I also see very frequently people getting upset that others don’t think about their dietary needs. One thing I have always reminded my girls is that they have lived with PKU their entire lives and the other people haven’t. Even if it is family, they really do not know the ins and outs of PKU because they are not living it. They may have an idea about it, and I am sure they do not mean to be rude, or make you or your child feel uncared about or unloved. They just have not lived it....they do not know it especially if they do not see you on a almost daily basis.
Take for example, my mother.....when my girls were little she knew their diet inside and out. She would bake for them, and buy them low protein foods. Now.....many years later the girls are on kuvan, and that means a huge change for them. It also means that my mother no longer knows what they can and cannot have because their diet now includes things that used to be forbidden. She no longer sees them as much because we do not live as closer together as we used to. Should I fault my mother for not knowing? Does it mean she doesn’t care? The answer to both of those questions is no. My mother loves my children just as much as she used to, but reality is she doesn’t live with PKU every single day.
I understand the sadness and frustration when one feels their child or themselves are not included, but again I encourage you to think about it from their perspective. If they don’t live it, they don’t know it. Here is an example of something similar that is not PKU related....a couple of months back we celebrated my husband’s 50th birthday, and we invited family and friends. One of my nieces came who I had not seen in a long time, and she was sharing with us all about her clean living diet. Now I do not know what that is.....I have not lived it. I have a general idea, but not enough that I would know everything she could and could not eat. She could have very easily been upset that we didn’t provide her with the foods she wanted. She could have spent the day focusing on the foods we had that she couldn’t have, but that didn’t happen. Instead she focused on spending time with family and she ate the things she could. Another example, I am allergic to nuts (deathly allergic), and over the years I have gone to many parties and events where dishes had nuts in them.....instead of me focusing on the things I cannot have I focus on what I can and focus on the event and people present.
So, all that being said I would like to say that we do not skip holiday events nor do we dread them in our house. When invited we spend very little time worrying about what will be there for our girls, but instead we focus on the event itself and getting together with family or friends. I have always taught my daughters, that holiday parties really aren’t all about the food, but instead they should focus on being with family and friends and focusing on the love that everyone shares.
Unfortunately in our society we focus so much on the food, and that shouldn’t be what it is all about because we should be instead looking at what is truly the most important thing and that is being with loved ones? Will you (or your child) be sad when the food is gone, or will they be sad if those people are not in their lives anymore? The people are what is truly important.
Of course, that doesn’t mean to ignore the diet, and we need to find ways to deal with it. The way we have always done it was to find out what the menu was going to be, and then we would bring some additional foods that were PKU (and everyone) friendly. Instead of focusing on what they couldn’t have we would bring lots of tasty foods that everyone would love. If the menu was severely lacking in what the girls could have we would bring more dishes to share....I very rarely brought a dish that was just enough for the girls but instead brought enough to share with everyone. Sometimes in PKU groups I see people complaining that they brought their low protein food and then everyone else ate it, and they had nothing to eat by the time they got through the buffet line. If that is the case I would encourage you to not just bring enough for yourself, but bring enough to share. If everyone is taking it, and everyone is eating it that is a very positive thing. That means it tastes good and they like it, so why not share? Sometimes when you share you might find something that other people will like so much they will ask you for the recipe and start making it themselves.
For example, many years ago I found a recipe for something called Orange Fluff....at this point I am not even sure if that is the official name, or if that is just what my family calls it. I don’t even have the recipe anymore, but have made it so much that I know exactly how to make it from memory. When my older girls were little I started to make orange fluff to take to holiday events, and it was such a hit with everyone. No one realized it was low protein, and to this day that orange fluff is something that family asks me to bring, and people have asked for the recipe. In fact, this year one of my adult daughters (who doesn’t live close to us anymore and who doesn’t have PKU) contacted me and asked me how to make orange fluff for Thanksgiving. Even though this isn’t a traditional Thanksgiving food it is something that is so loved that even my daughter wanted it to share it with her friends for the Thanksgiving dinner she is hosting.
So as new parents with kids who have PKU I highly encourage you to shift your mindset and shift your view a little. Focus on the fact that your family was invited....that means people want to spend this time with you. Focus on the people, and the fun, and then if necessary bring foods to share. With the right attitude towards events such as holidays your child will come out of it with a positive attitude. I know my three girls are always positive when invited even if those events involve food.
Hang in there new parents.....try not to stress out over PKU and what they cannot have.....the more normally you view it the more your child will as he/she grows. Focus on what is most important during the holidays....spending time with friends and family that care about you and your child.
About the author: Michelle Hardy currently lives in Wisconsin and is the mother to nine children (3 with PKU). If you would like to contact Michelle directly you can email her at PKUOrgofWI@gmail.com
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