My needs and assets

SPOILER ALERT: This is actually Week 5 of my experiment, and I'm still alive! :)

Building a team of volunteer caregivers is really challenging, especially when most of them haven't met me yet. The question/invitation of: "Would you be a caregiver?" is a loaded question - what does it even mean?

I have SMA type 2 and that comes with extensive caregiving needs. I am wheelchair-dependent and can’t bear weight. I also have weak grip in my hands and cannot lift my elbows. My balance is sometimes precarious, and when I am laying down, I cannot sit up or roll over. In my wheelchair, I have limited range of motion; if you can, imagine yourself sitting in a chair with your elbows tied to the armrests, your thighs tied to the seat, and your ankles tied to the legs, and you’ll get an idea of how much I can move on my own.

So caregiving means transferring to and from my chair, propping my elbows up on surfaces so I can wash up or feed myself, washing and drying and brushing my hair, getting me dressed, preparing meals, etc. It can seem overwhelming if you get a glimpse of the exhaustive list of major and minor tasks.  

But here’s a basic list of my assets: I can verbally communicate, and I have a sharp mind and vivid imagination. I have the spiritual gift of teaching, so I am great with explanations, instructions, adaptations, encouragement and patience (with learners). I’m an organizer and planner and can typically see and work out details within a bigger scope. I also like to meet new people and make friends, and I like to do what I can to take care of my friends, too.

Because of my assets, I think that I can put my friends at ease. They are not doing this alone; I am here to talk them through each step and cheer for them every time they succeed. We end up laughing and telling each other stories. We don’t feel overwhelmed by all the tasks, because we do them together and have fun in the process.

Stay tuned to learn about the amazing team I have this summer, and how God put us all together!