Sunday, December 18, 2011

It is late at night, and I've been up since impossibly early this morning. For some reason, I can't seem to fall asleep. The hum of Ellie's bipap machine is annoying me, and she is restless tonight. Jason is sleeping in what will probably never be "her" room, and Jakob is snug in his bed, fast asleep.

Today was a big day. Today was Ellie's baptism. Our family isn't particularly religious. What I mean is, Jason and I very rarely go to church. I was raised a Lutheran, and I hold sacred a lot of the traditions from my upbringing, like going to church on Easter and at Christmas, in celebration of marriage, birth and death. I am a deeply spiritual person, and while I have some issues with religion, I do believe in a higher being, and I believe that we are here for a reason. I don't really believe in chance, but I do believe we get what we can handle, and not a bit more.

I was incredibly proud today, to have my daughter experience this ritual, and become part of a bigger family. I was touched by the turn out, so many people attended, so many of our friends came, and it warmed my heart.

Today I felt joy in knowing the people we surround ourselves with, are the people who support us, and love us, regardless of anything else. Today I felt the love, and open hearts of everyone who came to support Ellie.

I thought I knew a lot about the world, about people, when I had Jakob. It's a wonder how much children teach us about ourselves, and about others. When Ellie was born, I realized just how much I have yet to learn.

Ellie has a gift. She has the ability to draw everyone in. I have yet to meet a person who has seen her, held her, and not fallen hopelessly in love with her. In the ICU, I barely had a chance to hold her, she was too busy doing rounds with the nurses, being passed from doctor to doctor, not because she was sick, but because she brings calm, and joy, and love to people when they need it. She causes people to take the time to notice how lovely she is.

We were out shopping the other day, the kids and I. I knew I wouldn't be able to push a stroller and watch Jakob, and shop at the same time, so I asked, at three different shops, if the teller would watch Ellie for me, while Jakob and I shopped. At each shop, she would draw a crowd. Store employees would compete for who got to look after her, versus serving other customers. I know, other babies probably also get that reaction, but people remember Ellie. Everywhere I go in town, I have someone tell me they recognize her, they know about her, they've ready about her, or they've heard about her.

The majority of people are so positive. People often ask why she is so little, and are open to talking about PWS and what it means for us. If I'm inclined to be gracious, as I've been trying more often to be, I will go into as much detail as the person asking would like. I've had half hour conversations with strangers about the struggles my baby will face, and yet I'm not afraid of the future. I know Ellie will be fine.

What saddens me, and what I don't understand, is why there are people who won't let her in. There are people who used to feature heavily in our lives, until we got her diagnosis, until someone said "She's different". People who have never asked to meet her, who stopped calling, who just disappeared. Maybe they're scared, or maybe they don't know what to say and they feel awkward. I don't know, I can't explain it.

What difference does it make if Ellie is missing a couple chromosomes?

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