Hunger

This is by far the hardest post for me to write.  

Hunger

This is what makes my heart break into a million pieces.  "One day, your child will feel extreme, insatiable, hunger.  All day.  Every day.  She will never feel full."  I've thought about this moment many times in my head, and it is a dark, dark place.  I often find myself thinking about it when I hear people say, " I'm starving!"  "Man, I'm hungry."  "Oh, I'm stuffed and so full."  "She's a good eater."  These are all very common statements, but for a parent who has a child with PWS, they will always sting and hurt.  I think what makes it so hard, is that these are typical, everyday comments, that I totally took for granted, until Ellie was born.

And as a mother, from the moment your child comes into your life, your sole purpose is to take care of your child.  Feeding them when they are hungry, is such a critical part of being a mother. I feel like in many ways I am not able to provide for Ellie in the most important way a mother should...to feed my baby.  It kills me.  I hate how food is a comforter.  I hate how it inundates our society, fills our holidays, is used for rewards, and is everywhere.  

"The symptoms of Prader-Willi syndrome are thought to be caused by dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, sleep-wake balance, fluid balance, emotions, and fertility.An unregulated appetite characterizes the second stage of PWS. This stage most commonly begins between ages 2 and 8 years old. Individuals with PWS lack normal hunger and satiety cues. They usually are not able to control their food intake and will overeat if not closely monitored. Food seeking behaviors are very common. In addition, the metabolic rate of persons with PWS is lower than normal. Left untreated, this combination of problems leads to morbid obesity and its many complications" (http://www.fpwr.org/about-prader-willi-syndrome/).

PWS is such a cruel, cruel genetic disorder.  From the moment Ellie entered the word, she struggled to eat.  She couldn't nurse, and exerted so much energy to eat 42 mLs (her goal amount to feed by mouth).  Her little body took 30-45 minutes to drink this, and she was utterly exhausted afterward.  You could not just put a bottle in her mouth and expect her to drink...we had to hold her cheeks, support her jaw, tap the bottle, spin the bottle, tickle her feet, crank her arm. Exhausting...for her and us.  And then, after we have worked so, so hard to make sure she eats, when she is older, we will have to restrict and limit everything she eats.  We will have to lock refrigerators, pantries, trash cans, and monitor every bit of food and drink she has.  Birthday parties will be different, going to friend's houses will be different, treats will be different, many things will be different.  It's wrong, it hurts, it's not fair, it makes me angry and sad.  It makes me ask, "Why?"  

Then I look at my precious angel.  She is perfect, exactly as God made her.  So, my question should really be, "Why, not?"

Ellie may have PWS, but PWS does not have her, or her family!

We will move forward, work longer, pray harder, love deeper, and be her biggest advocate.