It seems every few months Bill and I experience a time of heaviness…periods when SMA just becomes too much to bear. Days when the cruel reality of the disease takes over and skews the perspective we usually have.
Usually when I see Gwendolyn, I don't define her by her disease. This is surprising actually as SMA defines everything about our life. But, when I see Gwendolyn, I see so much more than SMA. And I love what I see. I love her feisty spirit and her very particular opinions. I love how social she is and how much she craves interaction with others. I love the way she looks at me when I sing to her as if I have the most beautiful voice she's ever heard. I love that she is such a dare devil and always wants to spin, jump, and go faster and yet is always ready for a snuggle. I love that she gets so excited to read books and loves when we are extra animated in the reading. I love how proud she is after Daddy blows her hair dry and how she admires herself in the mirror and looks at Daddy with such awe.
But, as a parent I want more for her. I want the world to be her oyster. I want her to be able to take it on and makes it her own. But SMA Type 1 makes that oyster very limited. I don't love her less because of her challenges and I know she has a full life. But, I wish she could have more.
I wish Gwendolyn did not have SMA at all. I wish her muscles were stronger and she could spend hours sitting up and driving a power chair with ease so she could actively play with her friends, go where she wants to go, move on her own. I wish she could breath without the use of a machine so she didn't need to be attached to a battery or a power outlet all the time. I wish she could speak and tell me how she feels, even if it is crushing to hear her verbalize that she feels left out or feels hurt when people stare, at least I could help her navigate those complicated emotions. I wish SMA was not degenerative and I didn't have to live with the knowledge that as painful as today is, it is far better than it will be in the future. I wish I could assume that Gwendolyn would grow to a ripe old age. I wish my special, special little girl were just a teensy bit less special. And when I start to wish these things it all starts to spiral and sometimes it takes me to places that are dark and overwhelming.
But something miraculous has been happening. Although SMA and the impact it has on our life is not going to change, the kindness of others makes it less overwhelming. The kindness and generosity of others, some friends and some complete strangers, and their willingness to join the fight against SMA or fight even harder than they were before is humbling, inspiring, uplifting and healing…incredibly healing. The kindness of others actually heals my heart, puts my feet back on the ground, and shifts my perspective back to seeing the glow of my little girl and not the darkness of this disease. And then I can be a better mother and a stronger advocate to fight, fight, fight to end SMA.