October 04, 2017 by Victoria Strong

My darling big girl, today you are 10. Ten years we are parents. 10 years adoring you.

It certainly doesn't seem a decade ago you were born. Memories of you arriving in all the first child and first granddaughter excitement are still so vivid. The autumn morning light in the hospital room as they first laid you on my chest. The curve of your round cheeks and your bowed lips, those gorgeous kissable pouty lips that I kissed a thousand times, I remember as if they are still right at my fingertips. Watching Daddy change your first diaper clumsily and with such care. Us trying to dress you in clothes that seemed so tiny when we unwrapped them but were enormous and hung off your newborn baby limbs. And that first car ride home with me right by your side and Daddy driving 5 mph. We were overly worried and consciously prepared first-time parents with every new baby gadget to keep you calm and safe. But you were easy and happiest just being in our arms, hearing our voices, nothing but basic love. So much love.

I know, from the moment you were born, you knew you were adored. We showered you with all that we had. And so did our family and friends and anyone who met you. And you gave all of yourself in return. Even as just a tiny baby, people stopped what they were doing and noticed the peacefulness you exuded, always commenting that you seemed so wise beyond your years.

When you were diagnosed with SMA just before the 6-month milestone, making it to one year seemed an impossibility. A first birthday became a tremendous gift, and every birthday thereafter. And an enormous celebration in our household. Weeks of excitement. Gifts galore. New adventures or over-the-top parties, we always let you choose. You loved your birthday. And so many made you feel so special. For 7 birthdays. 7 years and 9 months.

Ten. It's hitting me hard. And differently.

Ten years a parent and, yet, I don't have my buddy by my side. A big 10-year-old helper, a pre-teen in a whole new phase of life to teach us firsttime parents about. What a blessing it is to have babies in my arms again, but how strange it seems without my big girl, too. Incomplete.

I feel you all around us and see you in your sisters. I sense your serene aura. And, sometimes, I can almost hear you giggling with me at their silly antics. Those are good days.

But I'm also still absorbing your absence. Surprised by it. Especially because I feel you. It's as if you've disappeared. And I am still processing and adjusting to life without you. I no longer feel I am drowning in the cloak of mourning and even have periods of understanding, acceptance, even peace. But the concept that you are truly gone is unsettling. Some days it still brings me to my knees, crumbling under the weight of longing. My skin is thin. My bones more brittle. And, yet, you push me still. I feel the weight and breathe it in. Knowing I learn from the brokenness, understand myself and you more through it. Every day I grow because of you.

In some ways, now that this is our second year of loss, our third birthday without you, the angst is easing. I know now what I need - to have a ritual, a quiet family day, a celebration of sorts to honor you. It's not the big all-in celebration we had when you were alive, but we've created a tradition for your birthday to do something with your sisters that you loved. This year, we will take them sailing. Their first time. On the same boat we held your 5th birthday party. You had so much fun and we will tell them about it. They will wear dresses that were yours. We will decorate your gravesite with pumpkins and purple. I even managed to order your special birthday bouquet without sobbing. That's new. We will give your sisters a new book in your memory - one that reflects you - to add to the library that was once yours. We may even have cake today. I couldn't muster it in the past. But a birthday really should have some cake... and Eleanora will appreciate this offering A LOT! I bought special candles - just in case. See, you are pushing me, all the time.

10. My baby girl.

I've learned I need to protect myself on this day. It is too sacred. And I retreat inward. I am guarded, my heart is tender and afraid of being disappointed. Afraid others no longer remember how special today will always be. Because of you. Today has changed. For them, too. No longer cheering you on for your big birthday extravaganza, feeling the hope of impossibility as you outlived expectations. That feeling was empowering. But you died and that feeling is different now -- perhaps it is even too hard for some.

And then I receive an unexpected note, a small gift, a gesture, flowers left at your gravesite, a donation in your honor... and my heart opens. Fear subsides. You are remembered. My feeble aching mother's heart can rest into their care.  

While today hurts, we choose, in the pain, to celebrate. Celebration and remembrance are so important, even when they are hard. It allows for a different type of healing. A hopefulness as we trudge through grief. A completeness when there is so much still unfamiliar and broken.

Today, ten years ago, our extraordinary child was born. You, our beautiful Gwendolyn. Our magical girl who created such an impact by simply being yourself. By living boldly and with joy. By encouraging others to love more deeply, give more freely, act more kindly. By possessing enough gumption to believe you were just as you should be. Today, we celebrate you. We honor our ten years as parents. We reflect on the power of what a child's light thrown into this often dark world can spark. We remember you. Happy birthday, my darling child. Our big double-digit 10-year-old!

I hope you feel our love. Forever and ever and always.


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