My middle child, Eleanora, is 7. The same age Gwendolyn was when she died.

Over the last few months since her 7th birthday, I have chosen not to think about it, not to hold the weight.

But when the occasion arises and I say the words, “She’s 7 now!”, in my heart it all hits me. She’s 7, and (with all hope beyond hope) she will get to be 8. Older than her sister.

My mind cannot absorb this fact. That’s how grief in losing my child has worked for me. It plays with truth. Creates alternate realities. When all expectation of a natural course of life is ripped to shreds, reality itself is sometimes difficult to fully comprehend. What is and what should be muddle somewhere in the ether.

My heart tells me I have two 7-year-olds. My mind corrects this to the more literal facts: I have a 7yo and a 13yo… except I don’t. I never have. I don’t know what it is to parent a 13 yo, or 12, 11, 10, 9, or 8. I never got the chance. She never got the chance.

And so here we are on the arch of the new. A new experience for us all. One that I relish. And one that hits me in the core.

Eleanora is her very own person. And she is also so much like her sister: bold in her daily living, confident in who she is, and so incredibly brave.

Our seven years together somehow feel much shorter than my life with Gwendolyn. It feels like she was just born, a scrappy 5-pound infant who has been all joy and big sunshine energy since.

I work hard to not live in the past. But we never forget our children and some milestones feel like a grenade. Nothing can remain pushed down too long or it will detonate… so, ever so slowly, I release my grip allowing the processing to bubble up.

Seven was a beautiful year in so many ways. And 7 was the most heartbreaking year of my life. Now 7 is non-stop talking and missing teeth and excitement about skateparks and American Girl dolls and learning to read.

I hold the abundance of 7 with fierce gratitude… and renewed mourning of yet another part of loss.

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When my baby was diagnosed with SMA and our doctor told us we would be lucky to get a year with her, I immediately knew I had to spend it differently. I was shattered and shocked, but I had matured enough to see this wasn’t an interruption to life — this WAS life and I knew every day together would be a gift that I would cherish.

When a life-altering experience that is beyond our control happens to us, it is indeed devastating. But within grief, we each have the opportunity to choose how we will frame our days and shape our perspectives. And those choices change everything.

I miss Gwendolyn with all of myself ~ but I don’t have regrets. We lived BIG when we could and cherished the miracle of the simple beauty in every day.

I hope in the struggle, you find the gifts too. They will carry you through the pain. NEVER GIVE UP.

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We Did It! We Did It! $1,000,000 For Gwendolyn’s Playground! Together we raised ONE MILLION DOLLARS to create play for all!

Two years ago, we asked you to join in our BIG vision to create the first inclusive playground in Santa Barbara County and we are so grateful that you have shown up over and over again!!! From $25 donations to $150,000, we appreciate each and every one of you and your belief in us, in this project, in the power of play for all.

After witnessing firsthand through Gwendolyn’s beautiful relationships how inclusion creates a ripple effect that benefits not only for those with disabilities but also shapes the perceptions of peers, we knew a magical playground where everyone belongs was an essential place to continue Gwendolyn’s legacy. When we have experiences with difference, we think beyond ourselves. And when we start viewing differences as unique gifts, a truly inclusive world is possible.

Thanks to YOU, we are well on our way! $1 Million raised toward a kinder and more accepting future for all of us! Thanks to YOU, we are well on our way to the $5 Million needed to break ground — and in midst of so many challenges of 2020. THANK YOU! THANK YOU! THANK YOU!

Next up >> the next Million! And then the next! NEVER GIVE UP.

You can get involved by making a direct donation or becoming a Founding Partner.

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In the last few weeks several dear SMA friends have lost their incredible children. Families who helped us face SMA when we were so broken, families who we have helped. And they have been heavily on my heart. Yesterday I attended the funeral of another dear friend who died unexpectedly. He was only 44 and has two young children. As I watched the room of mourners and reflected on what to say to his beautiful wife, I thought of this year of global grief and so many who suddenly find themselves beginning a new journey they never wanted to travel. And I marveled at the grieving process itself.

The hardest thing about grief when you are directly impacted is only you can walk your journey.

Our bodies know it will be difficult before the trudging even begins – we go into shock, our senses heighten, we get overwhelmed and over stimulated while our minds fog.

Those who love us surround us, offer to help, try to take tasks off our plate… and we need you.

The hardest thing about grief for those supporting us is you must witness your loved ones in deep pain, and there’s nothing you can really do.

You can offer comfort and a safe place to wail. Hot meals and warm arms. Listen and hold space. Allow for every emotion without judgement or the urge to fix. But you cannot walk the journey of grief for us.

After the funeral is over, after the visitors have gone home, it gets awfully quiet for mourners. Everything is so new in this next place where we don’t always know what we need. It’s disorienting and scary. And it hurts so damn much to begin living without the one we love.

And, yet, time and time again, we are brave enough to try. To journey into the dark with brokenness, trauma, sorrow, pain… with surrender and hope, trusting life to unfold through us.

And, if we are lucky, we have the continued support from those brave enough to sit in the discomfort, willing to be vulnerable and fallible with us.

And all of it is remarkable.

And uniquely human.

And one of the most beautiful opportunities to experience tender, resilient humanness.

NEVER GIVE UP.

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13! A teenager. From watching your friends grow, I can imagine your eye rolls as you tolerate my jokes and the sweet inevitable awkwardness of adolescence. I can wonder about your interests, and I have some ideas, but they are only guesses now.

Five years after your death and life is very different. When you were with us, your birthday was like a holiday in our house. The excitement leading up to it. The emotion and the holding onto the memory making. You adored your birthday, which is what made it so fun… but there was also the weight of the gift of time we were being given with each year. People from all over the world celebrated with you, sending messages and cheering you on as you defied the odds of your diagnosis. Family came into town and the fanfare lasted for days.

Now, it is much quieter – no balloons or gifts to be opened apart from those that I buy to help your sisters know you. Not everyone remembers anymore.

But I do. And I know that even when I am 90 and October 4th arrives, I will still recall all the details of the days you began to make your arrival. The wild windstorm that roared in the night, the bright full moon urging so many babies on that I had to recover in the supply closet. How my water broke at home with a movie-like gush and Daddy went into a panic but I insisted on eating macaroni. I had been so scared I wouldn’t know how to mother you but as you began your decent I felt a sudden calm knowing I was going to meet you soon. The first time I held you, the nurses had swaddled you tightly and you were red-faced from crying, I said your name and you immediately stopped, searching for me, your eyes blinking thick with the antibiotic they applied right at birth. I stroked your tiny cheek with my index finger and we locked eyes, all the worries trickled down and I could feel our souls had been connected all along. I knew we would guide each other and learn together. And we did, my love. We did.

These are the things one never forgets, body memories. The lights of the room, the scent, the trembling of Daddy’s hand as he cut your umbilical chord… All of it is embedded deeply into our cells, helping my body hold my broken heart in place.

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This picture was taken a month after Gwendolyn died. Eleanora was so little… she was still constantly looking for her sister.

Five years later, and that hasn’t completely changed. She now understands death is permanent – though that concept is continually difficult for even me to fully accept with someone who was so much the center of our world. She still talks about Gwendolyn, remembering their life together, including details of things we don’t have photographs of nor have mentioned to her. And she misses her big sister, often saying the most beautifully mature expressions of grief, such as:

I’m sad because I miss Gwendolyn – but I’m grateful I knew her.

She shares stories with Willa and has proudly taken on the role of teacher “because she never got to meet Gwendolyn.” And she rarely draws or calculates our family without including her biggest sister too.

I don’t know if I’m doing this parenting through grief thing right. I’ve made many mistakes and know I’m a different mother than who I would have been… but I try my best. And I believe that validating all emotions and normalizing grief and loss as human experiences has informed their emotional intelligence. And that’s a good thing.

Because my infant was given a terminal diagnosis, I started listening to communication around death. And I realized so much of our discussions of death with children is guarded and so glossed with “healing.” Perhaps, surprisingly, I don’t imagine Gwendolyn walking in Heaven, or without her breathing machine. And I don’t paint that picture. Gwendolyn was happy with herself exactly as she was. So I talk about her life and her personality — and, sometimes, when they ask, we discuss the medical and societal barriers that made her life challenging.

I know much of religion is based around concepts of perfection being attained in Heaven. But, to me, Gwendolyn was perfect just as she was born. The way we talk about disability and death matters – it shapes culture, assumptions, ableism. And I want my children to see disability as simply part of life – not inherently sad.

Because their sister’s life was beautiful.

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13 FOR 13 Gwendolyn would be turning 13 on October 4th. 13!

She taught us to live with our whole heart, see gratitude in every day, and be the change.

Join us in riding 13-miles (or whatever distance feels good) and in raising funding to build Gwendolyn’s Playground. Our goal is to raise $13,000 to buy our first inclusive swing set so everyone can feel the wind in their hair. It’s easy to get involved:

1. Map a route (anywhere + any time – including on a Peloton)
2. Set up a fundraising page 
3. Ask friends + family to sponsor your miles
4. Have fun, look for butterflies, feel the breeze on your face + remember the little girl who loved to do the same

If riding isn’t for you, please support us by DONATING and helping us reach our goal!!!

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You died 5 years ago, today. I no longer feel the searing pain of immediate loss, the bleeding out, the drowning as grief pressed me under every wave.

The broken pieces from shattering at your death are now tethered together by dense scar tissue. Visible and painful to the touch, certainly, but together just the same.

I’ve worked hard at healing, processing the unimaginable. Urging myself to give my all to the present. I laugh with friends and celebrate the joy of your sisters with Daddy. I can talk about our memories together, I can say your name… Gwendolyn… without crumbling into tears.

Most of the time my life feels so full of purpose because of you. Because of your ability to bring people together, your magic to make them feel courage and a desire to be kind. Because of the challenges of your diagnosis and our choice to the fight for change. It all became my life… And I am grateful for it.

But without you, the loss of you, it changed me. Sometimes I feel partially hollowed, like a pumpkin at Halloween with it’s insides scraped gone. Numb.

Sometimes I long for those early days of bleeding out because the rawness helped me feel so clearly. The heaving of tears was a cathartic release and emotion allowed me to drift along in the in-between, still hinged to you through our fierce bond.

Now I must work to feel connected to your presence. It no longer feels like home.

In the beginning I felt so alone, so isolated by the overwhelming pain that is hard for others to hold or to bare witness. It stung as as they walked away.

Now I see so much pain in the world, so many others who have endured, who have lost, who have experienced trauma. I recognize it, I feel it with them, but I too struggle to hold the weight of it all too closely.

Grief is transformational. And it has been part of most of my life. Sometimes I’d like to cast it aside. Only hold the love. The good memories and devotion.

How I feel today I know I won’t know five years from now. And so I honor this moment. This space. You taught me to hold onto the now, even when it’s hard.

Grief changes. And I’m changing with it. And that’s okay.

My love for you remains. My love for you is eternal, my darling butterfly.

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Surrender. It’s a word that sounds like giving up… but I believe it is essential to growing through grief. And it’s one of the most beautifully brave gifts we can give ourselves.

When I think of the day I was told my babbling 6-month-old had a terminal disease, I raged and railed. Guttural sobbing and thrashing against reality. It was impossible to process that the sweet honey-scented flesh of my flesh would be taken from my arms. From that day and for the 7 years I was gifted with her, everything shifted and I began to surrender.

I surrendered to courage.
I surrendered to pain.
I surrendered to strength.
I surrendered to vulnerability.
I surrendered to hope.
I surrendered to what is.
I surrendered to love.

So much in life is beyond our control. But we still have the choice in how we respond and in how we evolve in its shadow. Radical surrender allowed me to feel all of the devastation without judgement or fixing. I fought like hell to change what I could – and succeeded in helping to create a life-changing treatment for SMA, giving families today a future together. And, bit by bit, I allowed my cells to absorb what was beyond my control, tenderly holding the truth that I would lose my precious child. When the lows hit, I let it all in with acceptance that they were a tool to allow myself to process the overwhelming. And as the yang to that I allowed myself to feel the exhilarating highs of joy with a fully open heart and pure love ~ and love carried me… even through the impossible.

In this unprecedented moment when life has completely shifted, with so much unknown, surrender is so critical to moving through this period. If we accept what we cannot change and focus on what we can, we begin to stop railing. If we allow ourselves to be vulnerable, we see with more empathy. If we nix criticizing ourselves and why all this change is so difficult, we begin to allow our emotions and reactions to be our teacher. And there is so much for us to learn.

Friends, this is hard stuff. We are collectively grieving life as we knew it. Let the big feelings in so you can let the joy in too. We will get through this ~ and we will grow in the process.

NEVER GIVE UP.

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