When we 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 fulfill even 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 things she had to endure, our baby's curiosity and spark for life never diminished.
Knowledge of finite time can be a gift if you allow it. That knowledge is the very reason we never wait to experience things, never put off the important memory making. Though fearful and unprepared, how can 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 this is her one life and she deserves a joyful one.
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. As our courage and confidence to handle her medical care grew we started fulfilling bigger dreams — family vacations, cross county road trips, sailing, Disneyland, celebrating a 3rd, 4th, 5th, and 6th birthday. And soon our life of losing our little girl turned to advocating for her to live fully and typically while she is here. Having a typical childhood, attending school, making meaningful friendships, all things she was never predicted to live to see 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 forget her illness or how fragile she is 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 is only for a limited time. Fear and grief became part of the family, familiar and ever present, but a more distant one.
We nearly lost Gwendolyn last week. Half a hair in a different direction and we would have. Standing over her, holding her clammy hand, seeing the team of nurses and doctors tremble as things went south, wasn't entirely shocking. In many ways we have been preparing for that experience since 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. The last few weeks have been scary — extremely. And there is no doubt we have been devastated. But we didn't fall apart. No, not yet. Not while she still needs us. Not while we are still fortunate enough to have moments to savor — even ones filled with fear. This experience has left bruises and each bump along our journey with Gwendolyn’s SMA has made us change. With limited time, however, we have learned to quickly dust off and get back to the important — living.
After 18 days in the pediatric intensive care unit we are thankful that we got to leave the hospital with Gwendolyn much better. Is being in the hospital difficult? Absolutely. But each day there was another day with our daughter. That is our perspective. We are feeling elated and grateful, celebratory and triumphant, but never smug. We know we will face this path again and we feel indebted to the hospital staff for helping to give us more time. A disease like SMA does not allow us complete victory. With no treatment and no cure we cannot ever feel it is behind us, that she is a “survivor.” But we can and we are saying, “Not today SMA. Not today.”
Navigating through grief and fear and finding a way to accept that we will lose our incredible child ironically has helped us live more presently and more freely. You can disappear in the overwhelming grief, be resentful of the path you must walk, or you can live in the now and truly cherish each moment knowing it is a gift. Our daughter's innocence that life could be any different has taught us that despite our own grief she thinks life is great — and her outlook gives us perspective. Our daughter's terminal illness has taught us to pick ourselves up and keep moving forward — no matter how devastating the future may be. She deserves our courage. She deserves adventure. She deserves a typical childhood. She deserves a full life — and a joyful one.