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Every year on Gwendolyn’s birthday we have written letters to her. We started this before she was born. Before we knew we would lose her. Before SMA. They are our love letters to our greatest love, our angel girl, our butterfly. We wrote these letters to express the inexpressible. I reread them now and can almost feel her.
We also made a video each year. To celebrate her life. To commemorate the year. To remember all the goodness in it. I started making a video of her whole life with video clips we’ve never shared. But it was becoming a full-length feature… perhaps, with some help from a professional, that can happen one day.
And then I started looking at the photos from just this last year and I realized there was so much to share from this year alone: her strongest half marathon race, her first and second hip hop dance recitals, ice skating, gold medals at the Special Olympics, fun and silliness with friends – so much fun, academic achievements, riding the school bus for the first time (and second and a third), field trips, a wonderful week with her cousins at Thanksgiving, Disneyland with Hayden, big sister magic and mayhem, moving to an accessible house, and getting to go swimming all the time…
What a marvelous year she had. So much fun. So much adventure. So much love. We are holding on to these photos with every fiber right now. But looking at our little girl becoming a young lady, we know with certainty it was a good year. A beautiful year.
We know Gwendolyn had a life that was good.
My dearest darling Gwendolyn,
Oh my love, how we miss you so. Mommy and Daddy are broken without you. You gave us more strength and courage than I ever knew. It was you who made me joyful each day. It was you who filled my heart with a love so fierce it consumed me. It was you who taught me what is truly important in life. And you did it all by just being yourself.
Many take a lifetime figuring out who they are and what they want out of their time here on Earth. But you understood all of this about yourself with certainty from the moment you were born.
Your direction was always so clear — even when it seemed impossible to us. And because of that, you made almost anything happen. And that is remarkable. You are remarkable.
You were definitely born with a purpose. That isn’t something I believed until now, though people often said that to us. It didn’t seem fair to give a small child a mission in this big world. But you so clearly possessed a power in your sweet pudgy hands to move people into action. When you were just a baby, people’s hearts all over the world were tugged by your big eyes. They hoped for you and prayed for you. And we were grateful. But you were also able to lift them off their knees and into advocacy too. They shared your story. They told their friends. They donated. They fundraised. And they did things they’d never done before. Because of you.
You inspired kindness. People seemed to move mountains for you. We rarely went anywhere without people going above and beyond to help make your day brighter. You thanked them with your eager tapping fingers and that always seemed to be enough. And in knowing you, people seemed to want to be kinder and more gentle to others wherever they were. There is such goodness in wanting to make a strangers day better. And you brought that out in people.
You inspired courage and helped others facing adversity try things that once seemed impossible. Adults, many facing their own battles, learned by your example. You helped other families become better advocates for their children and push beyond expectations. Your joy in this world turned the question from “How?” to “How can we not?” Your life has been shared in IEPs across the country to help communities remember not everyone fits in a box — but they still fit! You inspired people to reach beyond what is sometimes given and fight for what they deserve. You did that.
You inspired change. You were talked about on Capitol Hill multiple times and helped make SMA and rare disease something worth fighting for to legislators. Your picture and story were shared in TED Talks and in labs around the world for inspiration to researchers; many of those researchers continue to tell us they still keep your picture up as a motivation to work that much harder. Your photo and story are part of genetic screening presentations given to doctors across the country and in brochures in OB offices to help families understand SMA and carrier testing. Your story was shared by the New York Times and in reports to help explain why health care reform was necessary. We never sought out any of this for you. We told your story, of course, but it was your determined spirit gently creating change.
I think of all of this now and I marvel, “You were just a child.” You were just living the life you wanted with joy and exuberance and a big sense of adventure. But you moved people into action. You were born with a purpose. And I was always the luckiest Mommy in the world to live this life beside you.
I miss you. I love you. And I will spend the rest of my days grateful that you were mine.
Happy 8th birthday my butterfly girl. Your first birthday in heaven. I hope it is magical.
I love you as high as the sky
as deep as the sea
to the moon and back again
and even still farther,
Mommy
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Dear Gwendolyn:
Happy 8th birthday sweetheart!
I can still clearly imagine what today would have entailed. Your birthday was always like a national holiday in our house — mommy made certain of that. And I’m so grateful she always did. You and mommy would have planned another amazing day, doing whatever you wanted to do with your favorite people. Maybe a big fancy party. A special outing. A sleepover with your besties. The “what” wouldn’t have mattered much to me. Just that it was all that you wanted it to be for your special day.
I can still feel in my heart how excited and proud you would be today. Beaming in that extra special birthday outfit you and mommy meticulously coordinated and laid out in your closet. There would have been purple or lavender or pink involved. And probably some bling. Maybe a special hat or clip or new hairdo. Your nails would be painted perfectly — Gramma would have made sure of that. Everything would definitely have been fancy and stylish well beyond your years. You’d look beautiful as always. And it would be exactly what you wanted it to be.
I can still picture the look on your face when mommy, Eleanora, and I would pop in to your room on your birthday morning. You would wake up extra early that day filled with excitement and you’d already have opened a special present from your awesome night nurse. We’d all shower you with extra tight hugs and lots of kisses. Sing you “happy birthday” for the first time of many that day. You’d probably ask us to sing it a few more times right then. And we would. Gladly.
I can still hear our phones ringing constantly today. Text messages pouring in. FaceTime requests. Presents piling up. Flowers. Balloons. Everyone that knows and loves you always knew how much you loved your birthday. And they always went above and beyond every day, but especially today, to make sure you knew you were loved far and wide. They’ll still come today. But it will all be very different without you here with us.
I miss you dearly sweetheart. I miss your presence more than I could have ever imagined. I miss the big things. And I miss the small things. But I mostly miss the tiniest, intimate details about you, about our very special relationship, and about the millions of special moments we were so fortunate to share together.
You may not be here with us physically to celebrate this very special 8th birthday. But I feel you. Right here with us. And we will do our best to honor your special birthday today. In every way.
Happy 8th birthday sweetheart. I love you so very much. And I’m so very proud of you.
All my love,
Daddy
Gwendolyn’s birthdays:
7th birthday video and letters
7th birthday Frozen ice skating party
6th birthday post and video
6th birthday fancy theater weekend in LA
5th birthday video and letter
5th birthday sailing party
4th birthday video and letter
4th birthday cowgirl pony party
3rd birthday video and letters
3rd birthday first trip to Disneyland
2nd birthday letters from Mommy & Daddy
2nd birthday princess party
1st birthday letters from Mommy & Daddy
1st birthday butterfly garden party