What I Know About Grief

Grief is ever-changing. That much I know. It is not on a continuum of “getting better” and you certainly never “get over it.” You simply learn to live with the components of grief as they settle into your being. It is normal to feel and feel deeply. It means you have loved deeply. But it is also normal to have days when you feel balanced and at peace. Grief can be big and it can be quiet. It hurts and it feels comforting. It is unpredictable. And, like it or not, it is part of who I am.

In many ways Bill and I have been grieving for 7 years and 3 months, since the day our babbling 6-month-old was diagnosed with SMA Type 1 and we were told: “It is terminal, there’s nothing you can do; you may have a year.” She lived well beyond that and we celebrated every single day, but we also grieved and hard.

In the early days I cried a lot. I cried whenever she was napping and didn’t need me to be her joyful mommy tickling her toes and singing “Wheels on the Bus.” I cried for all she wouldn’t have and all I wouldn’t get to experience with her. As time went on my tears of sorrow mixed with tears of joy. I cried when she was happy, was treated with acceptance and kindness, achieved the unexpected. Gwendolyn got used to her tearful Mommy, often giggling at me when I’d lose it while watching her beam.

Sometimes I got angry. I was angry at the universe. Angry at doctors for not having a treatment. Angry at ignorance and the people who said stupid things, especially if they were said around my perfect girl. And I even got angry at grief.

Desperation ensued. I think this was around age two, the predicted SMA Type 1 death sentence. I would have given anything to heal my daughter. My own life in a heartbeat. 

But, all along the way Gwendolyn was happy. She was doing well and having fun being a child. She loved being with others, especially children, and she eagerly wanted new experiences. She didn’t spend her life in the hospital as predicted and she refused to stay home all the time. When we felt overwhelmed by sadness, her soft giggle made all that melt away. When we were shaking with the anxiety of what may come, her big doe eyes calmed our nerves. And just simply holding her, loving on her, and seeing the world through her joy-filled eyes put everything into perspective. As long as she was okay in that moment, nothing else mattered. She gave us courage.

We still grieved and went through sadness and anger and fear over and over again, but we started to learn about it and learn from it. We met other families facing the same devastation and without realizing it we learned not only from their life with their child, but from their grief. We grieved as they lost their children, heartbroken because we loved their babies too and in anguish for ourselves by the reminder of our own fate. We watched as they bravely shared their emotions and the personal ways in which they keep their child’s memory alive. We processed what felt healthy and productive and we were quietly soaking in lessons on what was to come.

We also learned from past losses and got help to deal with our grief early on, knowing we wanted to be the best mom and dad we could be. We put in a lot of hard work, went to dark places, and learned healthy ways to express our grief and channel it into positive change. Grief hurt. But, it is because we allowed ourselves to go there, to try to understand living and dying in the same breath and truly own that our sweet child’s time was finite, that we were able to continue to push for what she wanted, even when we were petrified of losing her. Somehow we were able to rationalize that we were keeping her alive… to LIVE… so we had to give her the best life possible. And that gave us purpose in the heartache.

I’m grateful for that now.

When Gwendolyn passed away, though completely sunken, we had a sense of calm. Preparing her service didn’t feel awful. Instead, it felt comforting to continue to do things for her. To continue to feel a sense of purpose by lovingly meeting her needs and pushing ourselves for her. We had very specific thoughts and plans to make her memorial service represent her. We searched the cemetery for the perfect place, knowing we needed it to feel peaceful and comforting so we could visit regularly and make it an integral part of Eleanora’s childhood. When we bought Gwendolyn’s grave and our own, side by side, we didn’t sob. It was a relief to know we found what we needed. Speaking with the mortuary and making those painful plans too wasn’t the nightmare I had dreamt many times. Though in a fog, we both still felt completely present. We could still feel her in everything… in the house, in our movements, in every decision that it all came together with ease. And all the planning made us feel close to her — and that was what we wanted to feel most.

For quite a while I still couldn’t fully grasp that she is gone. Part of me was conscious of the denial, wanting to hold onto that feeling in the morning when I was just waking up and all of this felt like a dream. I savored those few precious seconds where I felt like she was just in the other room; I could feel her in my bones and even allowed my mind to wander to what fun she would get to have that day. For 7 years those were always my first thoughts. And then the reality would set in, so I’d bury my head in the pillow clinging to that feeling of her in my being again. Even if it meant feeling kicked in the gut afterward.

It has been four weeks now. A month since I held my beautiful daughter, caressed her long hair, kissed her smooth cheeks. A month since I squeezed her sweet little hands and felt her softly squeeze mine in return. A month since I told her how much I loved her: “As high as the sky, as deep as the sea, to the moon and back again, and even still farther.”

I no longer feel that sense of calm. As the days move and those tasks to honor her are done, the hard things have begun. The removal of her things. The firsts without her. Going through life completely differently now.

Some days I know are going to be tough to face. I try to prepare for the hard things, go into them knowing they will leave scars. I try to balance these painful tasks with something lighter, like meeting friends to take Eleanora swimming or to the park. I’ve been writing about some of these things on Instagram to help me process. Though some days I cannot find the words.

“Today was a hard one. The medical equipment company came to collect Gwendolyn’s machines. Some families want to get rid of things like this right away. But we didn’t feel that way. We liked having them here. They were part of her, part of our life. This breathing machine sustained our sweet daughter and gave us all a beautiful 7 years, 9 months together. We never resented them. Nor did she. They were a gift. At just 6-months-old she started wearing bipap, she needed it. She never fought it. In fact, the first night she wore it was the first night she slept through the night in months. And, without it’s support, we would have lost her long ago. I thought the silence would be deafening. And I’m sure that day will come. But for now I still hear them all. The buzz of Gwendolyn’s machines has lulled me for years and are too ingrained in my being to not hear them now. Somehow having them here physically, though no longer on, felt comforting.”

“Sometimes grief hits so hard. A day of feeling okay. Remarkably so. And then it hits like a flood. And I ache.

Found all the clothes she wore the last week of her life. Well, not found. I knew they were there but I wasn’t ready. I thought I could today. The pretty dress she wore on Sunday. She was a bit brighter and we wanted to take her out that afternoon. So we dressed her in a pretty dress to make her feel extra beautiful. And she did.

And the flood overtakes me. And guilt for feeling okay before. The guilt is powerful in grief. Even when I know in my mind it does not belong.

So I scoop up Eleanora and head outside to blow bubbles, one of the things the girls loved to do together. I cry as I run to get the bubbles to blow. Don’t have the breath to exhale them myself. And Eleanora smiles and claps and asks for more.

And then a hummingbird flies to the feeder she and Gwendolyn hung up together this summer. It’s wings moving so quickly but it hovers in place for some time. Busy Eleanora, far too young to understand, stopped, stood still, and pointed. With glee she exclaimed, “Sissy!”

I needed that today.”

Some days I feel half normal. I even feel grateful that I had so much time. I know 7 years and 9 months is an enormous gift. I don’t feel the heaviness pressing so strongly on my shoulders. I find joy in silly memories and pride in the life she lived.

“Earlier this week I couldn’t even look at these things without sobbing. Today, they make me smile.

Gwendolyn picked out this sparkly nail polish after going to a movie with one of her best friends this summer. I thought it would make them feel grown up to get to do that. A special almost-third-grader treat. She perused her options carefully before settling on this one. I still have this color on my nails from Gwendolyn’s service.

On the Tuesday of Gwendolyn’s last week of life, Daddy came home early from work with a gift for Gwendolyn. She was in her wheelchair ready to go to the doctor when he asked if she wanted her gift now or later. She darted us an excited little look and said, “Now” with a giggle. This shirt is called “Cat-titude” and she loved it. She wore it proudly the next day. Our little fashionista always.

Our friend Lauren flew in from New York on Friday. She was supposed to stay with us and we planned a fun visit. Everything changed, of course. She still came over on Friday for a short visit and I am so glad she got to see Gwendolyn. When she gave her this book, Gwendolyn’s eyes got big and a little brighter reading the title. She looked at Lauren with gratitude and softly said “Thank you.” I know this made her feel special. We had no idea this would be the last night of her life.

Today I see these things and I remember. I remember every detail. Every expression and sound she made. Today these things make me think of my girl’s sparkle. They remind me that even on hard days, she always found joy. And that makes me so proud of the remarkable person she always was.”

The last few days I just feel unbalanced. Unsettled.

Like part of my spirt is missing. It is.

And I know if I could just feel her warm skin on mine, I’d find my footing again. She gave me that so many times before.

But I can no longer draw strength from her physical being. And I miss her intensely with every fiber. That sense of calm I felt in the early weeks was flamed from feeling her in everything around me. But I no longer feel her surrounding me like a protective cloak.

And it all makes her feel so far away. And that is crushing and I feel I’m being swallowed by the enormous grief waves. Unrelenting. Gasping for air.

So I look at her pictures and watch her videos. I hold onto the thoughtful gifts people have sent and the kind words they have written. I spend time with those who love her and miss her and are feeling the same way. I visit the cemetery and bring her flowers. I talk to her and beg for signs.

And then I remember that I know grief. We are now old friends. Though this is a new relationship we are building, I know grief well enough to know it is normal to feel deeply because I loved deeply. The most beautiful profound love. I know I must dive in and allow the groundswell to flood me. Sometimes I will be able to float along and sometimes I will need to allow myself to drown for a little while. But I know I will survive this wave. I will breathe again and find solace. Perhaps not every day, perhaps just for a few hours. But I will learn to live with this ache. And I will feel joy — even in the midst of sorrow’s etchings on my soul.

Grief is big and it is quiet. And it is part of who I am.