Heavy Heart

The events of the last week have weighed heavily on my heart. I can’t help but feel solidarity for the families and friends who have lost loved ones, especially children. This is not a political space and I don’t plan to make it one, but my heart feels heavy. I’ve been thinking a lot about Millie and it has struck me many times over how fortunate we were to be able to say goodbye. To spend the last weeks and days with her in places she loved, surrounded by people she loved. We read our favorite stories, played our favorite songs, walked in the sun, and held her close. Millie knew she was loved; she knew she was safe. Beyond that I’m not sure what she knew, but I’m so grateful that we were able to give her that at the end.

No one should have to lose a child. My heart aches for the families who weren’t able to say goodbye, weren’t able to wrap their babies in love and safety and kindness as they took their last breaths.

I wrote the blog post below in March of this year. And then I immediately decided not to share it, because it felt like way too much to put out into the world. Rereading it now, I’m crying. A lot. So… fair warning? I’m not sure if this is the right thing, but I don’t want anyone to wonder if Millie was in pain, or alone, or terrified. So, if you’re up for it, grab some tissues and read on. Or don’t, I really won’t be offended. Maybe it just feels right to share the story of a peaceful ending, rather than the brutal chaos others are dealing with right now.

Last March, we had a scheduled visit with our RN and social worker from Coastal Kids (who, in my mind, were really just the support system for our angel of a CNA. Love you, Andi). Millie had been fading fast, and we all knew it. Millie died last year on March 23, and with our one year quickly approaching, I keep replaying moments of those last few weeks in my mind. This visit from Coastal Kids sticks out as a big turning point; but in reality it was only about a week from the end. We had already turned the corners, or passed the points, or whatever metaphor works best.

We had Millie’s cocktail of meds dialed in, and during this visit she was very relaxed; dozing in and out of sleep as the nurses examined and the adults chatted. We were in the front yard, as the pandemic was still in full swing, but it was a mild, sunny day. The breeze was brisk and still felt like winter, but the sun was warm and felt more like spring: the brutal promise of a new beginning as a too-short chapter was unfairly coming to a close.

After a long exam, the nurse stood up and gave me that look. If you know that look, you know. And if you don’t, I hope that you never will. It’s a look of sadness, of pity, of hurt; but more than anything, it’s a look of finality. I don’t remember what she told me, but it was something final. Millie’s organs were shutting down. We could continue her feeding schedule and keep her with us for a few more weeks, maybe a month. Or we could start (continue?) the process of letting her go. Keep her comfortable, keep her home, let her feel loved, let her body end it’s cruel journey with less medical interventions. We chose the less is more route, knowing that we likely had less than a week with our beautiful baby girl.

The rest of the visit was a blur. I think it was mostly details that I couldn’t be bothered with: funeral arrangements, medication schedules, general “what-to-do” information. I can honestly say that all I got out of that part of the visit was this: “Call Andrea” (Who I now affectionately call Andi. Once again: love you, Andi!).

I remember them talking. I remember hearing words that didn’t mean anything. I remember watching Millie’s face, seeing her sleep so peacefully, as the details of the end of her life were sorted out. The cool breeze lifted her curls; she sighed deeply, contentedly. As everyone was leaving, she opened her eyes. I watched as she scanned their faces, then settled on me. Those larger than life green eyes were clear, and comfortable, and ready. More ready than I ever was, probably more ready than I will ever be. I remember feeling like those eyes, that soul, knew everything. She knew the secrets of the world, but she couldn’t share them. She knew what was coming, but couldn’t change it. She knew how much it was all going to hurt me, but she couldn’t help me. Millie had made peace with her life in those last moments of clarity, but I couldn’t do the same. I still can’t, but I’m trying. For her, for Nate, for Justin. For me.

As the last weeks turned to last days, last hours, last minutes, I held onto that feeling. That Millie knew, that she had accepted it. Was ready for it, maybe even wanted it. I’ll never forget sitting with her on the front porch, in the rocking chair by the fire, laying with her in bed in that last week. There were a few more moments of clarity where she opened her eyes and seemed to stare straight into my soul. Past my mind, past my heart, right to the part of me that defies logic and pain and guilt and sorrow and knows the truth: She was ready. I loved her, and she loved me, and sometimes that’s all there is. It never feels like it’s enough when you’re the one left, but in her way, Millie tried to tell me it was enough for her. She was surrounded by love and I’m so grateful that we could all give her that, from near and far. She loved us, and we loved her.