Thursday, May 21, 2009

Today's version of a daily conversation

Ruby: Mom, I'm really hungry.

Me: I know sweetie. But you just ate lunch. (about 1/2 hour ago.)

Ruby: Guess what!? We made pizza for snack at school! Not like pizza store pizza, but with a circle kind of bread. I put cheese, then sauce, then more cheese and more sauce. I made two layers!

Me: That sounds good. (calm but mentally berating myself for packing big lunches when they eat these high calorie snacks at preschool)

Ruby: And you know, we also went to the "blue room" and ate honey. I got two pretzels with honey. Not everyone got two, but I did.

Me: Hmmm. (acting neutral)

Ruby: Where are we going now?

Me: Just to the grocery store to get some things for dinner.

Ruby: What's for dinner?

Me: I think we'll have salad and bread.

Ruby: I LOVE bread. Can we have bread with thick cheese spread all over?

Me: No, not tonight, just regular bread with our salad.

Ruby: What's in the salad?

Me: Roo! (I lost my patience) Dinner is still 5 hours away! (I take a deep breath.) You don't need to worry about dinner, sweetie. I'm the mom and I can take care of the food.

Ruby: Well, when I'm a mom and I have babies I'm gonna...

Me: Gonna what, sweetie? (I'm calm again)

Ruby: I'm gonna live far away. (but she's not calm. she's hurt) I'm gonna live next to GrandMary and Grandpa (in NJ).

Me: Oh, ok. (i'm striving for unfazed)

Ruby: I'm not going to live near you.

Me: Hmmmm. (I heard somewhere that saying "Hmmm" a lot keeps kids talking)

Ruby: Can you drive me there?

At that point I burst out laughing. And poor Roo was so mad, so ashamed. She hid her face in her sleeve and wouldn't look at me. I told her I was laughing because when Daddy and I drove from NJ to CA it took us five full days. (It did take us 5 days, but of course that's not what was funny) She knew I was lying. Now I felt bad.

Ruby is always talking about food. I don't know if she is really experiencing hunger all the time or if she is just tuned into the PWS food vibe in our house. Did she learn to drink her salad dressing by copying Oscar or is she also programmed to do that?

I didn't think too much of Ruby's voracious appetite until two years ago when her linear growth slowed and her weight increased. She went from 75% height/50% weight to 35% height/95% weight. And she's stayed right around there..despite a lot of very healthy portion-controlled eating and not much access to dessert or sweets.

The hunger plus the slowed growth and metabolism just sound too much like PWS to me (it's not, we checked) and therefore gets me at my weakest place. All those horrible stories that I read in the NICU when Oscar was born about kids with PWS and the lengths they will go to for food come rushing back.

The literature made kids with PWS seem like monsters.

Eating frozen meat, digging through garbage cans for rotten leftovers, prostituting to earn money for food...

I know differently now, but I can't quite shake the images or the fears. So when Ruby perseverates about food more than her brother who actually has PWS, and we don't know why, I feel the uncertainty and fear rush in again.

I was researching her metabolism and appetite last February when one of her top baby teeth became loose. She'd already lost the bottom two. I asked the dentist if she knew of anything that could cause both premature tooth loss and metabolic issues. That's when we learned about hypophosphatasia -- we discovered the HPP while looking for something to explain her hunger and metabolism. The symptoms aren't, as it turns out, related. HPP might help explain the slowed linear growth, and certainly the lost teeth, but most kids with HPP are super picky eaters and parents in the yahoo group share ideas about how to help their kids gain weight.

Ironically, because we have a child with PWS we think we know what to do about Ruby's obsessive hunger....and yet we really don't. Ruby will live independently in the world and make her own choices about food someday. Oscar will never be in control of his food. As well as he is doing, uncontrolled access to food will put him at serious medical risk and only heighten his anxiety and behavioral challenges. But that's not the case for Ruby. At least I hope not.

So how do I raise her in this Prader-Willi household? I'm concerned about the food issues she might develop because I am restricting her now. But at four she is too young to make all the decisions.

And my gut tells me there is an imbalance of some sort causing her hunger but I don't know how to chase it down.

Meanwhile, I am saying "yes" whenever I can. I sometimes give her small treats when Oscar isn't around. I'm trying to be patient. And I'm always talking about how all of our bodies are unique and we all need different things. "Oscar's body doesn't know when he is full so I help him. Your body can tell you when you are full. You don't need to finish your food if you are full. We can save it for later." I congratulate her on good choices.

I'm doing the best I can but I wish there was someone out there that could help me navigate this tricky area.

At bedtime tonight she was cuddly and asking for lots of hugs and kisses and trying to keep me in her room as long as possible. We play the "Guess How Much I Love You" game a lot, each of us trying to outdo the other. Tonight I went with silly and said "I love you all the armpits in the world". (I know, that doesn't make sense, but we giggled hysterically anyway).

And then she said, "I love you all the way to GrandMary and Grandpa's...and back".

In these moments, the concern melts away and, with love as my guide, I trust that she will be okay.


  1. Wow. This is such a great post -- I feel so bewildered by what you're going through and can't imagine how frustrating and wild it must be to have to deal with something as mundane as food and un-mundane (is that a word?) as Prader-Willi. You are such a great mother, so filled with love.

  2. "Ruby: Can you drive me there?" Oh that made me laugh because I am getting the "Where's Grandma" business all the time now. Most of it when I don't give into Gabe.

    You have such a great way of writing, and I'm learning a lot from your blog.

    You know, sometimes I think there is a big myth machine out there pumping all the wrong images of "feeding our kids". If we're not fighting junk food and peer pressure, we're busy berating ourselves because our kids don't eat enough or they eat too much.

    Feeding our kids is HARD work, IMO.

    Anyway, kudos for you and all the armpits in the world! I loved your last line and it made me smile and tear up!♥

  3. Thank you for sharing this. It sounds as if you are navigating these waters with love and grace. God bless each one of you!