Shortly after getting our van, Gage got a new wheelchair. It was a necessary and desired change, but it meant going from a lightweight aluminum stroller frame and easily detachable seat that folded up to fit in the back of our SUV to having a much heavier and more complicated piece of equipment for daily use.
I’m so grateful we had our van from day one of this new seating system and I avoided the need to constantly disassemble and lift his chair each time we came and went anywhere (or really, four times per trip).
Not every family has been as fortunate as us in this department. I’ve watched other parents “make it work” in everything from sedans to vans that haven’t been converted, lifting not only a 65 pound plus chair, but also a continually growing child with very little of their own muscle control.
I don’t share any of this to evoke pity for families similar to ours. I can guarantee that no one wants to have the reality of their daily lives put on display so others will feel sorry for them. A “you poor thing” perspective really doesn’t do much good. But I do share because it is reality, and one that most people would never have any reason to think about. I want more awareness and understanding of the extra strain involved for those living with different circumstances.
The photo above was taken the day Gage received his new chair. How lucky are we that I was able to wheel him right into our van without lifting him or taking apart his new chair. I’m SO grateful!
The date stamp on this photo tells me it was taken July 13, 2020. Our first visit to the clinic to pursue this new chair was in November of the previous year. Not an appointment to explore options or discuss possibilities, but to be measured for this specific chair. The discussion about Gage needing a new seating option, and the subsequent hours’ worth of research, started back in May of 2019. At the end of that November appointment, we knew the chair we wanted and chose where to order it, starting the process right away. Three insurance denials, multiple appeals, and more than eight months later, Gage was finally sitting in his new wheelchair for the first time.
Why does a date stamp on a photo make me feel inclined to share that story? Because it’s a perfect illustration of the frustrating processes and constant delays involved with seeking help to fund a vehicle conversion, not to mention the astronomical cost. Again, no one is looking for pity here. I simply want to share a glimpse into day-to-day realities of families dealing with disabilities.
At times it feels like the load you’re given to carry is extra heavy, without any of the added frustrations of processes, wait times, insurance issues, etc. When the mechanisms or resources put into place to provide necessary help fall short or create more obstacles, it feels especially defeating. Parents are consumed by the need to advocate for their children, willing to fight the hardest on their behalf. But we are also humans with limits and sometimes just feel so. tired. of. fighting. The kicker—often the thing you work so hard to get is a thing you wish you never needed in the first place. It’s exhausting. How incredible would it be to lighten that load for parents? A gift to enGAGE Mobility can do just that! Not only do donations to enGAGE allow us to help families financially, but they also let families know they are not alone on this journey. Through your giving, those on the receiving end of assistance will be uplifted in more ways than one—a welcome reminder that you don’t always have to fight so hard. Sometimes, the extra isn’t strain or frustration, or obstacles. It’s the extra support, extra help, extra love.