A couple of weeks ago I decided to grab lunch at the food court at the mall. Looking at all the options I decided on Chik-fil-A. This was because I knew I could get a 'meal deal' which came with french fries for Zay's lunch.
Upon sitting down to enjoy our meal, I realize that Chik-fil-A has waffle fries. Normally very tasty, however...they leave the skin on the potatoes. Most people wouldn't know this, but there is A LOT of Phe in the skin of potatoes. Example...the skin from one potato has 115 mg Phe. To put that in perspective - right now Isaiah is only allowed 100 mg Phe per day!
So, I solve this problem by eating the skins off the waffle fries before giving the fries to Zay. Now...we are completely surrounded in tight quarters by all the last minute holiday shoppers, and I undoubtedly could see 2 different tables of people staring at me! I continued to shoo Isaiah from just grabbing the fries strait from the container and would take a couple of bites of each fry before feeding it to him. All I could think is...I am just sure I look like a mama bird pre-chewing food before feeding it to my baby bird!
I had to chuckle at this entire situation...but it was also humbling.
And then yesterday another incident happened. I've been blessed to attend MOPS at a local church that Shane and I have started attending. As always, I pack Isaiah a snack to have while he is in the nursery. Being the 3rd or 4th time Zay has been in the nursery, the workers are starting to remember Isaiah with his special diet.
When I went to pick Zay up afterward, one of the workers asked me if Zay had an allergy or if I just brought his food so I could control what he was having. I started explaining PKU, etc.
Bless this lady, she felt so bad for Isaiah, because while they were having snack, Zay was looking around at all the other kid's eating their popcorn and vanilla wafers, and had a sad look on his face. She even offered to bring pretzels and raisins so Zay could eat with the other kids. If it were only that easy!
I had to explain that his pretzels aren't just any pretzels, but if she wanted to bring fruit or veggies, he can have most of those.
I also explained that it has taken me a long time to come to terms with Zay's reality, and that he will be different for the rest of his life.
Shane and I have been told by other PKU families that feeling sorry for him isn't going to help him thrive. Instead, Shane and I have learned to take on the attitude that EVERYONE is different and has special things. Some kids need glasses. Some kids can't eat nuts. Some kids need a wheelchair. Zay just happens to eat differently than most kids. And that's ok...because he is THRIVING right where God has placed him...even if it appears his mom chews his food for him before he eats it...Ha! :)
4 comments:
I know those staring looks too! Curious as to what you count the Chick-fil-a fries at since you are eating the skins for him. :) We eat at Chick-fil-a quite a bit and my son likes to eat their fries. We often get looks though we he is eating just five or six fries and the rest of us are eating everything else. I always wonder what those people are thinking, but no one approaches us of course!
I have found it difficult to find places to eat when we are out and about too, Noah will eat french fries from anywhere! He loves them! And baked potato.
Right now I don't leave him very often and when the day comes that I have to I know it's going to be hard for me to adjust and trust someone else to really understand how important the diet is. Whenever I do have to explain it all, it seems like people get lost in what I'm saying and don't really understand. Needless to say, I don't explain much about it very often unless someone is very interested.
I am so thankful to have others to share experiences with and who understand without me explaining :)
Since I am a little different than others myself, having a big red birthmark on my face, I have learned a long time ago that everybody has something different going on and not to worry too much about what people think. I feel your pain also because I hate my child having to go through it. I dread when they get older, but right now it is still pretty easy to control the situation. It is daunting to have to explain it so many times to so many people, and then have people you already told who completely forget like they don't even care! I have some family members like that who drive me crazy. Some people are so self-absorbed they don't realize what others are going through.
We have pretty good luck eating out, but limited options also. At first we ate Cracker Barrel alot and Carson would have green beans and carrots, but now he is so picky he won't even eat that! Ruby Tuesday is a great option now because they have spaghetti squash with marinara sauce and broccoli, which he loves. He used to eat sweet potatoes at Logan's, but that is no more, at least for now he still loves their broccoli. He also loves Mexican food, where he gets to eat tortilla chips with salsa, Mexican rice, and mixed veggies. Even though it is higher in phe, we compensate for this special occasion meal by eating low pro the rest of the day. The strangest thing is that this boy won't eat potatoes unless they are tater tots! LOL! I guess that is a good thing for the future...
Like Julie, I am so thankful we have others who understand us. And Jackee, I can't believe he only gets 100mg a day! Wow! Carson's rx is 325mg, but we usually only get around 300 at best. I had no idea! That is a difficult number. Thank You Lord that we have access to low protein foods to help our kids out. We are so blessed!
Thank you guys for sharing...and thanks for being so inspiring!
Thank you for posting and sharing your ups and downs with PKU - especially when it comes to food! My daughter is only 6 months old, just starting solids and I feel judged by everyone when it comes to feeding her. I try to be gracious and explain PKU but most of the time I get that glazed over look from people! Regardless, if I too have to eat the skins off chic fil a fries one day you bet I will!
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