She Will Amaze You

I talked to my mom this morning, and she was upset. She'd gotten an email from the Foundation, and in it was a YouTube video about PWS. I haven't watched it, although three copies of that same email are sitting in my inbox. The way these videos are presented, remind me why I don't like being involved in "official" PWS stuff. It's so depressing. Everyone's experiences, all their stories are completely pessimistic. I'm not sure if that's because they want to make people feel so badly for our kids, that they open up their wallets, or what. It is an approach I detest.

Our kids face challenges, that is undeniable. But to focus on those disadvantages, to paint a bleak picture of their future, I don't like it. Our kids don't know they are different, they don't know they have these poor outlooks. And, I truly believe that if you believe in them, and you support them, and provide them the structure, and proper, safe environment to grow up, they will be just fine.

Doctors told us that Ellie would take two years to eat on her own. She started bottle feeds at 2 months adjusted. They told us she would be very weak, hypotonic, not sitting until she was a year. She started sitting at 6 months adjusted, at the same time as her big brother. They say all these awful things about what you should expect, that the food seeking is going to be unmanageable, that your life is going to revolve around this disorder, that it will become our lives.

A few choice words come up when I think about this, when I think about how probably everyone who donated last year is being sent that email. NEVER underestimate my baby girl. She is just as capable as any other baby. She is a normal baby. She laughs, loves, cuddles, eats, rolls, sits. She has PWS, but it does NOT define her. It does not define our lives.

My opinions aren't popular with a lot of the community. I know they think "you just wait until you're in our shoes". Here's the thing, my daughter will never be overweight. It just isn't going to happen. Our family is active, together, and together as a family we will all be responsible to each other. Food? Put it out of sight, have strict rules around when it is available, around what is available. Don't feed your kids crap. That goes for every child. Almost anyone will say they want sugar, when it's offered. Just don't make it available! If the food isn't an issue, meaning it isn't there to occupy Ellie's mind, we can provide lots of activities to keep her busy, to help her learn, to help her be just like any other kid.

Hunger is hard to quantify. I'm hungry right now, I haven't eaten breakfast. I know that when I eat, I will feel better. People with PWS never feel full, so what does their hunger feel like? I think if Ellie never remembers any other feeling than being hungry, it will be her normal, and really won't be a big deal unless people make a big deal of it.

I have had a lot of people comment on how well-behaved Jakob is. My three year old, who sailed through the terrible two's rather terrifically. I'll take credit for that. He isn't always so easy to get along with, he is a little boy trying to find his place, trying to push our boundaries. I am firm, I am consistent, I reinforce good manners, and put him in time out for misbehaving. I love him unconditionally, and he knows that. A lot of how a child turns out depends on how they were raised.

They say it takes a village to raise a child. It could not be more true. I just hope our village, those people who have an active role in raising Ellie, treat her like she is normal. Don't make a big deal about her issues, everyone has issues. Labels are pretty unnecessary.

Yes, Ellie has PWS, and yes, of course, I want them to find a cure, or better treatments. But, PWS is most certainly not the end of the world. Ellie will be perfect.