PKU: All the things they can't eat

I watch an email list focused on PKU (parents, kids, PKU adults, etc).  A great deal of the messages ask for technical answers about how many PHE's are in this or that or what do if this or that occurs.  But fairly regularly someone sends a message out for simple help.  Here is one from today...

Hi everyone;
 
I bring my 22 month old daughter to a babysitter for the afternoons, and I would like to start sending her over with dinner since she isn't picked up until after 6pm.  I usually just send her over with an afternoon snack, but the sitter told me today she would have no problem feeding my daughter dinner, and since they usually sit down to eat at her house around 4:30 or 5, I think this would be better for my daughter...  Since my daughter isn't 2 yet, I'm still learning myself what I can give her for meals, and I'm nervous about leaving it to someone other than my husband or myself to feed her. I would love some imput or suggestions about this.  I haven't ordered any low-pro foods yet, and to be honest I have no idea how to go about doing so.  And is ordering from Cambrooke, etc something that all PKU parents do right away?  I feel like I have SO much more to learn about meal options, etc and I would truly appreciate any advice you could give me.
 
I have to admit, when my babysitter pulled me aside this afternoon and started telling me about how my daughter wants a banana or other foods the other kids are eating, she said it was "so sad" that she couldn't give her some.  My daughter has a very low tolerance, and I made it clear to her from the beginning that she was only to feed her the foods I brought over that day.  I know for people who don't have to regularly deal with PKU it's hard to comprehend, but I've done all the explaining I can to her about what I know.   To be completely honest, I felt very inadequate as a mother after this conversation, and I broke down as soon as I closed the door behind me.  I wonder sometimes if I'm doing all I can do for my daughter...  I knew this day would come, and I (or someone else) would feel so terrible that my daughter can't eat what the other kids are having, and I know she is still too young to understand why, but it breaks my heart.
 
I'm so sorry for going on and on, I just didn't have anyone else to talk to who might know what I'm feeling, and although I don't write too often on the listserv, I read each and every post daily, and I appreciate how much you have all educated me and helped me through so far.  I've gotten so many tips, and had so many laughs, I've been angry, and I've been scared, etc about what is to come, but it's all SO helpful.  I'm so grateful for the listserv, and all of you.
 
Thanks for listening, and thanks in advance to any feedback I might recieve.
I'm sure it'll get easier...my mother tells me to take this one step at a time, but this is a step I don't think I was quite ready to make just yet.  Are PKU moms and dads ever ready?

I chose to answer this one...

Hang in there!

 

It is easy to look at what your daughter can't eat and feel saddened by the things missed... but you have to remember that it is just food.  There are many, many great joys in life yet to be had.  You look at some of the treats she can't have and you have your own memories of these foods.  You perceive these treats much differently than she does.  She has never experienced a twinky and probably never will.  A chunk of why you may remember a twinky fondly is because you remember your mom giving them to you with big hugs while you cuddled on the couch and watched cartoons.  But can you see where half of that association comes from? Cuddling with mom on the couch with cartoons!  That's the real joy.  You can substitute a rice kispy treat covered in frosting for the Twinky and the experience is much the same.  She can develop her own associations and favorite foods from the still large selection of things she can have.  Not one measure of happiness is lost.

 

~Curtis

 

She then replied...

 

Curtis,
 
I have to tell you, I've already gotten about 10 responses, but yours was the one that made me stop and think.  You left me speechless, but I want you to know the positive impact you've just had on me, and I will never forget your words of wisdom.  I'm forever grateful....
 
Jenn 
 
(ps I might have to print this one out and stick it in my wallet for years-to-come of reassurance)

I have already replied to Jenn, but I wanted to capture it here too.  Rarely have I felt this proud about something I've done.  It was just a simple note.  But I am glad it helped this one mom and her daughter.  I don't know that I could say who helped who more today.