Even though I love what this time of year brings (pumpkins, 105 degree weather, etc), I’ve found myself really battling to keep my head above water for the last three Septembers. Another school year is starting, another year that Madeline isn’t with her peers. I’ve made excuses every year (It would be kindergarten! It would be her first year of all-day school!) but I just have to accept the fact that it’s going to be hard every year. Every year I will balance my excitement for Annabel and James with my sadness for Madeline. I feel like I should be better at this by now, but I have to remind myself often that it’s only been five years. It feels like a lifetime but when I look at the rest of my life stretched out before me, it’s only a blink.

I’m especially susceptible to outside influences when I’m going through a valley of grief, so I quite literally schedule time into my day to allow myself to decompress and let my mind “go there.” It sounds silly when it’s written out – that I have to schedule time to actively grieve – but if I didn’t, I would crack. I know that at the end of the day, I will be able to feel everything I’ve been pushing to the back of my mind. This lets me be present for my kids, meet my deadlines, and not get lost in flashbacks and panic attacks. I’ve been having a lot of flashbacks lately.

Over the years, I’ve been asked several times – mostly by nurses and palliative care professionals – what could have been done differently the day Madeline died. It’s one of those difficult easy questions, because I know the answer but to explain it, I am transported back to that day. The sounds, the smells…the fear…it all comes rushing back and threatens to overwhelm me. The things I saw in those three hours while they tried to save her are burned into my brain forever, and it is a daily struggle to keep them locked away deep in my mind. I stood there and watched them do insane, scary things to her tiny body and she still died. I watched her die. It was obviously as horrific as you’d expect, so horrific that it almost doesn’t feel real. But every morning when I wake up, I remember that it is real.

On the mornings where I feel like I might throw up from the weight of it all, I start employing all of my coping mechanisms. I schedule play dates so my kids can have fun and I have someone to talk to. I throw myself into party planning and focus on the tiny little details. I imagine myself on a tropical island, or in front of a fireplace, or at Disneyland or anywhere else I have happy memories with my family. I walk around with constant feelings of guilt and failure and I wish daily that I could relieve the last six years and do everything differently.

On the day Madeline died, I wish the doctors and nurses had let us hold her for her last moments. I wish I could have been holding and touching my daughter when she died instead of standing ten feet away, helpless. I wish I could have been closer to her, talking into her ear during her final breaths so the last thing she heard would have been our voices telling her how much we loved her. This could have happened for us and Madeline and it didn’t, and I am still upset about it (I have spoken with hospital personnel). I don’t like to talk about her last three hours alive but I am now with the hope that the nurses and doctors who read here can remember our experience the next time they are in this situation with a patient and family. When possible, a patient deserves to have her family there for the last moments. The family deserves it, too.