Getting a wheelchair accessible vehicle is hard
As we got closer to school starting, I could feel my nervousness ramping up. I love Sage’s school. They have been absolutely incredible with her and she loves it there, but after her hip surgery just getting out of the house has been challenging.
When I mentioned some of my anxiety to the PT Sage is seeing at Phoenix Children’s she suggested we increase PT to twice a week (well three times a week if you count her normal home based PT as well). I knew doing this would improve Sage’s mobility, ease her pain, and help her feel more comfortable even during the long day at school.
They didn’t have anything available after school hours, so we scheduled the latest we could on Tuesdays and Thursdays. It wouldn’t be a problem, I’d just pick Sage up from school early.
What I forgot is that when I pick her up from school early I have to leave her power chair at school, because we don’t have an accessible vehicle that can transport it. This wasn’t a problem last year when she still fit in her old manual chair, but it is suddenly a problem this year because now she doesn’t.
Suddenly, getting an accessible vehicle went from something on the list of things we needed to work towards to something we needed right away. And I had no idea how to do it.
I got online and started searching for grants. Maybe there’s a grant we can apply for…. only problem was that we generally had a household income just slightly above the cut off for applying for these types of grants. We make just enough to disqualify ourselves, but not enough to feel it. Middle class problems.
I felt some frustration, but also gratitude. I’m grateful for Bryan’s income. I’m grateful that he’s still able to work. I can envision being in a situation where that wasn’t the case (we were in that situation just two years ago, thankfully for only a short 3 months).
I said a little prayer for the grants I was looking at and for those with real need to find them and receive them.
Then I went back to panicking and brainstorming.
I called some friends. They all encouraged me to “just ask”, to put the word out and ask for people to donate. At the time I couldn’t name my reaction, but I felt it physically.
I felt such resistance in my body to the idea. My jaw felt tight and my stomach heavy.
The easy answer would be to say it was pride. I was just being too proud to accept help. But, emotions are rarely easy or straightforward and this one definitely wasn’t.
Even now, after processing through the emotional reaction with some friends, I am still not sure how to talk about it, how to name it. It was layered.
First, there was a limiting belief, rooted in scarcity. Some part of me always hates asking for help because I can envision a day in the future were I will need help even more than I do now. I can envision what my state of need would be if Bryan really took a turn for the worse, if he had to stop working again, if the very worst happened. I worry that if I’m not careful I will tap out my resources, tap out my community, before I’m really desperate. I feel I have to pace my asks, so that I don’t drain the well and then end up in a worse situation.
Of course, this is a false belief. The kingdom is one of abundance, not scarcity. And I shouldn’t let fear for some future unknown keep me from being brave and bold in the present.
But, even more than that, there was another emotional reaction at play. Something more complex. I’ll try to do my best explaining it, but I don’t think you can really understand it until you’ve been in the situation to regularly rely on the help of others.
We’ve had to ask for help a lot in the past few years. And we’ve been given a lot. So many people have stepped up to help us with medical bills and financial needs since Bryan and Sage were diagnosed. And we are deeply grateful. This burden is often too heavy for us to bear alone and it is a gift of grace to us when others help us hold up under it.
But, I have a longstanding battle with feeling worthless. And sometimes, my lack of being able to contribute to our need feeds this lie in me that I am worthless, that I have nothing of value to offer, that I am just a drain on everyone around me.
Sometimes,I want a different kind of generosity, the kind that provides something more than financial help, but instead provides meaningful work. I want to participate in meeting our need. I want to participate in my salvation.
There is something beautiful and glorious and wonderful about learning to accept gifts freely given by another.
But there can also be something devaluing in continually being in need and having others just give to meet the need. Maybe this is just pride, but maybe there’s something else in it too. Something connected to the truth that we were created and designed for purpose, for work, to act in the world. We weren’t made for inaction, we weren’t made to sit around and let others do for us. We were made for partnership, not dependency.
As my friends so acutely reminded me, caring for Bryan and Sage and Thad is not sitting around on my hands and letting other people take care of me and when I devalue the work I do as a caregiver, I devalue those I care for as well — I don’t ever want to do that. They are the most valuable and important people to me in the world. But, this caregiving work doesn’t pay medical bills and it leaves me constantly feeling my financial need.
There was, of course, even more to my reaction against just asking for help then just these things, but these were the big themes.
I wanted to play an active rather than a passive role in helping Sage get an accessible vehicle, I wanted to do something that felt (even just a little) like giving rather than taking. But, I also wanted to push back against my false beliefs of scarcity and any misplaced pride or ego.
So, what could we do…? How could we push into meeting this need, openly relying on others (because the truth is we are needy and we can’t meet the need ourselves), while still playing an active role in the process… How could we do that?
As we asked those questions, an idea started to form. Over the course of a few days we started to pitch the idea to a handful of people, with an overwhelmingly positive response and I’m so excited to tell you about it….
Tomorrow. Because, now I’m out of time and need to go pick Sage up for therapy :)
Grace and peace,