Having Her... Without Having Her

I have been feeling quite conflicted lately. Yesterday, I had a chat with some of the staff at South Davis about that really awful day almost exactly one year ago (November 21st, a date I remember well). It's hard to put to words how overwhelmingly thankful I am that she was brought back that day. We all fought so hard, and were really fortunate that we were on the winning end of that battle. But truly, something inside me knew that it wasn't her time. But of course, perhaps that could have been denial of the reality of the situation. I've now become semi-obsessed with recounts of near death experiences. Did she see me crying in the hallway? Did she see Harper anxious to get as far away from the situation as possible? Did she see her daddy doing his best while being pulled in all sorts of directions? Did she see the staff at South Davis, furiously doing chest compressions while bagging her? How much did she understand at not even four months old? Does it even matter when it comes to one's soul? As a strongly agnostic person without any religious ties, it is tough for me to reconcile science, spirituality, and reality.

My heart is conflicted about how thankful I am that I can go see her anytime I want when I miss her, with the anguish that comes with being so close yet so far away. We live separate lives. We don't get to be together for every little thing. As she gets older, it gets harder. There is nothing that makes me both happier and sadder than seeing how excited she is when Jeff and I step through her door. I just know that she's been waiting all day for us, wondering when we would finally arrive. She wants to play. She wants to cuddle. And we have to cram it all into a short period of time. We have her, without having her. It is never enough time. When we have to say goodbye, I always walk away with a sad, lonely feeling in my heart. Every day. The worst part of it now is that I recognize the same thing in her eyes, too. She hates when we leave. I'm not sure if she understands why we aren't together, and that kills me. I can feel that she is hurting, too. But she is so much stronger than I am. She doesn't cry. But that might make it even more sad. This separation is all she knows.

Norah is so smart, and so aware of everything and everyone around her. She's always been that way, even at just a few days old. And others comment on what an old soul she is. But in some ways, it works to her detriment. If ignorance is bliss, what does that make intelligence? How much longer will we have to wait to be together? Will she be walking and talking by the time that happens? Will she be going to school? Will she be a grown adult? Okay, I know that she'll be coming home sooner than that, but sometimes it feels like the day she comes home to stay is a lifetime away. When she was first trach'd, no one would have ever guessed that she would still be living in the hospital at fifteen months old. So what does that mean for the future? My patience meter is running on empty these days, and it has got me really emotional. Some days I feel so on top of everything, and other days are just a tear-fest.


But we keep going. We keep going because we don't have any other choice. Our situation is only as hard as we make it. We could be like most of the other parents of the kids at South Davis (though there are some exceptions), and just resolve ourselves to the fact that she lives there. They rarely visit, and it breaks my heart. So of course we can't do that. We go every day because there is no other way. She is our family, and we do everything we can to give her the best life possible. So we keep on going. We may not like it, but we know that we can do hard things. The last fifteen months proves it.

Harper's first carousel ride at the Zoo. We try to do special
things with him so he doesn't feel like he has too much
of a bum deal. 

After going to the zoo, we wanted to go back for
a second visit with Norah, especially so she could
play with the little monkey we got for her. We're so glad we did.