under this deep, blue sea: learning to live with grief

August 6, 2015, Michaela Evanow, 4 Comments

So often, in my quiet moments when the blurring slows down, I find myself thinking: what if my life was just normal? What if my three year old could run around in the backyard? And could have a snotty nose, scraped knees and playdates? Because that? It feels normal, and I crave it.

I picture her long, weak limbs bearing weight and moving. I picture her breaking free from the heaviness of this disease. I picture her head held high. I can see her. But then, *poof*, it’s gone, partly because I want it to be gone. It hurts like hell. Like a split wound, salt poured in.

I once had a vivid dream when she was eight months old. She was crawling. She looked over her shoulder at me. I can see her so clearly, crawling and carefree. And I felt it in my bones–that’s what she was made to do. Before having my son, I literally could not picture having a healthy child until I had this dream. 

It’s been nearly three years since her diagnosis and I still grieve.

I tell myself I shouldn’t be sad. She is who she is.

But the disease is a thief. And we’ve been told it will take her life, it will take her right from our arms. These little ones are extraordinary fighters. But they shouldn’t have to fight so hard.

Florence has been fighting and smiling her way through for years. I can see she is tired.

And that is why I still grieve. I grieve because she has lost so much strength and will never gain it back. I grieve because she continues to battle and the only end in sight, is the end of her life on this earth.


I wrote that many months ago, when Florence was alive.

I had another one of those vivid, dreamlike moments in Hawaii. I knew our vacation would bring up some memories and tears would be shed under the hot sun. For parents that have cared for a medically fragile child, respite on the beach can mean a whole lot of time to think. And thinking means crying. Sometimes with a crooked smile. Sometimes ugly crying in public. Sometimes, under the sea.

I was in the warm waters in Waimanalo, Oahu. It was just me, floating out there, facing the massive waves head on. I’ll admit, I was a little nervous, because I’m seriously afraid of sharks and the waves were huge. But Jay was with Theodore on the shore, and I had no companion to swim with. I also didn’t even care if I got smashed into the seabed. I was hurting. I was thinking about her. I kept bobbing and scrunching sand between my toes and letting the waves toss me. I ached for her, out there in paradise.

I turned around and started heading back to shore, and decided to dive under.

All of a sudden, I felt her so close. I didn’t feel her presence, but rather her I felt her deep within me. As I was under the waves, I felt like I was in my own womb. But it wasn’t me, it was her. I could hear her thoughts and feel her love and saw all the days ordained for her. The water kept washing over me while I saw her little life pass before me. I saw all those sweet moments we had with her. Everything I’ve ever loved about Florence flooded my being. And under those waves, I started to cry. Softly at first, unaware of the tears. And then, with force. I came up for air, afraid I would aspirate sea water. My tears mingled with the salty waves. I felt such joy and peace and also, such deep, deep sadness.

I walked up to the shore, stunned. I was wet from the sea, but I felt like I had bathed in my own tears. I could barely explain it all to Jay, (and I still can’t do it justice here). I just stared at the palm tress and sobbed and stayed present in that holy, precious moment.

The thing with grief is, it feels different over time. At first, there is such peace. Right after she passed away, while we were driving home, we felt a stillness. It lingered for a little while, but then it changed. That foggy, state disappeared. And it roared in, all over again. I think I assumed grief was meant to be conquered. We made it through day one. Week one. Month one. We should be “this” far along in our grieving journey.Image-1But no, that’s not how it works. Day two can feel like month two. Month three can feel like day one. It is hard to control grief. Sometimes, I pick up her clothes and smell her, because I want to feel her, I want to feel sadness, I want to ache.

Other times, I bite my lip and turn up some fun music, and try to shake off the sadness. I don’t want to cry right now. I am so tired of crying.

When I cry, I acknowledge the loss. And in that acknowledgment, I face her absence head on.

I feel it, in the very bones that carried her weight and made way for her.android-chrome-72x72

4 Comments

  • Reply Diana Trautwein August 20, 2015 at 8:49 AM

    Amen, amen. Grief is its own animal and cannot be contained, only lived into. And ocean water is a perfect milieu for those tears – can’t think of a better place, actually.

  • Reply Sue August 7, 2015 at 6:57 AM

    Hi Michaela, As I often do, I read some of your back posts as well. Your writing touches my soul in a way not many things do. You mentioned how grief is grief and it may look or smell different but it is so. I believe that to be true. However I’ve not experienced what you have. The death of my beloved Dad does not compare in the least with what you’ve been through and I won’t make believe it did. Yes, the grief was awful but our relationship in his life was amazing and he was healthy for over 80 years. When he died I thought I would die but I supposed that may be normal for some? So yes, I believe grief is grief but oh dear I don’t know what I’m trying to say!!! I hope this makes a bit of sense. I hurt for you on this journey and just want you to know that I love you so much, even though we’ve never met in person. I want to send you photos of the marigolds I planted. Where should I send them?
    xo Sue

    • Reply Michaela Evanow August 9, 2015 at 3:03 PM

      Sue, thank you so much.

  • Reply Holly August 6, 2015 at 4:29 PM

    This is beautiful Michaela. I often think of you and pray for you and your beautiful family. I know grief is not short lived; it continues long after the Celebration of Life, and everyone else goes back to their “normal” lives. I will continue to remember your precious Florence, and I pray for you and Jason and Teddy as you adjust to daily life without her. May God bless you and fill you with peace and joy. Much love, Holly xoxox

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