I had to really think about it. Sean and I haven't had the time, energy, or emotional capacity to spare to really consider ourselves in the last few months. I guess I can't truly answer for him but I am fairly confident he'll agree with me.
Obviously we aren't fine; we have a critically ill child. I overheard a nursing report the other day when Avelyn had to be reintubated. The day shift nurse discribed me as worried and in her room all the time. She said it with a negative connotation that I don't feel was appropriate. Of course the nurse doesn't have children of her own. Even so, to work in this setting she has to compartmentalize her emotions and she likely doesn't realize she does it. I get it. I compartmentalize my work too, it's the only way you can cope with such heartbreaking work day in and day out.
However, I try not to judge the family members of my patients and think all nurses should do the same. Everyone copes and handles crisis differently. Yes, I am nervous; I should be. My baby may not make it out of this hospital. Any parent in my shoes should be nervous. Yes, I rarely leave her side. Why should I? Being away and knowing she's struggling is harder than being present for it. While I believe more than anyone Avelyn will turn around, do well, and live a long happy life- I also know she is very very sick. There is a chance that this may be the only time I get with her. I don't ever want to look back and think I could've spent more time with her or that I missed something.
So how am I? I am not ok. I am not fine. I struggle to make it through each day-sometimes each hour. Yet our struggle as parents pales in comparison to our baby girl's struggle. So we can't afford to fall apart. We can't afford to not handle the stress and challenges. We can't afford to lose hope. Therefore we won't fall apart. We will cope with every challenge and stressor and we will never lose hope.
Very few things in our lives are simple these days but this aspect of lives as parents of a critically ill child is. Our baby needs us. So we are here and will always be. There isn't another option. She deserves so much more than the life she was born into. We can't do much for her right now. We can't hold her to comfort her. We can't tell her it'll be better soon. We can't feed her or really even change her diaper without assistance. All we can do is give her is our stability.
It's not the parenthood I hoped for or that I would wish upon anyone. But it's all we know and it's what our baby needs from us. So for now we take each day as it comes and we survive. Our copeing isn't graceful, we often struggle but we're here and we'll continue to be. We have to. As her condition improves her needs will evolve and so too will we. It's the least we can do. She's been through too much for us to not step up to the plate and help her meet her full potential.
So, how are we? We're trying. We're struggling. But we're surviving.