The last good night.

They say that “time heals all wounds.” It doesn’t. Time changes the wounds, but they never go away. That’s how we get scars. Time isn’t a healer. Time is just…time – impartial, blind, ever moving dumbly forward.

I find myself in a land with no map. Navigating each day has become an exercise in stubbed toes, sprained ankles, aches and pains, as I try to find a way through this unknown country of pain. I look in the mirror, and I’m not sure who I am anymore. I go to work. I do my job. I smile. I make jokes. I hold the hands of my nervous students. I cook. I clean. I garden. I read to my lovely children. Time keeps moving.

I’m waiting. But I don’t know for what. Maybe I’m waiting to exhale again – to breathe out and feel the crushing weight lift.

James’s life keeps shrinking. Five months. Five months come and gone like a sigh.

What do you say about a baby that no one really knew? How do you share memories of a baby only here for 5 months? When you lose an adult or an older child, you can share those memories with others. You can look at each other, smile, say “remember when?” With James, only one other person shares that intimacy with me. Jim. No one else knew James like we did. No one else held him every single moment of his life, knew his every baby sigh and coo.

Grief is isolating. Grieving a baby is even more isolating.

Experienced loss parents told me that some of my friends would slip away – friends that I didn’t expect. I should’ve believed them, but I chose not to do so. And they were right. People that I expected to always be there for me slipped away quietly. Others that I didn’t know that well came forward, sent me cards, letters, remembrances of our son.

Still, at nine months, I feel a sense of “time to move on.” The letters and cards have tapered off. The offers of help have slowly faded away. The texts and messages are less and less frequent. I get it. The world goes on. Other children are born. Loved ones die. We are not unique in our suffering.

So the grief goes a little more underground every day. I’m out there, functioning. I’m working. I’m taking care of my children. I’m “better.” Right? Hysterical breakdowns in public aren’t allowed at this stage of grieving. That’s past. Except it’s not. Every breath I take in and every breath I let out, I feel him with me and yet gone.

I remember the last good night that we had together. It was December 27th, 2016 – the night before his tracheostomy surgery. Jim and I both spent the night with James there in the PICU. We knew that surgery carried such risk for him, and we wanted to spend that last night together. If it was his last night, we wanted it to be a good one.

As it turned out, it wasn’t his last night, but it was the last good one. It was the last one where we could freely hold our precious son. We could cradle him on our chests. We laughed and told him stories. We listened to music – music that took us both straight back to the early days of our relationship…some twenty years ago. We talked about rock climbing, our first apartment, and the life we used to live. James lay between us, half on Jim and half on me. He was awake and alert. He listened. He basked in our love.

It was a good night. It was the last good night.

I cling to that memory when I close my eyes at night and question everything all over again. When the voice tells me how miserably I failed my sweet James, I see our family that night, nestled in the bed together. I see that night. That last. good. night.


4 thoughts on “The last good night.

  1. I am sorry for your loss. You have eloquently described what we are feeling now. Our son, (15 weeks gestation currently) has been diagnosed with Full Trisomy 18 and is not expected to live longer than 4-6 weeks in utero. We are still processing that grief, but it is isolating. I know that soon the texts, the messages, the offers of help will dwindle. I experienced with my mom when she was first diagnosed with stage 4 ovarian cancer. She is still fighting, but the support has dwindled and we are all alone navigating this sea.

    Now my husband and I are navigating this strange feeling we have. Our bodies are grieving as well. We are tired, achy, weary physically. I can’t seem to move most days. Getting things done is a daily challenge. We have limited energy and time before we break down.

    I have no idea how much time we will have, but I hope to remember and cherish those moments as you have.


  2. Always so true and poignant Cat. The replay of our last good moments with Elisabeth Maxine is a tricky companion. I want the time back; I don’t want the second-guessing of what we left undone. Beautiful James. I’m so sorry we can’t have our babies forever — tucked safely between us. The time we did have was never enough. Much love as you fumble in this unwelcome world of “passed time.”


  3. I’m reading you from Santiago, Chile, in a special day…3 years ago, I lost my nephew Mateo, who was 5 months old, another Trisomy 18 warrior. It made me feel very calm to read all your feelings and get to know James. He was, and certainly is, a beautiful boy, and I will remember him when I think in Mateo. I send you and all your family a big hug. We were very lucky to have these little angels!


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