Moms Without Blogs has moved!

You will be automatically redirected to the new address. If that does not occur, visit
and update your bookmarks.

Wednesday, April 29, 2009

Not Like Mama Used to Make.

Written by Em

When announcing our first pregnancy, we were given the usual reality checks - a baby changes everything, blah, blah, blah. Less sleep and personal hygiene versus more love and joy.

Got it.

We received the same reminders during our wait for Baby #2, just jacked up a notch - "whoa, you guys think one is a handful, ha, ha?! You ain't seen nothin' yet!"



But boy were they right.

Turns out, Youngest has this pesky liver disorder called PKU. If you're a regular viewer of my homebase, you might be a little familiar with this three-letter combo. If not, here's a crash course - think vegetarian diabetic. Youngest is missing the necessary enzyme to metabolize the amino acid phenylalanine to the amino acid tyrosine. It just means he has to be on a special low protein diet, for life. (
Here's more information, if you're interested.) We do a blood test every other week to check his "levels." If they stay within range, he's right as rain. If we wander too far into the dark side, permanent side effects, such as brain damage, set in.

Quite the balancing act, but after three years, it's pretty routine and fully (mostly) embraced.

Until we hit a holiday.

I then loathe PKU.

I mean, bang-my-fists, stomp-my-feet and curse-the-gods kind of hatred.

What's Thanksgiving without a succulent, golden turkey (can you smell it)? Christmas without a rare roastbeast and Yorkshire pudding (yes, English family roots)? Easter without a Honeybaked ham or hollow chocolate bunnies, for Pete's sake?!

I can tell you, because I've experienced them all. And yes, I will confess, only to you guys, that it totally sucks. I will never, ever say that to Youngest (I imagine some kid in preschool will probably point it out for me), but yes, it totally sucks.

But so does decreased mental capabilities.

Perspective is key.

There are two schools of thought when it comes to holiday management of the diet: One - incorporate low protein recipes into the day (we lean this way when extended family is involved), or Two - completely change the tradition.

We love to completely change the tradition.

Not that we don't fully appreciate the fact that one day Youngest will have to "mainstream" when it comes to food, but we feel like offering him full acceptance at home builds confidence to stick to the diet later in life. At least I pray that it does.

Lord only knows how bad I'm screwing this up.

So instead of the usual chocolate selection at Halloween, it's now Skittles, Dum Dums or pencils. For Easter this year, we held a jelly bean hunt, and for dinner we grilled veggies and turkey hotdogs (and a lo pro version for Youngest - yes they make them) and had a picnic outside watching the sunset.

Not a pork product or deviled egg in site.

I cannot truthfully say that I don't miss the traditional fare. Those meals were my childhood memories. Believe me, my mother reminds me all the time. I actually lied to her this year and told her that yes, I bought a ham for the rest of us since that's how it's done.

Enough! (that's for my mom)

This is Youngest's childhood now, so he gets to help pick the menu.

When we went for our initial genetics counseling right after his diagnosis, the wonderful dietitian let me in on a little secret that has sustained me during my many closet tantrums.

"It's not the food on the table that matters, it's the people surrounding it."

And there's always girls' night out for wallowing around in chicken fried steak.

What can I say? I'm hardly a saint.


  1. It must be an amazingly difficult thing to live with, and explain to a young child. And you are absolutely right, perspective is key.

    But now I know he can have skittles and Jelly Beans, I am full of happiness and optimism for you and your family. For I, too, have lived on Jelly Beans for 41 years, and any mental shortcomings I may have were not caused by that rainbow-flavored life sustenance... It was the Heineken, random parental beatings, and some Afghani farmers that were responsible for those.

  2. oh girl, set an extra place at the dinner table cuz look who's comin' to dinner! i would happily share in any of your holiday traditions. and one day, your boys will be grilling turkey dogs and veggies with THEIR families, because it brings back such great memories.

    every liver in this family is in check (except mine might be at risk as i plan to start drinking heavily to escape my mounting life problems), and we LOVE to buck the system (except when a turduken is foisted on us). my boys think it is so rebellious (and they are ALL about rebellion) to come up with some crazy tradition... just for us... because we WANT to. we had Easter breakfast this year (breakfast burritos and pancakes) and then burgers for dinner. no ham. no eggs. no bunnies.

    so i guess my point is you are taking a crappy situation and making some spectacularly delicious lemonade, em! in 5 years, your boys will be sitting on the floor after an hellacious halloween romp, sorting skittles, NOT because mr. youngest has to have them instead of chocolate, BUT BECAUSE that's how it's done in the family. it's tradition.

  3. It sounds to me like you are doing things JUST RIGHT!

    We started a new Christmas Eve tradition this year - everyone gets to pick their own dinner and I will cook it. Yep, I was a short order cook for the evening and when it was over, the kiddos immediately asked "Are we going to do this again next year?"

  4. I would love to start a tradition of cooking hot dogs for Easter!!

  5. Wow that's tough. Kuddos to you for starting new traditions! Way to go:)

  6. Em...your doing a wonderful job. And even though you are frustrated, you are making sure the kids think this is all normal. Hold your head up high and know that you are awesome! And your kiddos with grow up loving the traditions you made with them.
    If your ever up East... I would go out for Chicken Fried Steak with you.

  7. I always thought tradition was a lil overrated, everyone always makes a big nothing out of something lil.
    As for those people who have to stick there two cents in, in a negative way...well screw them, it's your life not theirs. Heck I wish I had a dollar for everytime someone told me that only having one kid is pretty much a sin....i'd be able to stay home with my peanut everyday then....hang in there and a casual flip of the bird to "those" always makes the mind feel :)

  8. Sounds to me like you all handle things really well. After all, what is normal, if it's not what we each live everyday. This is just your normal.

    Now, may I have that chicken fried steak please? I've already polished off a bag of microwave popcorn (trying to pretend it was steak and eggs), but I'm still hungry.
    You do deliver, right?

  9. I think it's great to buck the system.....who really likes turkey and dressing, sweet potato casserole, or pumpkin pie anyway?

    My sister's 2 year old son has sever food allergies (milk, eggs, nuts, pork, citrus) so she is changing up the traditional holiday meals.....and what he can eat is so much healthier!

  10. You already know how much I idolize your mothering abilities, but I will add that traditions are what you and your kids have, with a little bit of what you grew up with sprinkled in. That girl is right- it's what is surrounding the table that matters. And okay okay, we can do chicken fry. The sacrifices I make....heh

  11. I am so impressed with your mothering skills and adaptability. But question...there is protein in chocolate?

  12. Pseudo - you'd be surprised what has protein!

    1 oz. serving of Hershey Kisses = 3 grams

    When you're only allowed 6 -7 grams/day, it adds up pretty fast.

    And seriously, who only eats 1 oz of Hershey Kisses?!

    There are incredible companies that do make low-protein chocolate alternatives, but until he can grasp the difference in "his" chocolate vs. regular chocolate, I have yet to make that investment. That stuff ain't cheap!

    Thanks to all for your nice comments. It felt good to get the rant out - PKU does totally suck, but oh, how we know it could be so much worse.

  13. i love what your dietitian said, it is the perfect sentiment to all that is family. despite the fact that food holds so many memories {tastes, smells, textures} the togetherness is what really matters. i love the way you are dealing with pku as a family, it is beautiful.

  14. Thanks for sharing this part of your life, Em - my heart goes out to your little guy. But you know what? The beauty of what you've set up for him and the sacrifices your family has made for him makes him none the wiser. Great job for putting his psyche and well-being number one - your unusual is his normal and he's loved, supported and happy becomes of it.

  15. How wonderful you are. Not to belittle the hard parts, but YAY for making your own family traditions! It sounds like you have a wonderful family and your son will have great support when everyone else's family traditions make themselves known, he probably won't even care.
    We like to make up our own stuff too...much more fun that way!

  16. that is awesome. totally change the tradition and make it fun. you rock!

  17. That is seriously tricky stuff. I don't know, I think it's really really hard to have health issues around food. It's kind of a big part of life, sheesh. You're an amazing mom. I'm sure you do have tantrums, since you SHOULD, but you seem to have an amazing perspective on this. And so will he.

  18. Em, I completely understand. My son doesn't have PKU, but he has peanut and tree nut allergies and having to avoid anything in your diet changes everything. Especially when it's not to lose weight, but a major health issue!

    I praise you for making the changes for your whole family. One day your son will be able to understand much better and he'll manage his diet without having to have everyone change theirs, but in the meantime kudos to you for being a great mommy.

    Doesn't it stink when people question your decisions, like they can completely understand what you're going through?

  19. I have as I have said before an amazing amount of respect for your ability to find perspective and deal with such a situation. I love skittles. Are smarties on the menu as well? You Rock Mommy Em!!

  20. the alternative to low protien diet is worse than spaghetti for christmas.

    sounds like you are trying to make everything as fun for the kids as possible despite the nasty PKU.

  21. Way to go Em! I think you are doing an amazing job and are an inspiration for all of us.

    You are Youngest's mom for a reason. God made the perfect pick.

  22. Amy, thanks so much!! I had to giggle with combining Swizz's and your comment - Swizz, my Oldest has peanut, whey and egg allergies. After Youngest was diagnosed with PKU, Hubs and I started referring to Oldest as "God's little experiment." He saw that we could keep one kid alive by paying attention to diet, He figured would could handle PKU. The food allergies actually help, believe it or not. Oldest is extremely understanding when it comes to Youngest's strict diet, I think in part because he has to deal with it on a certain level as well.

    To me, they are proof that there truly is a bigger plan, you know, besides just being some of the most adorable, loving boys on the planet :-)

  23. I think that putting together new traditions is special in so many more ways than sticking to the old ones. Parenthood sounds tough, but seems like you are a darling at it!

  24. All I can "do" is give you a pat on the back and a little hug and tell you that you are a great mom. You really are.

  25. I love the change up! I do not like turkey.I think it stems from having a carcass on the table-can't do it. SO, from early on I would eat with my great grandmother something "Special" my mother would make. Often it was meatloaf- oneof our faves. I loved having something cool and different. And you know what?My Moe has been dead now for 5 years,but I still make my mini meatloaf and have it myself. This year my girls joined me ( at their request) over eating turkey.

  26.'re not a saint????

    Jeez. All this time...

    Ah, never mind. I still love ya ....


  27. Oh Em, I'm not gonna praise you as a mother because well, I hope you already know how I feel about you in this category...or maybe you don't. But you know that I think you are the real deal and you bring all of that into your mothering obviously - you are so intelligent and conscientious and of course you would handle being handed PKU with this kind of thoroughness and care.

    What I love most about this post is your admission that it's tough sometimes. That you loathe it sometimes and that you want to stomp your feet about it sometimes....I think that's how I would feel. I just love knowing that although inside it may tear at you sometimes, you CHOOSE to handle it with grace and set the tone for your kids that "this is how we do it." No drama, no freak-outs, it's just us and this is our scene.

    And of course i totally agree with the statement that it's not about the food but about the people around the table. Amen.

    And you rule.


  28. It IS all about perspective, Em. And I'd say your perspective is pretty damn good.

    Youngest is lucky to have you for a mama...



Related Posts with Thumbnails
Blog Designed by : NW Designs