By Victoria Strong
When my husband and I were told our giggling 5-month-old with perfect pudgy thigh rolls was going to die, we grieved for all she would never get to do and all we’d never get to experience with her. She’d never learn to walk. Or take ballet classes or play on the soccer field. She’d never go to prom or attend college or get married. The list of an expected life taken from all three of us is long, and we grieved for each thing, each experience, each opportunity ripped from our grasp. And we grieved that after months of planning for our baby we could not even fulfill the most fundamental parental instinct – to protect her. Our grief and fear of when we would lose her was so encompassing we could feel it swallowing us whole, paralyzing us the way spinal muscular atrophy was paralyzing our Gwendolyn.
But then she didn’t become immediately sickly as predicted. And she still giggled at her silly parents as she had before and her pudgy thigh rolls were as perfect as ever. While our hearts ached with grief at our inability to change the dire, her little world had not really changed. She felt safe, she felt secure, and, in spite of the medical interventions she had to endure, our baby’s curiosity and spark for life never diminished. And that is when we realized everything going forward was a bonus.
Knowledge of finite time can be a gift if you allow it. That knowledge is the very reason we never waited to experience things, never put off the important memory making. Though fearful and unprepared, how could we spend that precious limited time falling apart? When so much is completely out of our control it goes against instinct to not clamor to control something. But with a disease like SMA, with no treatment or cure, the only control we have is in how we react. We had to muster up the courage to live life with fear and grief as a constant companion because our child deserved a life that was defined by the joy in it, not the number of years.
We started by savoring the small (some may say insignificant) milestones: going on a walk, feeding the ducks, swinging in the swings, feeling the ocean, celebrating a first birthday. All of those simple things now carried weight: one of heaviness that this could be our only time experiencing childhood rites of passage together and one of full encompassing gratitude that we get to experience them at all. Everything tasted a little sweeter and shined a little brighter after receiving our baby’s terminal diagnosis. And suddenly all those typical life stressors and parenting woes disappeared into the shadows, no longer really anything to worry about at all.
As our courage and confidence to handle her medical care grew, we started fulfilling bigger dreams: family vacations, cross-country road trips, sailing, Disneyland, celebrating a 3rd, 4th, 5th, 6th and 7th birthday. And soon our life of losing our little girl turned to advocating for her (and others) to live fully and typically while she was here. Having typical childhood experiences, like attending school and making meaningful friendships, were all things she was never predicted to live to see and that became our drive. And seeing her blossom, rise to every occasion, challenge us to allow her to push herself even further became the norm. It isn’t that we ever forgot her illness or how fragile she was, but we learned to live with it as the backdrop. We allowed ourselves to settle into a life of contradictions – one full of possibilities but acceptance that it was only for a limited time. Fear and grief became part of the family, familiar and ever-present but a more distant one.
In her seven years and nine months, we nearly lost Gwendolyn many times. Half a hair in a different direction, and we would have. We know what it is to be standing beside her helplessly, holding her clammy hand, seeing the team of nurses and doctors tremble as things go south. And we know what it is to be the one saving her life – sometimes at home, sometimes in public, sometimes with no one else knowing our child is dying in front of them. While there is no doubt we have been devastated and each of those experiences left bruises so deep they made us profoundly change, we didn’t fall completely apart. Not while she still needed us. Not while we were still fortunate enough to have moments to savor – even ones filled with fear. No matter how difficult life was, our child’s terminal diagnosis taught us that each day with her still with us was a gift.
On July 25th, 2015 when the time came to say our last goodbyes, we weren’t entirely shocked. In many ways, we began preparing for that moment the day we were told our giggling 5-month-old with perfect pudgy thigh rolls was going to die. But we certainly didn’t feel ready. I don’t think one ever is.
Losing Gwendolyn has left a void I don’t think will ever be filled. But we still feel grateful. Our daughter’s love of life allowed us to see the world through her eyes and gave us a perspective I don’t ever want to lose. Our child’s terminal illness taught us to pick ourselves up and keep moving forward – no matter how devastating the future may be. Navigating through grief and fear and finding a way to accept that we would lose our incredible child ironically helped us live more presently and more wholly. It changed the course of our lives, certainly. But we believe this course has a beautiful depth we would not have otherwise known. You can disappear in the overwhelming grief, be resentful of the path you must walk, or you can choose to see all that is good. My husband and I know Gwendolyn was our greatest blessing. And our child’s terminal illness was the gift that taught us that.
Victoria Strong is a writer, advocate, and mother. She lives in Santa Barbara, California with her husband, Bill, and together they founded the Gwendolyn Strong Foundation, a nonprofit dedicated to spinal muscular atrophy (SMA). You can follow their journey on theGSF.org, Facebook, Twitter, and Instagram.
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