Chronic Illness (Food Allergies) and Relationships

My son was 10 months old when he was diagnosed with multiple life threatening food allergies. You can read how we discovered them here. My life completely changed that day. I now had a child that had the potential to die if he ate something that he was allergic to. I also had a child that would swell up if he touched or was touched by something he was allergic to (he is contact reactive to wheat). Our home had to become a safe haven for him from his allergens. My cooking had to be adapted for his allergies. Birthdays, holidays, and vacations had to be reworked so that they would be safe for him. I had to find a new normal. As a family, we had to find a new normal. He was only 10 months old so for him, living with food allergies is his normal. But we were not the only ones affected. Our extended family and close friends were also affected that day. They also had to find a new normal. And after almost 5 years of living with food allergies, some days, there are few of them still trying to find it.

At the time, having a 10 month old that crawled around and put everything in his mouth meant that I had to be hyper vigilant with keeping anything he was allergic to away from him. I also had to remind anyone that came in contact with him that if you wanted to touch or hold the baby you had to wash your hands. If you ate a sandwich and touched him, he would get hives (and this is still the case with him) where ever he was touched. We also decided that since he was young enough not to remember holidays filled with cookies, candies and foods that he was now allergic to, that we would remove those items from our celebrations. There would be enough times in his life when he was going to feel left out but we didn't want memories from his childhood that were supposed to be filled with happiness and joy to be filled with sadness or feelings of frustration due to his food allergies. His home should be a place where he didn't have to worry about having a reaction and we certainly didn't want him to have to spend holidays or birthdays in the ER if we could prevent it. We decided that until he was old enough to know for himself to stay away or not eat anything he was allergic to that we would spend holidays at our home with only safe food and friends and family were welcome to come and visit us whenever they wanted. Our home was open to everyone whenever it was convient for them. We weren't asking anyone to change the way they celebrated holidays. We were just saying that for us, the circumstances had changed so we were changing with them.

I know that everyone loves our son and only wants what is best for him. No one would do anything that would intentionally put him in harms way. But our new way of living was met with resistance. And 5 years later, it sometimes still is. It's hard for others to change. And if you don't live with food allergies every day, it's hard to understand all that goes into keeping a child safe. Traditions and family get togethers are wrapped around food. And most of those foods my child is allergic to. By us saying "I'm sorry, we can't come because of the food allergies" or "We'll come, but we're leaving before the food", it was sometimes taken as a rejection of family traditions or friends/family altogether. There were plenty of hurt feelings along the way. Some relationships have been damaged beyond repair and those people don't come around anymore. It was never our intention to hurt anyone's feelings, but only keep our son safe. Imagine how we feel when clearly "food" is more important than our child. We've tried to shield him from most of that but the older he gets the more I know he will understand and feel it.

He is getting older now and his safety is still a concern, but I don't need to be hyper vigilant like I was. We are able to go to more things that have his allergens. But we do still have to be careful. Just a few weeks ago he ended up in the ER but this time it was more due to his dog allergy than his food allergies.

This issue of safety for the food allergic person vs. family traditions is a huge problem for many that I've spoken with in the food allergy community. Around any holiday you can find a big influx of threads on the Baby Center Food Allergy Board on how to handle family and friends. It seems many people think you are "trying to tell them what to do" when you are actually only trying to keep you or your child safe. Families have actually boycotted the food allergy family over this issue. You can get an example of some of these issues here

Luckily our family has adapted for the most part over these last 5 years. While issues still arise there is a mutal respect and understanding that has grown between us all. But it's taken 5 years to get here. And the issues aren't completely ironed out. But for anyone just starting out I'd say, hang in there. It will get better.

And take heart! Here is post and comments about families that actually "get it" from Allergic Girl.