In this blog post I would like to share how we have handled family gatherings to make them as smooth as possible, and enjoyable. This blog has come to be because over the years I have heard a lot of people stressing out over family gatherings or events that they are going to attend. They worry about the fact that there might not be foods for them to eat, or that people will ask them why they are eating different foods, and I have learned how to solve that problem.
I would like to start of by giving you a few things to think about.....first of all it is important for you to remember that not everyone knows what PKU is, and not everyone wants to learn. When my first was diagnosed with PKU I became so frustrated because I wanted to tell the world what PKU was. I especially wanted family members to know and care about this disorder. I wanted to help educate people, but as time went on I realized that for most people they will never in their entire lives meet another person with PKU, and it isn’t essential they know about PKU. If someone is interested, that is a different story, but reality is I didn’t need to tell everyone.
Secondly, you cannot expect everyone to want to learn about the foods that a person with PKU can and cannot eat. It would be nice if they knew, but not everyone is going to want to find special recipes or cook special foods, and for some people the thought of cooking for someone with a special dietary need can feel overwhelming or even scary. This doesn’t mean they do not care about you, or want to exclude you. It might just mean they have no clue and, no one wants to screw up and be the reason you or your child’s diet was messed up.
Thirdly, focus on the event, and the time being spent with the people who have invited you. Instead of spending every second focusing on what will be on the menu that the person with PKU cannot eat focus on the fact that you are there. Be in the moment. If you are with friends or family members focus on spending the time with them.....having fun, and view the food portion is being less important than the time spent with the people. Unfortunately, in our society we often spend so much time focusing on food that when going to a family gathering we forget to put the main focus on spending the time with the people.
Some of what we did to make life easier especially when attending family gatherings or events was to bring food. I always started by asking the host/hostess what was on the menu. If I found they were going to be having foods that were very similar to something my child could eat then I made a portion of that item to take along for my child. If there was something on the menu that I knew my child could have then I would let them have it. I would also find a few complimentary dishes that I knew would be tasty for everyone to eat, and would make enough to bring along to share.
Many times, people wouldn’t even realize the foods they were eating was something that was appropriate for the PKU diet. For example, a huge hit with family was an orange tapioca fluff that I would make. All ingredients in this recipe were ingredients that could be purchased in the store, and there were no special low protein items. When I first started bringing this dish to family gatherings I would just put it on the table and not say a thing (along with anything else I brought). When it came time to eating I would make my children’s plates (when they were young), or they would know what items I brought and what they could have when they were older. We never made a big deal out of the fact that there were low protein foods on the table, and no one ever questioned what my girls were eating and why. The funny thing was over time family came to expect those foods on their table, and if I didn’t make them they would ask why and be disappointed.
PKU doesn’t need to hold you or your family back. PKU doesn’t need to be the main focus of family gatherings and events. PKU doesn’t have to make you or your child feel left out or excluded, but what PKU can do is introduce new and exciting recipes to people who might not have ever tried them or even have known that they existed.
Attend family gatherings, focus on the people, and have fun!
About the author: Michelle currently lives in Wisconsin, and is the mother to 9 children (3 with PKU), and she is a grandmother. If you would like to contact Michelle you can email her at michelle.d.hardy@gmail.com
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