Yesterday was a pretty big day for Gwendolyn. Truthfully, it was a big day for all of us. Gwendolyn rode “shotgun!” while sitting in her powerchair and spent three hours — THREE WHOLE HOURS — upright in it. She loved it. We loved it. And, as usual, getting out of our personal comfort zone and figuring out a way to safely make things happen for our little girl was a great step for all of us.
Gwendolyn has had her powerchair for months and we've been slowly, ever so slowly, getting everything set up for her needs and taking baby steps to try and increase her time in the chair. Typically, I take Gwendolyn to her therapy session in her push stroller/wheelchair, load up the powerchair in the minivan behind her, take it all out of the minivan when we get to therapy, put on all of her support paraphernalia (AFOs, TLSO, Hensinger, etc.), and then lift her into her powerchair for the 45 minutes she is driving around the parking lot during her therapy session. We then take her out of her powerchair, out of her layers of paraphernalia, and put her back into her stroller/wheelchair for the ride home. It's quite a process, let me tell you, but it's always worth it seeing the look of pure joy and confidence on Gwendolyn's face when she's cruising around — independently!
Our goal has always been to try — to try! — to move towards Gwendolyn spending more time in her powerchair specifically in social settings. And our hope has been that she will one day utilize her powerchair as her primary mode of transport — ride in it in the car, go to school in it, play with friends in it, etc. But, I'll be honest, we hadn't made much progress in that direction for the last several months. Gwendolyn's health challenges in the summer meant she was unable to be elevated which meant we didn't get to work on this during that time. But right now she's healthy and strong and our spunky little four-year-old wants to be taking those strides forward again… but we were holding her back. We had tons of real excuses but the reality is that we have just been scared.
Sitting upright for prolonged periods of time presents many challenges for Gwendolyn — she is more prone to choking on her saliva and it is simply tiring for her because she breathes with her belly. Since Gwendolyn can't swallow, if she chokes while sitting upright in her powerchair she needs to be placed flat for suctioning immediately. Her powerchair goes relatively flat but not flat enough for an emergency so we'd have to quickly take her out of her powerchair (with all of the paraphernalia) to get her flat on the ground. And driving in the car like this adds a whole new level of logistics. Time is critical. And while it's not impossible, it presents a real fear for us nonetheless.
As Gwendolyn's strength has returned, her awesome therapists have been nudging us to start getting her into her powerchair more regularly. We've known them for years and they know us and Gwendolyn very well. Last week they came by our house and we did a walk through together — getting Gwendolyn in her paraphernalia, in her powerchair, machines on the powerchair, out of our house, down the ramp on our front steps, and up the car ramp and into the minivan. Sure, it's a process. But we're used to processes by now. But this time I pushed Gwendolyn in her powerchair (not stroller) inside the minivan and placed her, facing forward, where the passenger seat normally would be. Keep in mind that she's faced backwards for 4 years while walking in her stroller/wheelchair or riding in the minivan. I stepped out of the minivan and I looked at her beaming — and I mean beaming! — face through the front window. It was priceless. I'll never forget it. She was in heaven. She wanted to go somewhere.
So yesterday was the day — Gwendolyn sat “shotgun!” while sitting up in her powerchair, next to me, facing forward — and we drove to therapy. The look on her face watching everything go by — seeing the stop lights, stop signs, turns, cars buzzing past, pedestrians, trees, clouds, signs, and what's coming next — was incredible. We held hands. We sang. She did awesome. And I did pretty darn well myself 
I felt nervous and worried and was exhausted after the excursion but I can't wait to try it again soon — and I know Gwendolyn can't either.
Over the past four years we've found that even the smallest step in a new direction can feel massively overwhelming and we are acutely aware of the challenges and the risks associated with taking those steps. But we've also realized that although an SMA diagnosis can be debilitating (to say the least), our little girl demands to be a child of the world. She has guided us, helped us push aside our fears, so she can have the experiences she craves. Riding shotgun, in her big girl powerchair, next to her dad, seeing the world from an upright perspective may seem minor — but in our life this was a moment to hold on to. Forever.