Primal scream.

Cohesive thoughts and words are eluding me. I have so many that my mind can’t rest. I can’t sleep. It’s funny how when we’re in the thick of it, we feel alone, like we’re blazing a path that no one has yet forged. Then we look down at our feet with suddenly new eyes, and we see a very well-trodden path stretching out before us. There is nothing new here. Just ordinary old grief and all of the possible manifestations of it.

I have been throwing myself into a couple of projects for the past few days. One of them is the Cuddle Cot. The one that we are donating to Mission arrived, and I’ve been trying to help get it implemented quickly. It breaks my heart to think of any parent having to hand over their baby to the hospital when they aren’t ready – or at all, if that isn’t what they want. So I feel the need to move quickly, to be aggressive, to help bereaved parents start towards healing by being able to care for their children. Death is a door, and I took my James to the threshold and held his hand until he passed through. I stayed at the door to make sure that he was honored. I was his guardian. No one was going to take that from me – the mother that brought him into this world.

The hospital has to abide by typical hospital policy and come up with a protocol for the Cuddle Cot’s use. So tonight, I put the Cot into the hands of someone that I trust implicitly. I would trust him with my life. More than that – much more, I trusted my child’s life to him. I know that if the Cot is needed before the machinery of administration starts turning, then he will make sure it is there. Maybe I didn’t realize how hard having the Cuddle Cot in the house for the last few days has been or how hard letting it go would be. At least the hands in which I placed it are kind and sympathetic to the pain. Hands that bring comfort to babies and children like James.

I’ve felt an understandable urgency to do this. Further, I am…well, I am me. Those who know me know that I am strong-willed, can be extremely persistent (some may say stubborn), and when I want something, I want it done yesterday. I am generally pretty efficient at getting something accomplished when I put my mind to it – but in this violent fervor to get things done, I sometimes get hyper-focused. I forget that I don’t have to reinvent the wheel. Patience is a virtue that I have always lacked, though I sincerely do try.

Patience in grief is essential. If you are impatient to move to the next moment of grief, you lose the current one. Grief won’t leave you. It won’t let you rest or forget. It doesn’t give you time to fully breathe. Who wouldn’t be impatient for that to pass into a gentler, more forgiving sort of grief? I am so ready to leave this raw nerve exposed pain behind me – I am so ready to remember James with a smile and joy instead of the intense, grinding sadness every day that he is gone. And yet, to be at that stage means that months have passed, and I am farther from the last day that I held my beautiful boy. My little boy – forever frozen at 5 months and 1 day old.

His pictures don’t make me cry. They make me smile. Yet, when I see other trisomy babies in my groups, and I catch a glimpse of James – in a clenched fist, in a facial expression – I feel like I am going to shatter into a million tiny fragments, all reflecting the sorrow sunk deep into my marrow.

I worry that the urgency to forge ahead is masking my grief. I am trying to help so many others that I might not be helping myself as much as I need to be right now. God knows, I am trying. If there was ever anyone that has been intentional in their grief, it is Catherine Damn Ashe. I’ve got my self-care list. I’m meditating daily. I’m seeing a counselor weekly. I’m going to a grief support meeting at the end of this month. I met with the Mountain Area Pregnancy Services to see what we can do about helping parents to plan home burials. I’m taking an SSRI. I’m getting back (slowly) to exercise. When I eat, I’m trying to eat well. No one is grieving as well as I am.

Because, don’t you know, grief is a competition.

I used to see grief as a sort of tiered cake. At the pinnacle of the cake was the grief associated with the death of your child. Within that layer, there were many flavors – losing a child to miscarriage, stillbirth, in infancy, as a teenager, as an adult. Below that was losing other close loved ones. Below that, still more losses until you reach the bottom of the cake, where the least sad griefs live.

How ridiculous now to think of grief this way. Grief is different for every single person that feels it. And we will all feel it, make no mistake. There is no “my way” or “right” way to grieve. There is no “grief Olympics.” There is only grief. It permeates every cell of your body.

I never forget. I never have that blissful moment when I wake up in the morning and for one moment forget that he is dead. His death is ingrained into my cells. As his DNA is embedded in my cells, so is the knowledge of his life here on earth and that it has ended. My body knows the deep truth of it. My soul knows the truth of it. There is no moment free of it. Even in sleep – which comes rarely these days – I know.

Grace. This is a word that I hear often. I have to give myself grace. I’m trying. I’m trying not to be hard on myself with regards to my grief. I am trying to remember that I am in the thickest part of the rawest grief. It’s okay to stumble. It’s okay if I make poor decisions on occasion. Even if it feels like I’m standing still, if I can take the birdseye view and see incremental progress forward, then I’m still doing alright. It’s okay. It’s all going to be okay.

Okay.

Okay.

Some day.

There is a primal scream in my soul right now – it’s trying to get to the surface. Where are you, little boy? Where have you gone? We’re here, still looking for you with every molecule in our bodies. We miss you so terribly.