Obviously we are very open about Luke's PKU and we do this in the hopes that this will make it natural for Luke to hear about his condition. To me a very important thing is that he knows he does not need to hide it, ever. We have talked about high phe/low phe foods since we found out about his PKU and especially since Luke started eating solid food. It is something that was encouraged by his metabolic team and it really made sense to us. Plus with me running a day home and other children around, I hoped they too would understand the importance of being careful with food.
Well it seems that this method was very effective as our smart little three year old knows to ask if the food is high phe (red light) or low phe (green light), and also he knows many of the foods that are very high. Some of the things he says are:
"Oh no, that is high phe and will hurt my brain"
"Is this my PKU cheese or high phe cheese?"
"Is this a red light Mommy?"
"too much phe for me?"
To hear him say these things just makes my Mommy heart proud, it gives me hope that if there is a time when he is offered food by someone who may not know his condition, he will have the words to convey that it is not safe or okay to give to him.
The wonderful kids we have that spend the days with us are also very compassionate and talk often about not sharing foods and they too often ask me if a food is high phe or "PKU food." They know Luke eats different nuggets then they do and that his grilled cheese is PKU friendly. How amazing are these kids?!? And to go with these amazing kids add in amazing parents!
My eyes have been opened up to the compassion and caring of others through the acceptance and consideration that has been shown to us. Yes there are a lot of ugly, scary things in this world, but in our community, our circle of people, there is love.
Now it is time to celebrate this awesome little man turning THREE!!
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