I feel like I’m in a dream. One of those vivid detailed types where you wake up and the lines feel blurred between fiction and reality. But you were real. I know that.
I can still feel you clammy hands in mine, squeezing me with all your might.
I can still hear your machines buzzing gently all around.
I can still feel your long thick silky waves that I’d twirl between my fingers.
I can still hear your sweet little giggle. Oh how I love that giggle and ache to make you laugh once again. But that’s when I know the truth.
I climb into your bed, desperate for you, inhaling your pillow and clinging to your stuffed toys. But your smell is beginning to fade. I can’t face it.
You were just here.
On Sunday we celebrated your life. That seems an eternity ago already. It was a beautiful day, filled with love and courage. And you. We could feel you that day in the hearts of all those who love you. In the sea of butterflies and purples and NEVER GIVE UP. in the crowd. In the hugs. In the tears. In the sounds of all your little friends. I wanted to take them all home with me just to keep feeling close to you.
People came from miles away. People we had no idea were coming were there. People who were impacted by you, who feel braver because of you, who never even met you but whose lives have been changed. We felt you in them. And we felt proud of you and what you were able to do for others just by being yourself.
The music was beautiful. We knew you would like it. It made us cry and smile and feel you.
Daddy and I spoke about you. I don’t really know how we did. But it felt good to. We needed to. We felt closer to you with our words. You helped us feel brave once again. This is what we said.
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From Mommy:
This will be one of the hardest things I will do in my life. I may fall apart. But, please bear with me. Speaking about Gwendolyn is something I must do. The last hard thing I can do for her.
From the moment Gwendolyn was born she has been our guide. When I was pregnant with her I fretted about being a good mother. While I was nesting, I didn’t do the usual obsessing about strollers and car seats and cribs. Instead I stayed up anxious about how I would know my child. How would I know how to parent her? Not push my own interests or preconceived notions. How would I understand this tiny person coming into our life?
The very first moment I held her, she was crying her sweet newborn cry. I touched her little face and said, “Hello, little one.” She immediately stopped crying, and with new blurry eyes, blinked and searched my face. And all that worry melted. It was as if we had known each other a lifetime already. I knew then that we would navigate this big world together. Though, it was Gwendolyn who showed us the way more often than we showed her.
Gwendolyn’s first year was difficult. At just 3-months-old, she was hospitalized at Cottage for a month while doctors tried to figure out what was going on with her medically. At 6-months-old, just after receiving her SMA diagnosis, we spent another month in the hospital, this time at Stanford. She was very fragile at this point, but, even then, she was a social butterfly, greeting each new doctor or nurse with her sly smile and big eyes and always finding a way to wiggle her expressive little fingers onto them so they noticed her as a person – not just a patient. Home for just 10 days, her lung collapsed and we were back in Cottage PICU once again. It was during that third hospitalization that Bill and I began preparing to lose her. Without saying a single word, Gwendolyn looked at us with her deep soulful eyes and we both felt her telling us – “Trust me.” We listened. And once again she showed us the way.
When we got her home, Bill and I were a wreck. And I personally wanted to close the blinds, lock the door, and just hold our little girl forever. But Gwendolyn was, well, Gwendolyn — a happy, social, eager to see the world 8-month-old.
I will never forget the first big outing we took. We loaded her and what felt like a million machines into a little red wagon for a walk to the Mission. I was a ball of nerves. I didn’t want to go out. I didn’t want to be around crowds. And I had a bit of a tantrum. Bill looked at me and said firmly (which he never does), “We have to give her a life.” I wasn’t about to let him take her without me, so I begrudgingly tagged along. As soon as we pulled her out the front door she lite up ready for an adventure. And, as we walked through the streets, her eyes were big with wonder and glee at all the trees and sounds and people. I knew then that I had to get over my fear. We both did. Gwendolyn helped us do it.
It was her fearlessness, her sense of adventure, her determination and joy that always pushed us forward. She always looked at everything with an innocent exuberance and an expression that said, “Let’s Do This! Come on Mommy and Daddy, figure it out.” So we did.
Swimming, sledding, ice-skating. Jumping in bounce houses. Sailing. Surfing. Trick-or-treating with a gaggle of friends. Driving cross-country in an RV with special stops all along the way. Playing football with her cousins. Going to Disneyland with her bestie, meeting all the princesses, riding Pirates of the Caribbean on a loop. A first and a second date… with a boy… with gifts. Running three half marathons through Santa Barbara… There are countless adventures we got to experience and treasure because Gwendolyn pushed us.
Playdates with her PEP baby friends (and getting her arms covered in stickers) showed us just how social she was. These regular playtimes and friendships led to enrolling her in a music class that she adored — shaking her maraca, singing songs, being picked up to dance around the circle. Preschool felt like an impossible undertaking, but she cried when we left after just touring schools. With Bill and I attending with her, she slid down the slide and swung on the swings with her peers, climbed a tree and raced the others in their tricycles, she painted and played dress up, and loved every minute of being a child. Though we were often shaking and sweating with worry at each of these big steps, Gwendolyn never was.
There is no doubt that attending Washington Elementary was the highlight of Gwendolyn’s life. She loved everything about school. Her backpack and picking out her outfit each day. Her classroom and having her own desk. Getting stickers and attention from everyone in the office. Feeling sneaky running through the halls. The library and reading books with friends. Getting to just be one of the kids in everything — playing games and going on the monkey bars at recess, stretching in PE, acting as “The Goose that Laid the Golden Eggs” in her 1st grade play, dancing hip hop, reading with her big buddy Luke in KC, chatting each morning with her girlfriends… it was everything to her. She loved that her teachers always expected the best of her — she tackled curriculum eagerly, gave speeches and turned in reports, had to wait her turn and be respectful, and she always rose to the occasion because they treated her with love and dignity and understanding.
And throughout her three years at Washington, she gained autonomy and independence… something that seems impossible for a child with so many challenges. But Gwendolyn always knew what she wanted. I will never forget just a week into kindergarten… I had the expectation of being with her all year, helping her just as I had in preschool. She and Tina, amazing wonderful Tina, had already bonded and when I followed them to the rug and went to help move her arms during a song, she shot me a stern glance that told me: “Get to the back of the class with all the other moms!” And so I slunk to the back. And stood in awe of my independent little girl.
Gwendolyn will always have us in awe. And it isn’t just the big adventures. She always pushed herself intellectually and emotionally… and us too. She had some very big things to tackle for such a small child, but we faced her disabilities together as she made sense of it all and established her self worth in who she was on the inside — not what she could do physically. She was so incredibly trusting and patient. Imaginative and playful. Intuitive, intelligent and curious. And woke up joyful every single day — ready for the fun the new day would bring.
Watching Gwendolyn become a big sister will always hold a special place in my heart. Bill and I waited a long time to add to our family – but I am so glad we had these last 18 months to see her shine in her big sister role. Gwendolyn was so proud – so eager to teach Eleanora new things: a love of books was on the top of her list. Of course this new transition wasn’t always easy – especially as I had to divide my time more. But Gwendolyn articulated her feelings so wisely and we could see her maturing right before our eyes. And Eleanora always had an inherent gentleness toward Gwendolyn, just as their cousins, William and Henry, always naturally understood at such a young an age. In fact, Eleanora only grabbed Gwendolyn’s bipap once – just a few months ago. When I scolded Eleanora firmly, Gwendolyn yelled at me and told me, “Don’t talk to my sister that way.” Her grace and acceptance once again had me in awe.
Gwendolyn has profoundly changed us. We draw strength from her… even now. She gave all of herself unequivocally and loved unconditionally. She taught us acceptance and how to truly embrace the moment. She reminded us that life doesn’t stop at a heartbreaking diagnosis and showed us there is always a way to tackle the seemingly impossible. We know she will continue to guide us now as we find a way to navigate this big world without our butterfly in our arms.
We will always be proud of the incredible little person Gwendolyn has always been and the remarkable young lady she grew into. And we are eternally grateful for the opportunity to experience life through her joy-filled eyes.
For her first grade self portrait she was asked to describe herself in one word. Gwendolyn wrote: “I am happy.” We know, despite all the many obstacles she faced, Gwendolyn lived a beautiful life. And it was a gift to get to be her parents.
I love you as high as the sky, as deep as the sea, to the moon and back again… and even still farther.
From Daddy:
From the first moment I laid eyes on Gwendolyn she had my heart in the palm of her hands. A first time daddy, I was filled with wonder for our future. And I was nervous about whether I could become the daddy that she so deserved. I’ll never forget gazing deep into her eyes the first time I held her. Her eyes were already speaking volumes.
Gwendolyn was diagnosed with SMA several months later and our world was turned on its head. We were devastated, terrified, and lost. And we grieved. But then something beautiful happened. In true Gwendolyn fashion, our little girl was telling us exactly what she wanted out of her life. All we had to do was listen. She was 6-months-old. Already wise beyond her years.
No matter how short our time with her would be, we realized we had a distinct choice in paving our path forward. Retract and crumble. Or accept, embrace, and inch forward. We drew strength and courage from Gwendolyn’s determination and we made it our mission to wake up every morning to give her the life she wanted. In hindsight, she lit a fire in us that we didn’t know existed.
It wasn’t always easy. But seeing our little girl happy and thriving despite her challenges has always fueled us to push beyond our fears and give her the world. We’ve always been eyes wide open to the reality of Gwendolyn’s prognosis and how that would impact her life. And that has taught us to live presently every day. To cherish the small things. To celebrate and embrace the seemingly mundane.
Over the last 7 years 9 months we were given an incredible gift of time with our little girl. We are at peace with Gwendolyn’s passing. We miss our little girl more than we could have ever imagined. But we have hearts full of love and memories abound to help carry us through these next steps.
We could have never done any of this alone. And it’s important to us that each of you know how much we appreciate the life you helped us give our little girl. Gwendolyn would have wanted you to know as well. If it takes a village, Gwendolyn inspired the best. And she definitely brought some amazing people into our lives.
Over the years, our incredible family and friends have been there for us unconditionally — even though we haven’t necessarily been able to give our best back to them. They’ve happily made accommodations and adjustments in their lives. They’ve lent ears and shoulders. They’ve driven hours and hours and flown across the country to know our little girl and be part of our lives. When we’ve asked them to jump, they’ve leaped. And most importantly, they’ve loved our little girl.
SMA is a rare disease. But we were fortunate to find a group of doctors, specialists, and nurses, both locally and from afar, that walked hand in hand with us on this journey. They showed us how to care for Gwendolyn, always trusted that we knew our daughter best, and treated her with compassion, dignity, and love.
SMA is not a club we wanted to join. But through our journey we have found incredible families and people impacted by this disease. They’ve provided immeasurable guidance and support — sometimes in our darkest moments. And there is an unspoken bond and understanding of the impossible challenges we all face that we are forever grateful to have found.
Over the years our family has born witness to incredible acts of kindness, support, and generosity. Gwendolyn always had a knack for bringing out the best in people and inspiring them to dig deep and push themselves. On countless occasions we have seen a beautiful side of humanity that everyone should experience.
To the night nurses who found their way into our lives and became part of our family. You were so much more than amazing nurses to Gwendolyn — you were her buddies. You’ve loved and cared for our little girl for over 7 years with a full heart. You fell in love with her. And she with you. Gwendolyn’s trust in you allowed us to to rest and recharge. Which in turn allowed us to give more to Gwendolyn. You each had a special, unique relationship with our little girl. And we’re grateful to each of you.
To the Washington Elementary school community. When we first decided to put Gwendolyn in an inclusive kindergarten class, we were uncertain what her experience would be. From day one you embraced our little girl and our family. You propped us on your shoulders. You opened your minds, your hearts, and your families to Gwendolyn and what was possible. In fact, many of you thanked us for allowing Gwendolyn into your lives. Her experience at Washington was the highlight of her entire life. She was a proud ‘Wildcat’ through and through and always will be. Thank you for making those experiences possible.
Gwendolyn was able to thrive and excel in school in ways we never dreamed possible. This was in large part due to the teachers and faculty at Washington that opened their minds and hearts to Gwendolyn. They challenged themselves and in turn challenged her. They thought completely outside of the box and treated Gwendolyn just like one of the kids. And they always respected Gwendolyn and allowed her to guide them.
Her experience at school — especially her independence — would never have been possible without her full-time school nurses. There’s truly no word that could adequately describe the gift you gave Gwendolyn. These are incredibly unique, special nurses that walked into our lives and opened Gwendolyn’s world. Her trust in them to provide and facilitate every aspect of her school experience was amazing. And their bond, connection, love, and deep understanding of our little girl eventually allowed Victoria and me to pull away and Gwendolyn to experience an independence we never dreamed possible for her.
Gwendolyn was extremely social and she always loved being around other kids. Through her whole life she was blessed with a group of incredible friends who saw Gwendolyn for who she was — not who she wasn’t. It was always so natural. And if you were lucky enough to ever witness the pure love between Gwendolyn and her friends, it was absolute perfection. I know Gwendolyn would like to tell you all — thank you for being my friend. Thank you for loving me. Thank you for all of the hugs and chin tickles. Thank you for dancing with me and being silly with me. Thank you for being so understanding when I didn’t feel my best. And thank you for always being my biggest cheerleaders. Each of you is truly the good in this world. And Gwendolyn adored every minute of being your friend.
And to my beautiful wife, Victoria. Gwendolyn’s amazing mommy. We’ve walked this path bravely together — arm and arm. We’ve shared too many dark days and countless bright ones. We’ve showered our little girl with love and made it our mission to give her the world. And what an amazing life she had. We’ve always allowed Gwendolyn to guide us. And we’ve been true to ourselves and our little girl all the way through. Your dedication and commitment to Gwendolyn’s happiness is immeasurable. And your innate, deep emotional connection and understanding with her gave her security, self awareness, and self confidence that nobody else on this planet could provide. I love you so much. We are so fortunate that we had one another on this journey. And we are so lucky to have been chosen as Gwendolyn’s mommy and daddy.
For all of us the path forward is going to be difficult. There is no doubt about that. But I know we’ll find comfort in the life we were able to provide Gwendolyn and the incredible love we’ve learned from her. In the path she showed us how to brave. In the life and countless experiences we fought so hard to give her. In all of the lives she touched and lessons she taught. Her beautiful spirit will live on in us and in each and every one of those she touched.
Gwendolyn, I love you so much. I’m so incredibly proud of you. You’ll always be my little monkey. And I’ll always be your extremely proud daddy. Sleep tight sweetheart. Sleep tight.
*******
You were real. You were here. We can fell you. In a dream state, I can still almost touch you. But, as I wake, part of my soul is gone.