We posted these things on social media over the last few weeks. The holidays have been very hard this year – though there has been gratitude in them and some meaningful signs from our special girl too. I want to post our thoughts here to remember how we processed our grief or worked at finding our way. I know Gwendolyn’s absence will always be heavy this season. I hope with work and honesty, we will see how our grief evolves. And I am certain Gwendolyn will continue to guide us.
This is one of my favorite pictures of Gwendolyn. So today I put this sweater on Eleanora. It made me happy. #sistersforever
When I come to visit Gwendolyn I bring a treasure trove of trinkets. I never thought I’d be that parent, decorating my child’s gravesite for holidays. But I can’t help it. I joke that it’s starting to look like a Florida retiree’s front porch. I like it, though. I like the little shrines we have created – our race medals, rocks painted by her friends, a shell necklace from our trip to Hawaii, lots of butterflies and 8s for her birthday. I still can’t emotionally comprehend that she’s gone, that we’ve already had to celebrate her birthday, Halloween, soon Thanksgiving and Christmas without her. She was just here. Larger than life. Soaking in the sunshine. Bossing me around. Snuggling with her sister. I sit here and tidy her flowers, rearrange her trinkets, make room for new ones. I think about how she’d like the sparkly 8 I made and the toy Eleanora picked out for her. I watch the twirling flower blow with the wind and I know she’d think it was fabulous. These silly little things give me something to touch and hold and fuss with while I’m here. And that’s the closest I can get to my gorgeous girl.
This is last Thanksgiving. This is our last time all together.
Gwendolyn looked so beautiful that day and was so happy to be with her cousins — her most special people, her first friends, her buddies.
My sister and I were pregnant at the same time: her second, my first. With our big matching bellies, I envisioned a lifetime of our children playing and growing together. A lifetime of holidays and vacations. And family photos like this.
All that changed with SMA.
Because her diagnosis was so severe and she had life-threatening respiratory problems by 6-months-old, Gwendolyn could not fly. So, without hesitation, my sister brought her boys to us from the East Coast multiple times a year and the whole family flew out every Thanksgiving for a longer stay. There was always a countdown for their annual Thanksgiving holiday arrival. We always went on day trips to new places, played football, had tea parties, played games, stayed up too late and spent a week of hunkering down as a family. And because of this, Gwendolyn grew up with them. And she was so proud of her special bond with her special cousins.
This year is very different without Gwendolyn. Bill and I flew out East to their house for the first time as a family. Our former traditions no longer make sense and we are all finding new footing.
And missing Gwendolyn. So deeply missing the girl who was the center of our world and forever changed all of our lives.
But we are thankful. So very thankful to have known such a remarkable child.
This week we laughed. She would have liked that.
We cried. I know she’d understand.
We visited museums and marveled at the children climbing and touching everything so freely. We went in a treehouse that was totally accessible and knew she would have loved feeling like a bird up there.
We had a sack race and walked in the woods. That was new. We watched the cousins run and play together. Eleanora giggled at the fun. She always giggled too.
We sat around and shared stories, as families do. Just like we always did with her in the middle. We talked about her.
We felt the warmth of the familiar. We felt the strangeness of the new.
She was missing.
We are learning this life without her.
We felt sorrow. We felt joy.
Without Gwendolyn, our family will never be the same. But she is the fiber carrying us all through. And we felt her – quietly humming her love song in our bones.
Sometimes I would look at her and think, “You are seriously the most beautiful child I have ever known.” I felt that way when I took this picture two years ago today. She was breathtaking. I miss feeling completely awed by her.
This evening at the cemetery I looked up and saw a red fox, just like her favorite “Mr. Never Give Up Fox” stuffed animal she slept with and who still sits on her bed. (I don’t think I’ve ever seen a fox in California before.) As I carried Eleanora closer, it didn’t run – just groomed its tail and watched us. It wasn’t scared; almost friendly. And when I looked up, the red sunset had turned the clouds pink and the mountains purple.
I was awed by her once again. Thank you, sweetie. Thank you.
Family of 4. Forever and ever and always.
One year ago today, I was dancing with my darling dancing diva. And I knew how lucky I was. From my post then: “So thankful for this amazing little girl — her perseverance, her wisdom, her sense of fun… And love that she (occasionally) still likes to match with her goofy mom.”
This week’s sunrises and sunsets have been brilliant. The entire sky has been pink and purple and glorious. And they make me feel embraced.
They make me feel Gwendolyn’s sweet little arms around my neck.
And they make me feel surrounded by the kindness of all of you.
Throughout Gwendolyn’s life and in her passing, we have received the most beautiful gifts and the most gentle kindness. Packages sometimes arrive unexpectedly and anonymously. The simple text from a friend, “I’m thinking about you.” The email from a stranger, “Gwendolyn taught me this.” These are all gifts that lift us. Now more than ever.
I’ve been struggling lately. Hurting deeply. And solitude is really the only thing that is a salve in these unfixable cracks. Talking about it doesn’t help. And lately talking about other things in life doesn’t either. I need to slow down. Look inward. To help me make sense of myself and my new world.
But I don’t feel alone. I don’t feel hopeless. I know I am supported by a mountain of love. Your gifts and your kindness remind me of that every day. And Bill and I are so very grateful.
Holding Gwendolyn was the most amazing feeling in the world. Something some parents don’t even notice. Something some complain about. Something some parents never get to do. Can you imagine never holding your child in your arms? It reminded me of an old post I wrote. ::
“This is what we did today.
What’s more, Gwendolyn demanded it.
In her non-verbal way, she let me know she needed snuggles. She needed to hear my heart beat in her ear. She needed my warmth. She needed my comfort. She needed her mother’s embrace.
And then she fell asleep.
And I cried.
My heart smiled. And I wanted to freeze time.
It’s not that this is entirely new. I snuggle with Gwendolyn every day. But this is the first time she told me she needed me. And it made me think of the times when I couldn’t hold her.
Two weeks after learning of Gwendolyn’s SMA diagnosis she was hospitalized for a month. She was six-months old and she was suddenly hooked up to a million machines — and she was weak. She choked every time I tried to hold her. And I was scared… overwhelmed… devastated. I used to climb into the hospital crib to wrap my arms around her and fall asleep next to her. I was going to snuggle her no matter what, but picking her up to hold her in my arms had become a scary experience instead of a comforting one.
I will never forget a young nurse who made me/helped me get over my fears. She acknowledged that “Yes it is different now, but she needs you and you need her.” And she helped me learn new ways to hold Gwendolyn so she was supported and wouldn’t choke. She propped pillows all around me and on my lap and she put Gwendolyn in my arms. And I cried. She then made me do it on my own reminding me that “You are going to do this at home, so you need to get your confidence up now.” And she was right. All of it.
Holding Gwendolyn today, having her fall asleep in my arms made me so grateful for that nurse. It made me hope there are others like her helping scared mothers embrace their child, regardless of machines and tubes and cords. Because there is nothing better in the whole world.”
These are two of the very special gifts we have received since Gwendolyn’s passing. The butterflies are from our best friends and the sign came anonymously. We treasure them. Meaningful gifts like these are all over our home — so we can see Gwendolyn everywhere. And it helps. When I’m falling apart, which is often these days, I find myself looking up, touching them, saying these words, reminding myself of how fortunate I was and of all the goodness that Gwendolyn continues to bestow.
These are the words I said to Gwendolyn every night, from the moment she was born until the moment she left this world. These are the words I’ve started to say at her gravesite, because I’m often unable to say much more before the guttural sobs no longer allow words to leave my lips. I only just started saying these words to Eleanora. It was my special thing with Gwendolyn and I felt I was betraying our bond to share them. Now I know these words are a way to forever connect them — through love.
To all of you who have sent gifts or cards, I can’t express how much something to hold has mattered these last few months. Thank you for gentle kindness. Thank you for beauty in the dark. Thank you for tangible pieces of Gwendolyn to touch when my arms ache with her absence.
Today she ate sand. And ran after birds. And stomped on waves. And climbed mountainous berms.
Today she threw rocks. And her food. And a tantrum. And then climbed in my lap all on her own.
Today she demanded a tutu after her nap. And twirled with delight. And told me to clap. And then attacked me with her kisses.
Today she selected her own books and her own toys and freely moved her body to entertain herself.
Today I’m tired and tousled from her toddler physicality. But, my gosh, this is easy.
Yes, this is easy. I know. I know. Parenting is the hardest job in the world. That’s true. But, for a small child, as long as I’m giving her my focused attention she is happy. And fulfilled. And she will survive this day.
What an enormous gift it is to not question her survival. And that changes everything.
There will always be great struggles raising tiny humans. But perspective certainly makes all of it, every single bit, a blessing.
You will always be our firstborn child. The one who made us a mother and a father.
The one who taught us it is possible to live with our hearts outside of our bodies.
The one through whom we saw the world anew. With more clarity and perspective than ever before.
The one who shined brightly, even on the dimmest of days.
The one whose belief in goodness and trust in others opened our own broken selves to do the same.
The one who gave life all you had with joy and exuberance and an instinct that you were perfect because you were you.
The one who showed us the depth of love is limitless… even when you are no longer in our arms.
You will always be our beautiful butterfly, our silly monkey, our reason to NEVER GIVE UP.
And we will always be grateful that you were ours.
I know grief. We are old friends. Though there is a much darker side to grief with the loss of a child. But what I’m learning (and so beautifully reminded by my sisterhood in this #mamagrief and the many friends who’ve traveled this before me) is there is light in the struggle. Not in coming through triumphantly – that does not exist when your child dies – but in the actual journey itself. If you allow your perspective to open, to accept that yes you are irrevocably changed but the sharp edges are what give your perspective depth, you can see a light you would have never been able to see before.
I am not sorry my life turned out this way. I am sad my daughter died but I don’t wish my life were any different. Our life with SMA, and most significantly our life with our magical little girl who lived so fully within SMA’s confines, opened our perspective and shaped the way we will always see the world. And that view honed our convictions, allowing us to live more wholly. And that is a blessing.
Today on Christmas Day, the first without our precious child, I feel every pang and the edges cut deeply. But love and gratitude are stronger. And light abounds.
Finding peace with family in this beautiful spot.
Getting away for the holidays was good for us. A change of scenery, a new pace, and simply spending our days all together as a family helps to recenter me when I feel most broken. Bill and I also experienced those extra special things, the things that seem unexplainable that help to soothe my soul.
When out on a snorkel, a sea turtle actually swam up to us. She saw us before we saw her and she lingered under us for a bit before surfacing and having a look at us above water. We also saw a family of humpback whales breaching, not just once, but a whole musical dance. And later we could hear their calls underwater when we swam.
Everywhere we go, Gwendolyn is there.
Her presence is so quiet now – and sometimes that is painfully not enough. But when I slow down and allow myself to be, I can feel her in everything I do. She’s with us in our every breath. And she’s in everything beautiful we get to see. It is Gwendolyn who showed us how to be grateful for all that is big and all the slow space in-between.
It will be a very different year without you, my love. I can’t really imagine how we will get through – except that I know you will be guiding us as we find our way.
Happy New Year. From our family to yours. NEVER GIVE UP.