Wednesday, October 27, 2010

Prader Willi Syndrome - the ironic illness

First, failure to thrive... then thriving "too well"

First, inability to eat anything at all... then the desire to eat anything and everything, literally

Low muscle tone, extremely slow metabolism... and insatiable hunger.

How cruel is that? I've been told that she will only need half the calories of a normal adult when she matures, and will need to exercise at least an hour a day to maintain a healthy weight without becoming obese.

Now, I set a timer and check the clock to feed her because she never cries to be fed or shows any signs of hunger. In the future, I will set a timer and check the clock to feed her because she will be so hungry she will need to feel secure about when and where her next snack or meal is coming from.

So imagine that you are physically exhausted (because you don't have as much lean muscle mass) and starving to death while your body is processing the food ever so slowly. Every movement you make is an extreme effort - almost as if gravity is fighting against you, yet you still make yourself move rigorously at least an hour a day.

Your hunger gnaws at your insides in that sharp, uncomfortable physical pain. Everywhere you go you are presented with food that you can't eat - at playdates, church, the doctor's office, a friend's house, the grocery store, a restaurant, fall festivals, farmers markets, days in the park. People are constantly offering food as a form of hospitality and community and saying to your parents, "Just this one little bite won't hurt him!" or "It's only one piece of candy!"

You never say no because you want it so badly, hoping just this once your hunger goes away. Your parents say no over and over and over and over again to everyone around you as they offer food you can't have because calorie by calorie, it adds up frightenly quickly. You want to join in as the other kids eat, and have fun. Your siblings begin to have an unhealthy relationship with food as they try not to eat in front of you - they NEED those extra calories. Sometimes your siblings will even hide food to eat in order not to eat in front of you.

All the while, the hunger is growing and crawling and banging at your insides, growling and screaming at you.

All the while you are expected to be social, to smile, to get along well with others, to have the willpower and self discipline to turn away cheerfully when you are told you can't have any more food for that meal or snack.

Remember the hungriest you have ever been in your life - maybe a long day on the road, a busy day at work missing breakfast and lunch, perhaps a day or two of deliberate fasting and prayer. Imagine feeling that way every second of every minute of every day for the rest of your life.

This is what Olivia will be fighting against. I hope you fight with us in your prayers, your advocacy, but most of all, your acceptance of her struggles. She's a sweet little baby girl who will one day just want to be loved and included just like everyone else.

5 comments:

Cori said...

Your words brought tears to my eyes. Olivia is sooo lucky to have a Mommy who is fighting for her every step of the way.

Christina K said...

Laurie- She is beautiful girl that will grow to be an amazing woman. She is very lucky to have a wonderful caring mother that will never back down and will fight for all that is right for her

Mandy said...

Wow. You really are a great writer, just like your brother. I am so sad that Olivia has to ever feel this way :( She and you have our support, always.

Jennifer K. said...

Hi, so glad I stumbled upon your blog. Sending love and support and positive vibes. My son Nolan, age 7, has PWS.

Anonymous said...

Laurie you are a wonderful wife to my brother and a great mom to my nieces. We are all so lucky to have u in our lives. I know that with all of the prayer,family and just you as her mother Olivia will grow up the only way she should. I know we will all stand behind her and you forever.May the Lord continue to give you the strength and patience that you already have. I love you more than you know. God Bless.